@emilypen
Forum Replies Created
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- January 9, 2013 at 5:58 pm
Hi Laurie,
I'm so sorry to hear your news. My heart goes with you on the journey.
When my husband received the same news we too, looked into donating his body, and found that because of the multitude of treatments he had undergone, medical researchers could not use it. There is no way for them to know what drugs/treatments had what effects on the cancer.
However we did find that we could donate pre-treatment biopsy material and slides. You could check with your dr about any clinical trials you've been on and if they would like a post death biopsy but for the most case whatever sample you provided in order to qualify now belong to the trial drug company.
Alternately, check with a medical school in your area, they may be acceptin donations.
May you at peace.
Emily
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- January 9, 2013 at 5:58 pm
Hi Laurie,
I'm so sorry to hear your news. My heart goes with you on the journey.
When my husband received the same news we too, looked into donating his body, and found that because of the multitude of treatments he had undergone, medical researchers could not use it. There is no way for them to know what drugs/treatments had what effects on the cancer.
However we did find that we could donate pre-treatment biopsy material and slides. You could check with your dr about any clinical trials you've been on and if they would like a post death biopsy but for the most case whatever sample you provided in order to qualify now belong to the trial drug company.
Alternately, check with a medical school in your area, they may be acceptin donations.
May you at peace.
Emily
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- January 9, 2013 at 5:58 pm
Hi Laurie,
I'm so sorry to hear your news. My heart goes with you on the journey.
When my husband received the same news we too, looked into donating his body, and found that because of the multitude of treatments he had undergone, medical researchers could not use it. There is no way for them to know what drugs/treatments had what effects on the cancer.
However we did find that we could donate pre-treatment biopsy material and slides. You could check with your dr about any clinical trials you've been on and if they would like a post death biopsy but for the most case whatever sample you provided in order to qualify now belong to the trial drug company.
Alternately, check with a medical school in your area, they may be acceptin donations.
May you at peace.
Emily
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- November 4, 2011 at 10:00 pm
Hey Lisa,
Sorry to hear about the brain mets. On a personal note, my husband had WBR for 6 brain mets in August and we just got the results of his follow brain MRI, all looks great! no new mets and the ones that were there have shrunk dramatically.
We spoke with a number of radiologists about which way to go, gamma knife or WBR and ultimately did WBR because of the chances of more brain mircroscopic brain mets popping up, apparently melanoma likes the brain….
We were also told that having other mets in your lung or spine are good indicator that it might get to the brain.
Side effects were minimal, a little extra fatigue and yes he lost 75% of his hair but all in all very tolerable. And the tretments literally took 5 min.
And since IPI does seem to work on brain perhaps a long term response after taking care of these few mets will show up.
Good luck!
Em
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- November 4, 2011 at 10:00 pm
Hey Lisa,
Sorry to hear about the brain mets. On a personal note, my husband had WBR for 6 brain mets in August and we just got the results of his follow brain MRI, all looks great! no new mets and the ones that were there have shrunk dramatically.
We spoke with a number of radiologists about which way to go, gamma knife or WBR and ultimately did WBR because of the chances of more brain mircroscopic brain mets popping up, apparently melanoma likes the brain….
We were also told that having other mets in your lung or spine are good indicator that it might get to the brain.
Side effects were minimal, a little extra fatigue and yes he lost 75% of his hair but all in all very tolerable. And the tretments literally took 5 min.
And since IPI does seem to work on brain perhaps a long term response after taking care of these few mets will show up.
Good luck!
Em
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- November 4, 2011 at 10:00 pm
Hey Lisa,
Sorry to hear about the brain mets. On a personal note, my husband had WBR for 6 brain mets in August and we just got the results of his follow brain MRI, all looks great! no new mets and the ones that were there have shrunk dramatically.
We spoke with a number of radiologists about which way to go, gamma knife or WBR and ultimately did WBR because of the chances of more brain mircroscopic brain mets popping up, apparently melanoma likes the brain….
We were also told that having other mets in your lung or spine are good indicator that it might get to the brain.
Side effects were minimal, a little extra fatigue and yes he lost 75% of his hair but all in all very tolerable. And the tretments literally took 5 min.
And since IPI does seem to work on brain perhaps a long term response after taking care of these few mets will show up.
Good luck!
Em
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- September 1, 2011 at 12:54 pm
Hi Terra,
Would it make sense to pursue both for now?
Since IL-2 requires testing to qualify and TIL has a 3 month window while they grow cells ( if i'm thinking abou tthe correct treatment) plus they do chemo anyway before the cell transfer. Either way a visit to NIH is a good idea. They may have other trials as well.
