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T-cell
Check it out Arthur smile.gif
http://download.neuron.org/pdfs/0896-6273/...27307000293.pdf
adoucette
The good news is that the protein produced by Olig2 is not found outside the brain and even in the brain it could be dispensed with for a considerable period of time (once the brain has developed), but the tumors need it to spread.

Makes it an attractive target for treatment of glioblastoma.

Still there are no drugs which target the Olig2 gene, so even with this knowledge we still are a long way from a drug that could exploit this. Keeping my wife alive long enough for a cure seems like a less likely outcome the more time that goes by. My wife's condition continues to deteriorate and it appears mainly from the pallative drugs she is taking, not the brain tumor itself.

Besides the persistant itching, fatigue and nasuea, the chemo has lowered her platelets to a very low level and she is now bleeding internally from hundreds of locations. The amount is low but still she will have to begin transfusions unless her bone marrow once again gets its act together. (she is SO black and blue it looks like I've been beating her for days)

Still, thanks for the info and the kind thoughts.

Arthur

T-cell
I got off the phone with a friend, and in my rush to post, almost forgot the other half.

She agreed that combining this with an effective oncolytic virotherapy, and you've probably got a winner, and...
No glucose transport necessary.
T-cell
I assume she's on rHuEpo and taking iron or is there some contraindication with her chemo?
T-cell
Arthur,

Concerning rHuEpo; there's been some promising research as to both platelet increase and tumor suppression. In my layman opinion, I would think it's a safer option than transfusions.

I honestly don't know, I may be grasping at straws.

Take care
adoucette
QUOTE (T-cell+Feb 16 2007, 01:58 AM)
I assume she's on rHuEpo and taking iron or is there some contraindication with her chemo?

She's not and from what I can tell rHuEpo has some serious issues as well.

In any case, the doctors are aware of it and don't recommend it.

Her iron levels are fine and all her other blood tests have started to recover from their low points a week ago.

At this point its probably better to do nothing and let her body handle it.

You don't really need a lot of platelets unless you get a bad cut.

So I'm keeping her away from anything sharp and avoiding any trips in the car.

Now next Monday, at her next blood test that could change, because a transfusion is also not without risk.

Arthur
T-cell
Arthur,

EPO: think Lance Armstrong and every other world class endurance athlete. The guy had been living on the crap since his bout with cancer.

Anyway, I have no right to argue with you or your Doctor's decision.

Here are some links to info on studies dealing with an old drug. It's relatively safe concerning cell toxicity, it's non-addictive (even though it's an opioid based chemical), and as your physicians want; doesn't produce an immune response. They're trying to develop different compounds for better delivery methods and efficacy. I don't believe it's necessarily a cure, but at the very least in combination with her chemo, could have the strong potential to drastically slow tumor growth.

Please check these out:

http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/query.f...t_uids=15297423

http://www.ncbi.nlm.nih.gov/entrez/query.f...t_uids=10941904

http://www.ncbi.nlm.nih.gov/entrez/query.f...st_uids=9465062

Take care Arthur

My continued prayers
adoucette
Looks interesting, though I can find nothing on use of these drugs in clinical trials.

I notice the drug Noscapine is apparently not available in the US as well.

Arthur
Capracus
QUOTE (adoucette+Feb 16 2007, 05:41 AM)
The good news is that the protein produced by Olig2 is not found outside the brain and even in the brain it could be dispensed with for a considerable period of time (once the brain has developed), but the tumors need it to spread.

Makes it an attractive target for treatment of glioblastoma.

While promoting tumor growth among gliomas in general, in glioblastomas Olig2 has the opposite effect.

A novel function of OLIG2 to suppress human glial tumor cell growth:

QUOTE
In conclusion, we have shown that OLIG2 suppresses the proliferation of glioblastoma cells. Furthermore, our results indicate that OLIG2 achieves this effect by increasing the transcriptional activity of the p27Kip1 gene through the CTF site present in the gene promoter.


adoucette
QUOTE (adoucette+Feb 17 2007, 10:39 AM)
Her iron levels are fine and all her other blood tests have started to recover from their low points a week ago.

At this point its probably better to do nothing and let her body handle it.

You don't really need a lot of platelets unless you get a bad cut.

So I'm keeping her away from anything sharp and avoiding any trips in the car.

Now next Monday, at her next blood test that could change, because a transfusion is also not without risk.

Arthur

Update,
While my wife's Platelet count has started to recover from 29 last week to 68 this week, her White Blood Cell count and more importantly her Granulocytes have now taken a nose dive. Her WBCs over the last 3 weeks: 6.2 to 3.7 to 2.5
Her Granulocytes over the last 3 weeks: 5.1 to 2.6 to 1.4

If Gr gets below 1.0 (1,000 per uL) then her risk of infections from normally present pathogens goes up. Below 0.5 and its plastic bubble time.

Seems the normal method of giving her Chemo is to start off at 1.5 X Body Surface Area (ratio of ht to wt) and based on blood tests over that month, adjust the next dose either up to 2.0 X BSA, stay at 1.5 or drop it to 1.0 x BSA.

Seems her doctors skipped this first step and went right to the 2.0 X BSA.

Why I don't know as I just figured this out and the doctors have not responded back as to why.

