› Forums › General Melanoma Community › Dave’s scan results – not what we were hoping for.
- This topic has 24 replies, 5 voices, and was last updated 14 years, 2 months ago by
MariaH.
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- October 27, 2011 at 12:33 am
Well, after waiting 2 hours for the radialogist to read the results of Dave's PET, we got the results. Although Dave's mets in his chest did shrink by about 7mm, there are new mets near where the original LND was. He has a new positive node, and the soft tissue mets have increased in size from approximately 8mm to 1.5cm. His oncologist feels that the decrease in size of the mets in his chest was due to the radiation he had prior to IL-2. Therefore, it was ruled that Dave was not a responder. He wouldn't have done another round anyway. &nb
Well, after waiting 2 hours for the radialogist to read the results of Dave's PET, we got the results. Although Dave's mets in his chest did shrink by about 7mm, there are new mets near where the original LND was. He has a new positive node, and the soft tissue mets have increased in size from approximately 8mm to 1.5cm. His oncologist feels that the decrease in size of the mets in his chest was due to the radiation he had prior to IL-2. Therefore, it was ruled that Dave was not a responder. He wouldn't have done another round anyway. The good news is that his liver and brain still look good, and all the mets seem to be confined to the "general" area of his original spread and in the upper right side of his body.
That being said, he is still taking 40mg of prednisone a day to combat the optic neuropathy. Because of this, he cannot do any form of immunotherapy until he is off of them. This excludes him from taking IPI or a possible anti-pd-1 trial. Since he is B-RAF negative, this is limiting his options.
All is not lost however, as his oncologist has recommended Temodar. I know response rates are low with this chemo and my first thought was that there had to be something better. He handed us a study report of continuous low dose Temodar after unsuccessful HD-IL2, and it was promising. If anybody is interested in it, let me know. This was a study, not a trial (although there is a phase II trial going on right now using this protocol). Of the 9 patients studied, 6 had "an excellect objective response to treatment which occurred fairly rapidly". Two have finished the one year dosing and have complete responses that have been durable without further treatment. And, I might add, these were heavy tumor burdens.
The Temodar should be started within 6-8 weeks after finishing the IL-2, and is administered orally at 75/mg for 21 days per one month cycle. The science behind it makes sense (feel free to chime in Jimmy B!).
So, although not what we were hoping for, it could have been much, much worse. We'll take what we can get and move on.
Best wishes to all the mel warriors out there,
Maria
- Replies
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- October 27, 2011 at 4:17 am
Thanks for the update, Maria. Yes, the results could have been worse.
There are always reasons to be hopeful. Temodar sounds like a good idea, and it is certainly possible that Dave will respond well to it.
Take care
Frank from Australia
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- October 27, 2011 at 4:17 am
Thanks for the update, Maria. Yes, the results could have been worse.
There are always reasons to be hopeful. Temodar sounds like a good idea, and it is certainly possible that Dave will respond well to it.
Take care
Frank from Australia
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- October 28, 2011 at 1:09 am
Thank you Frank. I still remember when you first responded to my post about my brother (he has stage IV peritoneal cancer, and now is at home with hospice). I'll never forget your kind words at what was quite frankly my low point. And I never said thank you, so, thank you.
Best wishes,
Maria
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- October 28, 2011 at 1:09 am
Thank you Frank. I still remember when you first responded to my post about my brother (he has stage IV peritoneal cancer, and now is at home with hospice). I'll never forget your kind words at what was quite frankly my low point. And I never said thank you, so, thank you.
Best wishes,
Maria
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- October 28, 2011 at 1:09 am
Thank you Frank. I still remember when you first responded to my post about my brother (he has stage IV peritoneal cancer, and now is at home with hospice). I'll never forget your kind words at what was quite frankly my low point. And I never said thank you, so, thank you.
Best wishes,
Maria
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- October 27, 2011 at 4:17 am
Thanks for the update, Maria. Yes, the results could have been worse.
There are always reasons to be hopeful. Temodar sounds like a good idea, and it is certainly possible that Dave will respond well to it.
Take care
Frank from Australia
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- October 27, 2011 at 9:54 am
Maria,
I am so sorry to hear about the progression. You both will be in my prayers for the Temador to be successful!