That way you'll know which Derek actually qualifies for and haven't wasted anytime pursuing only one of the two?
I had heard there might be a new trial opening at PMH in the fall with Dr. Hogg. I think Lisa on this board mentioned it, but i'm not sure if it's type specific or even what drug it's for.
Em
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- September 1, 2011 at 12:54 pm
Hi Terra,
Would it make sense to pursue both for now?
Since IL-2 requires testing to qualify and TIL has a 3 month window while they grow cells ( if i'm thinking abou tthe correct treatment) plus they do chemo anyway before the cell transfer. Either way a visit to NIH is a good idea. They may have other trials as well.
That way you'll know which Derek actually qualifies for and haven't wasted anytime pursuing only one of the two?
I had heard there might be a new trial opening at PMH in the fall with Dr. Hogg. I think Lisa on this board mentioned it, but i'm not sure if it's type specific or even what drug it's for.
Em
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- August 26, 2011 at 7:49 pm
Hey Lisa,
Jay had bad heartburn long before any type of treatment, and since starting the various clinical trials was put on 150mg of Zantac ( 1 every 12 hrs) if he misses a dose or forgets to take it the heartburn is definitely worse than it has ever been in the past.
I've also noticed he burps more often now… lol
You mentioned in a previous post that you had a rash on your face, he does as well. Just showed up recently and he has just had his 3rd dose.
Em
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- August 26, 2011 at 7:49 pm
Hey Lisa,
Jay had bad heartburn long before any type of treatment, and since starting the various clinical trials was put on 150mg of Zantac ( 1 every 12 hrs) if he misses a dose or forgets to take it the heartburn is definitely worse than it has ever been in the past.
I've also noticed he burps more often now… lol
You mentioned in a previous post that you had a rash on your face, he does as well. Just showed up recently and he has just had his 3rd dose.
Em
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- October 7, 2011 at 7:50 pm
Hi Jim,
We spoke with our oncologist and one other about whether or not to wait before trying the carbo/taxol combo becasue we too thought that IPI might need more time.
Both opinions were the similar, and although they did not rule out response to IPI, the major concern they both had was life expectancy and if IPI did not kick in he may only have a 4-8 weeks. Which may have made him too sick or not here, to handle the chemo if we waited.
Both doctors said that they felt the chemo worked on a different pathway then the IPI and would not effect a late reponse to IPI.
While we know that chemo is not hugely succesfull we were hoping it would at least give more time if the IPI did not work.
The one thing that both docs used a tool to say there were afraid IPI was not working was his lymphocyte count it started at a decent number before IPI then rose after the first infusion, then dropped steadily from then on. It is currently very low.
Is there any research that backs up a low lymph counts and a response to ipi?
thanks,
Emily
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- October 7, 2011 at 7:50 pm
Hi Jim,
We spoke with our oncologist and one other about whether or not to wait before trying the carbo/taxol combo becasue we too thought that IPI might need more time.
Both opinions were the similar, and although they did not rule out response to IPI, the major concern they both had was life expectancy and if IPI did not kick in he may only have a 4-8 weeks. Which may have made him too sick or not here, to handle the chemo if we waited.
Both doctors said that they felt the chemo worked on a different pathway then the IPI and would not effect a late reponse to IPI.
While we know that chemo is not hugely succesfull we were hoping it would at least give more time if the IPI did not work.
The one thing that both docs used a tool to say there were afraid IPI was not working was his lymphocyte count it started at a decent number before IPI then rose after the first infusion, then dropped steadily from then on. It is currently very low.
Is there any research that backs up a low lymph counts and a response to ipi?
thanks,
Emily
-
- October 7, 2011 at 7:50 pm
Hi Jim,
We spoke with our oncologist and one other about whether or not to wait before trying the carbo/taxol combo becasue we too thought that IPI might need more time.
Both opinions were the similar, and although they did not rule out response to IPI, the major concern they both had was life expectancy and if IPI did not kick in he may only have a 4-8 weeks. Which may have made him too sick or not here, to handle the chemo if we waited.
Both doctors said that they felt the chemo worked on a different pathway then the IPI and would not effect a late reponse to IPI.
While we know that chemo is not hugely succesfull we were hoping it would at least give more time if the IPI did not work.
The one thing that both docs used a tool to say there were afraid IPI was not working was his lymphocyte count it started at a decent number before IPI then rose after the first infusion, then dropped steadily from then on. It is currently very low.
Is there any research that backs up a low lymph counts and a response to ipi?
thanks,
Emily
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