Arthur




Capracus
Tumor Treating Fields (TTFields)
QUOTE
The NovoTTF-100A device used in this trial delivers very low intensity, alternating electric fields to the tumor site through the scalp.  These fields are known as Tumor Treating Fields or TTFields.  Due to the unique shape of cancer cells when they are multiplying, TTFields cause the building blocks of these cells to pile up in such a way that the cells physically break apart. In addition, cancer cells also contain miniature building blocks that move essential parts of the cells from place to place during division.  TTFields cause these building blocks to fall apart since they have a special type of electric charge.  As a result of these two effects, preliminary study data indicate that cancer tumor growth is slowed and may even reverse after continuous exposure to TTFields.  Preliminary data also indicate that the TTFields affect the healthy brain cells much less than cancer cells since healthy brain cells multiply at a much slower rate, if at all.
adoucette
Thanks,

We knew of this treatment.

Its not available to my wife now as she doesn't meet the "inclusion critera"

Basically, for almost all of the trials that are going on, my wife has to have a recurrance of the tumor.

In some cases, like this one, not ony would she have to have a recurrance but it would have to be inoperable.

In essence the trial is limited to people who have a hopeless prognosis and about a 3 month life expectancy.

At the same time they exclude people who can't perform daily living tasks independently and have no other significant illnesses.

This, for patients with a recurring glioblastoma, is a huge hurdle.

My wife would make the grade now, but just barely. All bets are off if another tumor develops. (I say "if", but its almost certain that it will)

Even then, if she were to get in the trial, she would only have a 50/50% chance of actually getting the treatment.

This sucks in that most trials are 2 out of 3 chances of getting the treatment.

Arthur

adoucette
We spent much of this week at the hospital as it was time for my wife's 3 month series of MRIs.

The very good news is there are no signs of recurrance of the tumor.

The other good news is her blood counts are much better on the lower (but still effective) dose level of the Chemo (Timodar), so she in fact gets to start her next round of therapy on schedule (unlike the first round where we had to wait three extra weeks for her WBC and platelet count to get to adequate levels). In fact see gets her first dose of this cycle tonight.

The other good news is based on a slower weaning schedule we have got her down to 1 mg/day of the Decadron steroid that she had to take to keep the brain edema under control, yet her energy level has stayed up. We now believe that we can get her off of this drug entirely or at least down to ~ .5 mg per day. The side effects of this powerful steroid are not good and so the sooner off the better.

The bad news is since we are still giving her the Decadron, she is still fighting high blood sugar, and for reasons that are unclear to any of her doctors, as we go down in the Decadron, her need for insulin has gone up. While two months ago she was getting 40 units per day, now she is up to 60 units (3 injections) and still running Blood sugar levels > 200. So what with the blood testing and the insulin shots we are still poking her 6 or more times a day.

On a very positive note Northwest Biotherapeutics has filed for Authorization for Use of DCVax®-Brain for Commercialization in Switzerland

http://biz.yahoo.com/prnews/070417/aqtu067.html?.v=8

My wife missed the trials in the US as her tumor was diagnosed after their enrollment had ended.

Still they saved the tumor and if the Swiss agree with the effectiveness of the drug we will hopefully be able to go to Switzerland later this year, early next for this promising vaccine.

Arthur






T-cell
adoucette Posted on Today at 3:01 AM
QUOTE
The very good news is there are no signs of recurrance of the tumor.

Good news? It's Great News!

I'm a little confused as to why the Doctor doesn't understand your wife's high BGLs. Common side effect of steroids. Affects a plethora of processes. Even healthy athletes who are juicing have to take insulin. When she goes off the dexamethasone her BGLs should return to normal. Conversely, if her BGLs were to suddenly drop precipitously, this MAY indicate a return of the cancer (malignant cells will usually extract every gram of glucose available because of their uncontrolled growth). If you and your wife choose to pursue an antiviral therapy and aren't able to acquire the Swiss vaccine, there is a company in Canada that is doing some good work in the field. Just let me know.

Congratulations,

God Bless
adoucette
QUOTE (T-cell+Apr 19 2007, 12:44 AM)
adoucette Posted on Today at 3:01 AM

Good news? It's Great News!

I'm a little confused as to why the Doctor doesn't understand your wife's high BGLs. Common side effect of steroids. Affects a plethora of processes. Even healthy athletes who are juicing have to take insulin. When she goes off the dexamethasone her BGLs should return to normal. Conversely, if her BGLs were to suddenly drop precipitously, this MAY indicate a return of the cancer (malignant cells will usually extract every gram of glucose available because of their uncontrolled growth). If you and your wife choose to pursue an antiviral therapy and aren't able to acquire the Swiss vaccine, there is a company in Canada that is doing some good work in the field. Just let me know.

Congratulations,

God Bless

Hi T-Cell,

You're right, It is great.

Sorry, I'm a bit bummed right now as they are seeing VERY POSITIVE results from the DCVax®-Brain vaccine, but MAINLY when it is used on NEWLY DIAGNOSED GBMs. Due to the timing of my wife's tumor the trial wasn't open then so it wasn't available. A new trial just reopened in Dec of 06 but by then, of course, her tumor had been removed. Though pathology still has the tumor, I've been on the phone with the people at Northwest Biotherapeutics and it is a not possible for my wife to get treated with this UNTIL the tumor returns.

So now we are between a rock and a hard place. As a GBM patient you would think you never want to hear its returned, but with the only treatments that look like cures requiring a tumor to work with, what you now hope for is a recurrent tumor that they can resect.

Unfortunately, for GBM patients, that's usually NOT how a recurrance presents itself.


As to her BGLs, the problem is the amount of insulin has been going up as the amount of steroids have been going down. When she was on 4 mg per day she was getting 40 units, at 2 mg per day she was up to 50 units, now at 1 mg per day she is getting 60 units and still her pre-dinner BGLs are running 180-220.