Tricia
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- October 27, 2011 at 11:36 am
Maria,
The investigators have recently observed that many patients who had received high dose
Interleukin-2 (IL2) and failed to respond to it but who then go immediately to temozolomide
seemed to enjoy extremely good responses which seem better quality and longer duration than
typically observed for temozolomide alone. They don't know the mechanism of action, but it may have to do with cell leakage, making the tumor cells more susceptible to Chemo.Temozolomide exhibits schedule-dependent antineoplastic activity by interfering with DNA replication.antineoplastic. Definition: (AN-tee-NEE-oh-PLAS-tick) Said of a drug intended to
inhibit or prevent the maturation and proliferation of cancer cells.The therapeutic benefit of temozolomide depends on its ability to alkylate/methylate DNA. This methylation damages the DNA and triggers the death of tumor cells. However, some tumor cells are able to repair this type of DNA damage, and therefore diminish the therapeutic efficacy of temozolomide, by expressing an enzyme called O-6-methylguanine-DNA methyltransferase (MGMT) or O-6-alkylguanine-DNA alkyltransferase (AGT or AGAT).
I myself did a combination of Temozolmide (DTIC) + a MGMT inhibitor called Patrin-2 prior to doing Anti-CTLA-4 (Yervoy) therapy.
PaTrin–2 (O6-(4-bromothenyl)guanine, PAT) is a potent and scarcely toxic MGMT inhibitor introduced in clinical trials in 2006.
I concur with your oncologist to do the Temozolomide at this time in Dave's therapy.
If it doesn't work, Temozolomide may help prime the immune system by shedding tumor-specific protein that now can be uptaken, processed and displayed on the Antigen Presenting Cells (APCs). The next step is to activate the T-cells by the addition of Anti-CTLA-4 (Yervoy) or Anti-PD-1 therapy. These therapies should remove the suppressive function of the T-Regulatory cells (Tregs) and allow the immune response to proceed.
I believe Dave is now on the right tract to produce an immune response.
All the Best
Jimmy B
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- October 27, 2011 at 11:36 am
Maria,
The investigators have recently observed that many patients who had received high dose
Interleukin-2 (IL2) and failed to respond to it but who then go immediately to temozolomide
seemed to enjoy extremely good responses which seem better quality and longer duration than
typically observed for temozolomide alone. They don't know the mechanism of action, but it may have to do with cell leakage, making the tumor cells more susceptible to Chemo.Temozolomide exhibits schedule-dependent antineoplastic activity by interfering with DNA replication.antineoplastic. Definition: (AN-tee-NEE-oh-PLAS-tick) Said of a drug intended to
inhibit or prevent the maturation and proliferation of cancer cells.The therapeutic benefit of temozolomide depends on its ability to alkylate/methylate DNA. This methylation damages the DNA and triggers the death of tumor cells. However, some tumor cells are able to repair this type of DNA damage, and therefore diminish the therapeutic efficacy of temozolomide, by expressing an enzyme called O-6-methylguanine-DNA methyltransferase (MGMT) or O-6-alkylguanine-DNA alkyltransferase (AGT or AGAT).
I myself did a combination of Temozolmide (DTIC) + a MGMT inhibitor called Patrin-2 prior to doing Anti-CTLA-4 (Yervoy) therapy.
PaTrin–2 (O6-(4-bromothenyl)guanine, PAT) is a potent and scarcely toxic MGMT inhibitor introduced in clinical trials in 2006.
I concur with your oncologist to do the Temozolomide at this time in Dave's therapy.
If it doesn't work, Temozolomide may help prime the immune system by shedding tumor-specific protein that now can be uptaken, processed and displayed on the Antigen Presenting Cells (APCs). The next step is to activate the T-cells by the addition of Anti-CTLA-4 (Yervoy) or Anti-PD-1 therapy. These therapies should remove the suppressive function of the T-Regulatory cells (Tregs) and allow the immune response to proceed.
I believe Dave is now on the right tract to produce an immune response.
All the Best
Jimmy B
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- October 27, 2011 at 12:18 pm
Thanks Jimmy! The Temodar is being used as a "bridge" until Dave is weaned off of the steroids. Since both Yervoy and the anti-pd-1 therapies have optic neuritis as a possible side effect, we need to make sure that the eye issue is completely resolved. In the meantime, there is still the hope that the Temodar alone may produce the desirable effect we are looking for.
We're staying positive and still working towards finding Dave's "magic bullet"!
Best wishes,
Maria
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- October 27, 2011 at 12:18 pm
Thanks Jimmy! The Temodar is being used as a "bridge" until Dave is weaned off of the steroids. Since both Yervoy and the anti-pd-1 therapies have optic neuritis as a possible side effect, we need to make sure that the eye issue is completely resolved. In the meantime, there is still the hope that the Temodar alone may produce the desirable effect we are looking for.
We're staying positive and still working towards finding Dave's "magic bullet"!