Arthur
T-cell
I always hated the endocrine system. It's so complex and comprehensively dependent for homeostasis. Dealing with a specific pathogen like freakin ebola can be easier. This information you gave obviously isn't good. Get your wife to a top notch endocrinologist or hospital if her body doesn't start normalizing it's BGL after her steroid treatment is completed (big question mark here, individuals can differ greatly as to time of recovery and, in rare cases, it can take a life threatening turn for the worst if it isn't treated both correctly and quickly).

On a side note; without bias, what would you consider her present body fat composition to be? You can usually have it done for free at your doctors office. There are a number of methodologies and technologies for calculating this, some better than others. Just need an approximation (%). If this is an ancillary cause of her problem, I know a number of safe and healthy ways to kick start the system. In this area I'm very much Licensed to prescribe. Keep us abreast. We all wish your wife a speedy recovery.

I'll post one of my case studies tonight. You can tell me what you think. It took almost two years to complete. I'll give you a condensed abstract version. The entire study is over a 100 pages. Writing these things can get ridiculous if you're not careful.
adoucette
Not sure about BMI, for her Chemo we go by her BSA which is 189 based on 70" & 160#.
Her BGL prior to any steroids was a bit high, 140 prior to eating.
Her EXERCISE level though is way down since her surgery.

Arthur

T-cell
Arthur,

Your wife's weight doesn't appear to bad for her height. If nothing changes and your wife's physicians can't resolve her issue, consider utilizing an Holistic approach with their blessing (clearance). I rarely would talk about going in this sort of direction, but I've witnessed quite a number of incredible physical transformations. There's a great deal of research concerning Holistic approaches for dealing with hyperglycemia and poor insulin sensitivity.

My continued prayers

Here is that case study (somewhat simplified and exhaustingly condensed) I wanted to show you. I'm still waiting for my patient to have a Gallium scan to test for bone integrity. The doctors say it's a medical first, but then again, so is my 20 inch johnson. Just kidding, it's only 16 inches. cool.gif


Exercise Induced Reversal of Secondary Osteonecrosis (Condensed) Case Study

The patient was a 38 year old female insulin dependent diabetic recovering from a nonhodgkins lymphoma tumor inside her right distal femur. She underwent a bone biopsy, chemotherapy, and radiation. Over four years from the completion of her last chemotherapy treatment, while in remission, she was ultimately diagnosed with possessing a quaternary medical condition.

Prior Conditions Before Starting Therapy:
1. Type I Diabetes with an hA1c of 7.0 (prior to the lymphoma)
2. Retinopathy in both eyes (prior to the lymphoma)
3. Lymphedema of the right knee (post-radiation treatments)
4. Stage II Osteonecrosis (ON) lesions present throughout condyles and shafts of right and left femurs diagnosed by MRI May, 2005

Ancillary Conditions:
• Constant Fatigue during exercise resulting from the sudden decrease of her Blood Glucose Level (BGL)
• Frequent Localized Pain at the prior cancer affected region during or following exercise (a chronic soft tissue injury as a result of the bone biopsy procedure)
• Severe Muscle Atrophy / Poor Neuromuscular Response (due to the radiation treatments and relative nonuse of the legs)

Prognosis:
Extremely poor with minimal chance of recovery. Presumably undergo; eye surgery, femoral core depression / vascularized bone grafts. Possibly in the near future undergo; total knee, hip, and even femur replacements for both legs.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

Certain therapies and treatment options were ruled out due to potential serious contraindications:

▪ Thermal Hydrotherapy presented risk due to the patient’s diabetic condition.
▪ Muscular Electrostimulation devices increased risk of cancer reoccurrence.
▪ Ultrasound risked microfractures of the structurally weakened distal portion of the cancer affected femur.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

Following the completion of 21 months (June, 2005 through February, 2007) of a noninvasive exercise drug-free treatment regimen (exception was the continued prescribed insulin), the patient's present condition is as follows:

1. BGLs lowered and stabilized with present hA1c at 6.1 (February,2007)
2. Retinopathy in total cessation
3. Lymphedema and Localized Pain have all but diminished
4. ON in both femurs is no longer present. Even the post tumor infected area inside the distal portion of the right femur has shown a significant increase in blood flow and healthy new bone marrow (verified by MRI February, 2007)

► The patient (now 40 years old) has been cancer free for six years since her last chemotherapy treatment April, 2001

Summary:

Since the MRI readings suggest the patient’s condition was Secondary ON, the etiology would most likely lend itself to the corticosteroid treatments.

The patient's long term outlook appears to be directly indicative of the femoral osteo-cellular turnover and healthy bone marrow regeneration. Simply asserted; the longer and more consistent the therapy, the lesser risk of reoccurrence. Probably an optimum of 10 to 11 years from the start of the exercise therapy for permanent reversal. Baring any additional causative agents (examples: alcohol abuse, additional corticosteroids, elevated BGLs, trauma, etc.), the process should remain fairly gradient.
adoucette
The good news is her MRI from last week came back essentially unchanged from the one three months before, i.e. no sign of any new activity.

As far as the BSL all of her doctors say wait for her to get off the Steroids before they try to deal with this issue.

In anycase, none of them seem overly concerned.

Arthur
adoucette
Pamela's mental functioning began deteriorating while I was on a business trip last week. It was gradual and not that alarming at the time.
We thought it was because we were at the last stages of weaning off the steroids she has been on to reduce brain swelling so I upped her dose Friday the 25th (X 4) and saw some improvement but even at this much higher dose by Monday the deteriorating conditions again became evident.

After waiting for an opening at the MRI center since Tuesday afternoon, Pamela finally got her MRI on Wednesday afternoon. They weren't sure but thought it would be too late to get results back from radiology that afternoon (Pamela's condition while serious to us, is not medically serious in respect to the need for a priority reading)
Still they gave me a copy of the MRI on a DVD.
I know I shouldn't look at the scans and wait for the official word, but finally, after we knew they wouldn't call we got desperate enough/dumb enough to do so.
To this untrained observer it looked pretty bad.
But both tumors and edematous tissue take up the contrast material and look white, while normal brain is various shades of gray.
There was a lot of white.
The good news is none of it appeared to be in the lower/central areas of the brain (which would make it inoperable), nor were there any in the frontal lobes where Pamela's personality resides.
The bad news is there was more white than when we saw scans of her original tumor.
But, not being a trained radiologist, I didn't know if its just swelling and could be resolved via more steroids or its a reoccurrence of the tumor.
So, while I feared that its both, we still had to wait for the official readings/interpretations.
In the meantime we are both basket cases.
With stress levels through the roof, neither of us could get to sleep Thursday night so finally around 2 am we both ended up taking one of her prescription sleeping pills. They really worked. We both slept till 10 on Friday!



Unfortunately it appears that Pamela's cancer has returned.
That's the bad news.
The good news is once again we appear to have caught its return fairly early and it is apparently still operable.
The bad news is once again she will lose another part of her cognitive abilities.
The good news is she should retain all of her memories of self and family.
But now we have to decide when/where/how the next step in the process will be done.
The good news is being a "recurrent" Glioblastoma patient quite a few clinical trial treatments are now available that were not available to her when she was first diagnosed.
About 117 to be exact.
Which is what makes it so very difficult at this stage.
For both medical and practical reasons she can only really apply to one trial as she will have to go to one of the trial locations (somewhere like Houston, San Fran, Minn etc to apply) and then if she qualifies, her surgery would be done there and the location of her follow up treatment would depend on the amount of medical intervention necessary.
The real trick though is to make the right choice out of the 117 options.
It would help if they published the data while the trials are ongoing, but in general they don't.

Arthur
Capracus
QUOTE (adoucette+Jun 2 2007, 01:55 PM)
The good news is being a "recurrent" Glioblastoma patient quite a few clinical trial treatments are now available that were not available to her when she was first diagnosed.
About 117 to be exact.
Which is what makes it so very difficult at this stage.
For both medical and practical reasons she can only really apply to one trial as she will have to go to one of the trial locations (somewhere like Houston, San Fran, Minn etc to apply) and then if she qualifies, her surgery would be done there and the location of her follow up treatment would depend on the amount of medical intervention necessary.
The real trick though is to make the right choice out of the 117 options.
It would help if they published the data while the trials are ongoing, but in general they don't.

Arthur
I'm sure most, if not all, are randomized.

If you were to get into a randomized trial and you were not picked for the treatment, do you keep enrolling in a different trial until you are chosen?

Are you involved in cancer forums? If yes, are they helpful?

How would an oncologist decide amongst 117 choices? Probably the same way you're going about it.
adoucette
If you are in a trial and don't get the "treatment" you generally won't know it.

Instead you get what is known as "the Best Standard of Care" or BSC.

Which in my wife's case is fairly useless.

I'm on several forums and they do provide some help, but more on day to day management issues.

I've now narrowed the list down to 22.

Arthur
adoucette
Well we are off to UAB medical center this weekend to evaluate her for a clinical trial that uses a modified scorpion venom as an tumor killing agent (delivered directly via a catheter left in the brain after resection) and then to the Mayo Clinic on Wed to evaluate using a modified strain of the Measles virus as a way of delivering a lethal dose to those damn cancerous glial cells.

Both are early trials so little is known about how effective they are.
My wife decided to go for the High Risk/High Reward route.

Arthur
adoucette
So much for our plans.

The previous tumor resection surgery involved the ventricals and so apparently that rules out all of the key vaccine/venom trials we were interested in.

So we are left with the Chemo route.

We are now applying for a clinical trial that uses a combination of agents, one to surpress Epithelial Growth Factor receptors and one to surpess angiogenesis.

We plan on going back to UAB tomorrow and get more tests (EKG, MRI, X-Ray etc) to see if she qualifies.

Arthur
adoucette
Well we got into the UAB study.

http://clinicaltrials.gov/ct/show/NCT00445...B89036?order=49

The two cancer drugs she is taking are Erlotinib and Sorafenib (everyone in this study gets the drugs, there is no control group getting plecebos!).

The regimen is fairly simple, she takes some pills morning and night.

So far (1 week) no side effects except maybe a reddening of her feet and hands.

None of the doctors thought that surgery was warranted as the cancer is too diffuse for resection.

We have had to up the dose of steroids to 6 mg per day of Decadron.

This has elevated her blood sugar and even with twice the insulin dose we are now struggling to keep her blood sugar under 200.

Arthur
Capracus
QUOTE (adoucette+Jun 30 2007, 06:14 PM)
Well we got into the UAB study.

http://clinicaltrials.gov/ct/show/NCT00445...B89036?order=49

The two cancer drugs she is taking are Erlotinib and Sorafenib (everyone in this study gets the drugs, there is no control group getting plecebos!).