Best wishes,
Maria
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- October 28, 2011 at 2:58 pm
Maria,I’m really sorry your husband didn’t respond to il-2, but it’s good news it hasn’t spread to other organs. TEMODAR may do what you hope it does and then hopefully your husband can try ipi or anti pd-1 after the steroids are out of his system and eye problem cleared.
I continue to hope good things for your husband and I’m glad you’re also remaining positive.
Lisa
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- October 28, 2011 at 9:44 pm
Thank you Lisa! Dave had a visit with his opthalmologist today and he confirmed that the eye issues are an autoimmune response. Because of this, he told Dave to slowly taper off the steroids and let the body adjust to each dose before cutting back again.
Hope everything is going well for you also.
Maria
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- October 28, 2011 at 9:44 pm
Thank you Lisa! Dave had a visit with his opthalmologist today and he confirmed that the eye issues are an autoimmune response. Because of this, he told Dave to slowly taper off the steroids and let the body adjust to each dose before cutting back again.
Hope everything is going well for you also.
Maria
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- October 28, 2011 at 9:44 pm
Thank you Lisa! Dave had a visit with his opthalmologist today and he confirmed that the eye issues are an autoimmune response. Because of this, he told Dave to slowly taper off the steroids and let the body adjust to each dose before cutting back again.
Hope everything is going well for you also.
Maria
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- October 28, 2011 at 2:58 pm
Maria,I’m really sorry your husband didn’t respond to il-2, but it’s good news it hasn’t spread to other organs. TEMODAR may do what you hope it does and then hopefully your husband can try ipi or anti pd-1 after the steroids are out of his system and eye problem cleared.
I continue to hope good things for your husband and I’m glad you’re also remaining positive.
Lisa
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- October 28, 2011 at 2:58 pm
Maria,I’m really sorry your husband didn’t respond to il-2, but it’s good news it hasn’t spread to other organs. TEMODAR may do what you hope it does and then hopefully your husband can try ipi or anti pd-1 after the steroids are out of his system and eye problem cleared.
I continue to hope good things for your husband and I’m glad you’re also remaining positive.
Lisa
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- October 27, 2011 at 12:18 pm
Thanks Jimmy! The Temodar is being used as a "bridge" until Dave is weaned off of the steroids. Since both Yervoy and the anti-pd-1 therapies have optic neuritis as a possible side effect, we need to make sure that the eye issue is completely resolved. In the meantime, there is still the hope that the Temodar alone may produce the desirable effect we are looking for.
We're staying positive and still working towards finding Dave's "magic bullet"!
Best wishes,
Maria
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- October 27, 2011 at 11:36 am
Maria,
The investigators have recently observed that many patients who had received high dose
Interleukin-2 (IL2) and failed to respond to it but who then go immediately to temozolomide
seemed to enjoy extremely good responses which seem better quality and longer duration than
typically observed for temozolomide alone. They don't know the mechanism of action, but it may have to do with cell leakage, making the tumor cells more susceptible to Chemo.Temozolomide exhibits schedule-dependent antineoplastic activity by interfering with DNA replication.antineoplastic. Definition: (AN-tee-NEE-oh-PLAS-tick) Said of a drug intended to
inhibit or prevent the maturation and proliferation of cancer cells.The therapeutic benefit of temozolomide depends on its ability to alkylate/methylate DNA. This methylation damages the DNA and triggers the death of tumor cells. However, some tumor cells are able to repair this type of DNA damage, and therefore diminish the therapeutic efficacy of temozolomide, by expressing an enzyme called O-6-methylguanine-DNA methyltransferase (MGMT) or O-6-alkylguanine-DNA alkyltransferase (AGT or AGAT).
I myself did a combination of Temozolmide (DTIC) + a MGMT inhibitor called Patrin-2 prior to doing Anti-CTLA-4 (Yervoy) therapy.
PaTrin–2 (O6-(4-bromothenyl)guanine, PAT) is a potent and scarcely toxic MGMT inhibitor introduced in clinical trials in 2006.
I concur with your oncologist to do the Temozolomide at this time in Dave's therapy.
If it doesn't work, Temozolomide may help prime the immune system by shedding tumor-specific protein that now can be uptaken, processed and displayed on the Antigen Presenting Cells (APCs). The next step is to activate the T-cells by the addition of Anti-CTLA-4 (Yervoy) or Anti-PD-1 therapy. These therapies should remove the suppressive function of the T-Regulatory cells (Tregs) and allow the immune response to proceed.
I believe Dave is now on the right tract to produce an immune response.
All the Best
Jimmy B
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