This treatment approach looks like it could hold some promise. Hopefully your wife can tolerate the regime. Good luck.
adoucette
QUOTE (Capracus+Jul 1 2007, 06:07 AM)
This treatment approach looks like it could hold some promise. Hopefully your wife can tolerate the regime. Good luck.

Actually I'm only hoping that it will delay further progression of the disease (and associated degradation of her mental condition) long enough for her to qualify for, or for the Swiss to approve, one of the new Vaccine based treatments.

I think they hold the most promise but we didn't qualify for any of the existing trials.

Arthur
Capracus
QUOTE (adoucette+Jul 1 2007, 01:33 PM)
Actually I'm only hoping that it will delay further progression of the disease (and associated degradation of her mental condition) long enough for her to qualify for, or for the Swiss to approve, one of the new Vaccine based treatments.

I think they hold the most promise but we didn't qualify for any of the existing trials.

Arthur

Sounds like a good plan. I guess the Swiss are expected to decide within the next couple of months, could be any day now.
adoucette
QUOTE (Capracus+Jul 2 2007, 07:13 AM)
Sounds like a good plan. I guess the Swiss are expected to decide within the next couple of months, could be any day now.

I didn't really expect it to be "any day now"

But it was.

- Northwest Biotherapeutics, a US-based biotech company, said Monday it had won approval for commercial use of the world's first vaccine against brain cancer in Switzerland.

Arthur
Capracus
QUOTE (adoucette+Jul 9 2007, 03:49 PM)
- Northwest Biotherapeutics, a US-based biotech company, said Monday it had won approval for commercial use of the world's first vaccine against brain cancer in Switzerland.
It's great to finally see some real hope on the horizon for a change.
QUOTE
The company, which is listed in London, intends to begin making DCVax-Brain available to patients before the end of September, according to a statement.

Is there any possibility for quicker access? If not, I guess you'll be on your way to Switzerland in a couple of months.
adoucette
QUOTE (Capracus+Jul 10 2007, 04:18 AM)
It's great to finally see some real hope on the horizon for a change.

Is there any possibility for quicker access? If not, I guess you'll be on your way to Switzerland in a couple of months.

I'm in touch with the company and will find out.

The real question though is if they can use the tissue that was removed last Sept or does it require fresh tissue (i.e another operation) to make the vaccine.

Arthur
adoucette
QUOTE (adoucette+Jul 9 2007, 11:49 AM)
I didn't really expect it to be "any day now"

But it was.

- Northwest Biotherapeutics, a US-based biotech company, said Monday it had won approval for commercial use of the world's first vaccine against brain cancer in Switzerland.

Arthur

Turns out this was premature.

From their companies web site:

Certain reports have also erroneously indicated that the Company has received a Marketing Authorization from the Swiss authorities. Such reports are incorrect.

As previously announced, the Company applied to the Bundesamt für Gesundheit (“BAG” or “Office Fédéral de la Santé Publique”) for an Authorization for Use (“Autorisation d’exploitation”). NWBT has received such “Autorisation” from the BAG as an import/export authorization (“Autorisation pour activités transfrontalières avec des transplants”). This authorization is conditional upon certain implementation commitments that NWBT will have to fulfill before the import/export activity can proceed (e.g., finalizing its pending arrangements for a clean-room suite for processing of patients’ immune cells.) The process of this fulfillment is under way.

The Authorization will allow the Company to export patients’ immune cells and tumor tissue for vaccine manufacturing in the USA, and import the patients’ DCVax®-Brain finished vaccine into Switzerland.

In the BAG’s processing and decision on the Company’s “Autorisation” application and data, Swissmedic (“Institut Suisse des Agents Thérapeutiques”) only conducted the inspection and did not conduct any evaluation of the safety or efficacy of DCVax®-Brain. Such evaluation by Swissmedic will be done within the assessment of a Marketing Authorization Application. The Company plans to apply for Marketing Authorization by the end of this year. A Marketing Authorization is processed and decided by Swissmedic rather than the BAG, is not limited to selected centers, and allows full marketing and commercialization.



Arthur

adoucette
Exciting new info coming out but a long way from this to something I can actually use to cure my wife.

http://www.pubmedcentral.nih.gov/picrender...04&blobtype=pdf

Arthur
adoucette
Even more exciting info.

This from MD Anderson

http://in.news.yahoo.com/070912/139/6knm4.html

A team of researchers have developed a tailored virus that destroys brain tumour stem cells that resist other treatment and cause re-growth of cancer after surgery.

Delta-24-RGD was tested against the most aggressive brain tumour - glioblastoma multiforme, which originates in the glial cells that surround and support neurons. Being highly resistant to radiation and chemotherapy and invasive, even surgery almost never eliminates it.

...

A clinical quality version of Delta-24-RGD has been manufactured by the National Cancer Institute and an independent consultant has completed a toxicology assessment. An Investigational New Drug Application to proceed with a phase I clinical trial is expected to be filed with the U.S. Food and Drug Administration in September. A clinical trial could began as early as this fall.

Arthur
alexander88
I hope you are right, because I think so too. After all, let’s wait for other opinions and see.

______________________________




www.d0.com.ua | www.d9.com.ua | www.e3.com.ua
adoucette
QUOTE (adoucette+Jun 30 2007, 01:14 PM)
Well we got into the UAB study.

http://clinicaltrials.gov/ct/show/NCT00445...B89036?order=49

The two cancer drugs she is taking are Erlotinib and Sorafenib (everyone in this study gets the drugs, there is no control group getting plecebos!).

The regimen is fairly simple, she takes some pills morning and night.

So far (1 week) no side effects except maybe a reddening of her feet and hands.

None of the doctors thought that surgery was warranted as the cancer is too diffuse for resection.

We have had to up the dose of steroids to 6 mg per day of Decadron.

This has elevated her blood sugar and even with twice the insulin dose we are now struggling to keep her blood sugar under 200.

Arthur

Well we are now out of the UAB study because of her latest MRI.

It showed progression of the disease, and that means we have to go to a different chemo agent.

The last two weeks went like this:

We stopped my wife's Chemo (Erlotinib and Serafenib) Thursday a week ago due to the pain from various skin issues (though her nose was the worst). She then started to complain of headaches that Friday and even though I started her back on Decadron (a powerful Steroid), which got rid of the headaches, but overall, her mental condition continued to slowly deteriorate over the weekend.

Her MRI the following Monday was not good so she was dropped from the UAB clinical trial program due to progression of the cancer. Instead of a tumor though, its diffuse, thus not operable.

Her current condition is that she's having great difficulty talking, she's occasionally hearing things and is often just confused about what is going on around her.
Her ability to interpret what is said to her has declined dramatically, particularly if it involves time (or any number for that matter).

She is no longer in pain though and is sleeping about 18 hours a day.
We started giving her 10 mg of Decadron each day, which is more than she's ever had and 40 times as much as she was taking just two weeks ago. Decadron takes a while to work though, we are now up to 14 mg a day and we think that if we can get the brain swelling under control that she she might get back to near her previous level of function. We've got our fingers crossed, but it will take a while to find out.

Unfortunately, as the doctors point out, when these cancers return they often do so aggressively.

I have been working on getting her on a new treatment program using some new chemos that are still in clinical trials but showing positive results (she doesn't qualify for the actual trials). The UAB doctors think they could be given by her local oncologist outside of a Clinical trial since the existing trial results are long enough and positive enough to justify it.

They suggest trying two different Chemos, Avastin and CPT-11, that would go at the cancers via a different mechanism than the last two she was on. They have their own side effects, but not the same as the ones she has been on, so that would be an improvement. The downside is these chemos are given by IV every other week, still if we do this locally it shouldn't be a logistics problem like getting to UAB was.

In any case, it took another week to get the OK from our Health care provider to foot the bill as the monthly cost will be ~ $10,000, and that just came late Friday, after the local docs had gone, so Monday we'll see about starting her on this new therapy.

Arthur
soundhertz
If there is a waiting time before your wife can participate in a trial, I urge you to try holistic nutritive therapy. I don't believe in it being too late for this, and I've seen impressive and even amazing results. Many therapies do not contraindicate chemotherapy. There are integrative medicine clinics around D.C. as well as Thomas Jefferson in Philly. I tried to find relevant sites dealing with holistic approaches to glioblastoma multiforme. Some of these are testimonial sites and may not be of much use, but you might glean something. Wishing you and yours the best.


www.healingcancernaturally.com/brain-cancer-cure-testimonials.html
www.healingcancer.info/HufelandKlinik.htm
www.lorenzocree.com/
www.cancerdecisions.com/success.html
www.acscsn.org/Forum/Discussion/thread/view?msgid=68144&msgrid=42
www.cancercompass.com/message-board/message/all,20484,0.htm
findarticles.com/p/articles/mi_m0ISW/is_2002_May/ai_85131503
ict.sagepub.com/cgi/reprint/3/2/151.pdf?ck=nck - ..
www.virtualtrials.com/btlinks/index.cfm?catid=2&catname=Alternative%20Medicine
Capracus
QUOTE (adoucette+Feb 17 2008, 07:38 PM)
Well we are now out of the UAB study because of her latest MRI.r
I guess she didn't qualify for this one either.

A Phase II Clinical Trial Evaluating DCVax? ? Brain, Autologous Dendritic Cells Pulsed with Tumor Lysate Antigen for the Treatment of Glioblastoma Multiforme
http://tools.med.nyu.edu/nyuclintrials/ind...=CC&CFID=432270

What happened to Northwest Biotherapeutics plan to make the treatment available in Switzerland?
adoucette
QUOTE (Capracus+Feb 18 2008, 07:06 AM)
I guess she didn't qualify for this one either.

A Phase II Clinical Trial Evaluating DCVax? ? Brain, Autologous Dendritic Cells Pulsed with Tumor Lysate Antigen for the Treatment of Glioblastoma Multiforme
http://tools.med.nyu.edu/nyuclintrials/ind...=CC&CFID=432270

What happened to Northwest Biotherapeutics plan to make the treatment available in Switzerland?

Unfortunately that trial is only for newly diagnosed GBM.

My wife only qualifies for "recurrent" trials.

The NW Pharm press release was a bust. They didn't actually get the ok from Switzerland to administer the vaccine, only to import/export the vaccine.

This whole thing ended up in a lawsuit against NWP for using this press release to raise the price of their stock.

Arthur
adoucette
QUOTE (adoucette+Feb 17 2008, 02:38 PM)
so Monday we'll see about starting her on this new therapy.


Well, it took until Tuesday to get the Authorization from the insurance company to the doctors because of the PD holiday on Monday.

So she had her first CPT-11/Avastin treatment today.

It took almost 5 hours, but was otherwise, no big deal.

The infusion center we went to had semi-private areas for each patient, Each had a big comfortable recliner along with guest chairs and a TVs. They also had a communal kitchen with drinks, coffee, snacks. and a communal lounge with more comfortable sofas, books, magazines, games, a huge half finished jig-saw puzzle to work on etc, etc.

There were maybe 30 or so patients treated over the 5 hours that my wife was there (most for much shorter times).

She got an IV started and then got some prep meds to control her reactions and possible brain swelling.

Then over two periods, an hour and a half each, with a short flush of the line after each med, she got the two chemos.

They use a portable infusion pump, so she could get up and walk around, go to the bathroom, talk to other patients, etc.

She spent most of the time napping however.

Still, except for one bout of diarrhea, she was in no discomfort.

She's napping now (they expect that this will make her lethargic for a day or so) but in no pain.

Next treatment in 2 weeks.

Arthur
"THEY"
Best of luck to you. I still think of you two quite often........
adoucette
QUOTE (adoucette+Feb 20 2008, 05:14 PM)
Well, it took until Tuesday to get the Authorization from the insurance company to the doctors because of the PD holiday on Monday.

So she had her first CPT-11/Avastin treatment today.

It took almost 5 hours, but was otherwise, no big deal.

The infusion center we went to had semi-private areas for each patient, Each had a big comfortable recliner along with guest chairs and a TVs. They also had a communal kitchen with drinks, coffee, snacks. and a communal lounge with more comfortable sofas, books, magazines, games, a huge half finished jig-saw puzzle to work on etc, etc.

There were maybe 30 or so patients treated over the 5 hours that my wife was there (most for much shorter times).

She got an IV started and then got some prep meds to control her reactions and possible brain swelling.

Then over two periods, an hour and a half each, with a short flush of the line after each med, she got the two chemos.

They use a portable infusion pump, so she could get up and walk around, go to the bathroom, talk to other patients, etc.

She spent most of the time napping however.

Still, except for one bout of diarrhea, she was in no discomfort.

She's napping now (they expect that this will make her lethargic for a day or so) but in no pain.

Next treatment in 2 weeks.

Arthur

Well she's had two treatments and her schedule called for another tomorrow, but that is unlikely to happen.

She never recovered her energy after a treatment.

When we took her for her second treatment, she walked in, but we had to take her home in a wheelchair.

Since her second treatment she has been bed ridden.

She can no longer even get up without assistance.

This of course has made even daily hygene issues problematical.

Her food intake has dropped to next to nothing and she is sleeping about 20 hours out of every day.

I finally threw in the towel on Monday and contacted a local Hospice center for planning for end of life care.

The nurse comes by in a few hours.

The disease has not significantly affected her higher reasoning abilities though (i.e. she is quite aware of her surroundings, the people in it, changes in her treatments etc ) and since my wife is a nurse, she is quite aware of what it means when the nurse from Hospice shows up.

A very sad day indeed.

Arthur
"THEY"
Arthur,

I am extremely saddened by this news.

My prayers are with you all.
Capracus
QUOTE (adoucette+Mar 18 2008, 03:50 PM)
Well she's had two treatments and her schedule called for another tomorrow, but that is unlikely to happen.

She never recovered her energy after a treatment.

When we took her for her second treatment, she walked in, but we had to take her home in a wheelchair.

Since her second treatment she has been bed ridden.

She can no longer even get up without assistance.

This of course has made even daily hygene issues problematical.

Her food intake has dropped to next to nothing and she is sleeping about 20 hours out of every day.

I finally threw in the towel on Monday and contacted a local Hospice center for planning for end of life care. 

The nurse comes by in a few hours.

The disease has not significantly affected her higher reasoning abilities  though (i.e. she is quite aware of her surroundings, the people in it, changes in her treatments etc ) and since my wife is a nurse, she is quite aware of what it means when the nurse from Hospice shows up.

A very sad day indeed.

Arthur
A lot of what you describe parallels the experience we had with my brother. The hours of IV chemo in the oncology ward and the eventual point in time when he could no longer tolerate the visits or the treatments.

We always knew the whole objective of his treatment was palliative, but we always behaved as if every small victory mattered.

When we got to the point of hospice, we maintained that it was just until he regains enough strength for further chemo. Eventually though, as you have encountered, you are confronted with realization that it's not going to get better. We never displayed that attitude in my brother's presence, but I'm sure he was aware that he was on the way out.

A couple of fortunate aspects of his condition was that his cancer had left him completely blind and he was unable to visualize his physical deterioration. Also, in his last two weeks, his mental condition became altered in a way that he was in a perpetual dreamlike state that allowed him to experience a noticeably pleasant reality.

Your wife's fortunate to have such a dedicated husband, but then again I'm sure she is deserving of nothing less.
Trippy
QUOTE (adoucette+Mar 19 2008, 04:50 AM)
Well she's had two treatments and her schedule called for another tomorrow, but that is unlikely to happen.

She never recovered her energy after a treatment.

When we took her for her second treatment, she walked in, but we had to take her home in a wheelchair.

Since her second treatment she has been bed ridden.

She can no longer even get up without assistance.

This of course has made even daily hygene issues problematical.

Her food intake has dropped to next to nothing and she is sleeping about 20 hours out of every day.

I finally threw in the towel on Monday and contacted a local Hospice center for planning for end of life care.

The nurse comes by in a few hours.

The disease has not significantly affected her higher reasoning abilities though (i.e. she is quite aware of her surroundings, the people in it, changes in her treatments etc ) and since my wife is a nurse, she is quite aware of what it means when the nurse from Hospice shows up.

A very sad day indeed.

Arthur

Dude, i'm so sorry to here this.
adoucette
Thanks to all who have sent PMs and other posts of support.
It is appreciated.
I always convey them to my wife and it still brings a smile.

We are working with the Hospice to allow us to keep her at home.
Doing it as home care though is not without issues.
We've moved in a hospital bed, portable commode, wheelchair etc
It’s an improvement over the previous arrangement, but its still a challenge to provide good care for someone who essentially can barely physically cooperate with you.
It’s a day to day thing now as her physical condition continues to deteriorate.
I've got the nurse coming by every third day and a nursing assistant every other day.
This morning we gave her an enema and then a laxitive, all to no result though.
Once we get her bowels to move we are going to insert a catheter, as getting her to the commode has become very difficult for my daughter and I to accomplish without risk for her (she only urinates once a day now)
Her physical condition has deteriorated to the extent that she is no longer eating much of anything solid and we are switching to all liquid medications because she can't quite manage the swallowing of pills reliably.
Though she still knows who we all are and can briefly communicate with us, most of the time is now spent on the edge of sleep with her eyes almost closed.
Luckily she's in no pain though and still gets comfort from the touch of her family.

Arthur


adoucette
Well we have had Hospice care at home for two weeks and over that time my wife's condition has continued to deteriorate.

Its been a real struggle and I will just say, the goal of keeping her comfortable, has been a very difficult goal to meet.

Family and friends have come by at a fairly steady stream and thankfully have provided for all our basic needs.

Still, after weeks of fighting, we have decided as a family that what we are doing is more for us then for her and we agreed today to quit the steroid medication and the needle sticks/insulin injections and just administer pain medication if/as necessary.

She now appears to be resting comfortably, for the most part, and all we are providing is water and a clean bed.

I spent much of the day checking out different funeral homes and visiting cemetaries with my oldest daughter.

Tomorrow we will be picking out a headstone and agreeing on the inscription.

Sad days indeed.

Arthur
Trippy
QUOTE (adoucette+Apr 9 2008, 11:21 AM)
Well we have had Hospice care at home for two weeks and over that time my wife's condition has continued to deteriorate.

Its been a real struggle and I will just say, the goal of keeping her comfortable, has been a very difficult goal to meet.

Family and friends have come by at a fairly steady stream and thankfully have provided for all our basic needs.

Still, after weeks of fighting, we have decided as a family that what we are doing is more for us then for her and we agreed today to quit the steroid medication and the needle sticks/insulin injections and just administer pain medication if/as necessary.

She now appears to be resting comfortably, for the most part, and all we are providing is water and a clean bed.

I spent much of the day checking out different funeral homes and visiting cemetaries with my oldest daughter.

Tomorrow we will be picking out a headstone and agreeing on the inscription.

Sad days indeed.

Arthur

man, i'm so sorry, you have my, and my family's deepest sympathies.
TheDoc
QUOTE (adoucette+Apr 8 2008, 11:21 PM)
Well we have had Hospice care at home for two weeks and over that time my wife's condition has continued to deteriorate.

Its been a real struggle and I will just say, the goal of keeping her comfortable, has been a very difficult goal to meet.

Family and friends have come by at a fairly steady stream and thankfully have provided for all our basic needs.

Still, after weeks of fighting, we have decided as a family that what we are doing is more for us then for her and we agreed today to quit the steroid medication and the needle sticks/insulin injections and just administer pain medication if/as necessary.

She now appears to be resting comfortably, for the most part, and all we are providing is water and a clean bed.

I spent much of the day checking out different funeral homes and visiting cemetaries with my oldest daughter.

Tomorrow we will be picking out a headstone and agreeing on the inscription.

Sad days indeed.

Arthur

I'm at a loss for words. My deepest sympathies, Arthur.
Capracus
It doesn't make the loss of your wife any easier, but at least this prolonged nightmare that has incrementally stolen her life is finally coming to an end.

Be strong for your family and accept their comfort. Good luck.
adoucette
Pamela earned her Angel Wings this morning.

She passed peacefully in her sleep in the home she loved with her family around her.

Thank you all for your prayers.

Arthur

El_Machinae
I'm so sorry.
Trippy
Man, I'm so sorry.
TheDoc
QUOTE (adoucette+Apr 9 2008, 11:06 AM)
Pamela earned her Angel Wings this morning.

She passed peacefully in her sleep in the home she loved with her family around her.

Thank you all for your prayers.

Arthur

I suppose it's a small comfort that she's no longer in any pain.

I'm sorry, Arthur.
"THEY"
Arthur, I am very sorry to hear about your loss. My prayers are with you and your family in your time of pain and healing.
tikay
Hello Arthur...This is the first I have seen of this post, and I want to add my condolences to the rest. I love you and I hope you and your family will get through this time without too much grief. I know it was not a shock but that does not lessen the reality of your wifes passing, and I feel for you, and for your darling girls. Give them my love if you will.
Tracey
TaddPeake
I'm so sorry for your great loss. Our prayers are with you and your family.
deadbeat
I know a little something of loss, but cannot imagine the depth of your sorrow, I only wish there were something any of us could do to ease your pain.

I will continue to have you in my prayers, you continue to have my undying respect. Many of us who know you, even so insubstantially as through this simple medium know of your great and incredible patience and persistence, and basic good and kind nature.

My personal recommendation. Give yourself permission to lose it for a little bit. If anyone ever deserved to lean on others and unshoulder that burden for a bit, this is the situation that would seem to call for it. Reach out if you need. Submitting to grief and truly mourning for a while honors the loss you and the world have sustained. I had trouble with that, but of course you probably will do far better than I in this case too.
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