› Forums › General Melanoma Community › That’s It.
- This topic has 12 replies, 6 voices, and was last updated 12 years, 8 months ago by
nicoli.
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- July 7, 2011 at 7:04 am
I finished my radiation treatments then Dr. gave me a chemo with 2 medicines and I don't know what all. Anyway about 2 days later I was the sickest individual without dieing which I wanted to do. Any way this went on for 10 days and am still not well. Went to an Oncologist yesterday and he made it quite clear. Since I want no more chemo, he suggested I look into Hospice plans. That I am doing. I am still not quite convinced it is the Melanoma on the spine that is doing it.
I finished my radiation treatments then Dr. gave me a chemo with 2 medicines and I don't know what all. Anyway about 2 days later I was the sickest individual without dieing which I wanted to do. Any way this went on for 10 days and am still not well. Went to an Oncologist yesterday and he made it quite clear. Since I want no more chemo, he suggested I look into Hospice plans. That I am doing. I am still not quite convinced it is the Melanoma on the spine that is doing it. Radiation must not have stopped it. I am going to ask if I could take another CT scan just so I can see. Last one was nearly a month ago. But the Dr. I talked to seems to think it is all over the body . I am taking a lot of pain medication for pain in right hip. Guess that could be coming from the spine.
Having heart disease for over 40 years, and melanoma for about 5 years, enough is enough. I am 79 and have had a good life. Retired for 17 yrs. and that is not bad. Except that someday I would like to go all day without pain.
I don't much about Hospice Care but will find out the next few days. Thanks to all
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- July 7, 2011 at 11:16 am
I just wanted to make you aware that in instances of the spine, radiation is usually used for pain mamagement and at times to clean up a surgery area in hopes of getting stray cells.
May hospice assist you in making your journey as pain free as possible.
And, congrats on being retired for 17 years and being 79. I guess you can no longer call yourself NEBR78.
Best wishes to you,
Michael
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- July 7, 2011 at 11:16 am
I just wanted to make you aware that in instances of the spine, radiation is usually used for pain mamagement and at times to clean up a surgery area in hopes of getting stray cells.
May hospice assist you in making your journey as pain free as possible.
And, congrats on being retired for 17 years and being 79. I guess you can no longer call yourself NEBR78.
Best wishes to you,
Michael
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- July 7, 2011 at 12:25 pm
Charles,
Before you make any decisions, do ask for that one more CT scan so you can be exactly sure of what is going on with your body.
It does sound like you've had a full life with many years of retirement to enjoy. Who are we to say when you've had enough. Your pain medsd need to be watched . I agree that a pain free day would be a blessing.
Please let us hear from you. If they get you on the right combo for pain you should feel much better and can hopefully remain active. Ask about accupuncture to help relieve the pain.
Linda
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- July 7, 2011 at 12:25 pm
Charles,
Before you make any decisions, do ask for that one more CT scan so you can be exactly sure of what is going on with your body.
It does sound like you've had a full life with many years of retirement to enjoy. Who are we to say when you've had enough. Your pain medsd need to be watched . I agree that a pain free day would be a blessing.
Please let us hear from you. If they get you on the right combo for pain you should feel much better and can hopefully remain active. Ask about accupuncture to help relieve the pain.
Linda
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- July 7, 2011 at 12:43 pm
I'm so sorry to hear that things have not been improving for you. As my husband is also having Chemo, I know what you mean about the sickness. It can be pretty brutal. Still, I am surprised that your doctor hasn't been more proactive about keeping you more comfortable?
There are many drugs they can give you to minimize the chemo sickness. I wonder how proactive your doctor is. Also, I don't understand why he hasn't involved a palliative care team before now to get your pain better managed.
Honestly, I wonder if you couldn't do more chemo if your symptoms were better managed?
No matter what your decision, I strongly dislike your doctor. There is no excuse for a patient being in pain and not trying to fix that problem. And the way he seems to be shuffling you off to hospice ticks me off on your behalf. Is this doctor a melanoma specialist, I wonder? Did they ever test you for BRAF to see if you might qualify for a trial? There is a compassionate use trial that you might qualify for if you are. It works quickly, so if you qualified, the difference would come in just a couple weeks.
Michelle, wife of Don
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- July 7, 2011 at 12:43 pm
I'm so sorry to hear that things have not been improving for you. As my husband is also having Chemo, I know what you mean about the sickness. It can be pretty brutal. Still, I am surprised that your doctor hasn't been more proactive about keeping you more comfortable?
There are many drugs they can give you to minimize the chemo sickness. I wonder how proactive your doctor is. Also, I don't understand why he hasn't involved a palliative care team before now to get your pain better managed.
Honestly, I wonder if you couldn't do more chemo if your symptoms were better managed?
No matter what your decision, I strongly dislike your doctor. There is no excuse for a patient being in pain and not trying to fix that problem. And the way he seems to be shuffling you off to hospice ticks me off on your behalf. Is this doctor a melanoma specialist, I wonder? Did they ever test you for BRAF to see if you might qualify for a trial? There is a compassionate use trial that you might qualify for if you are. It works quickly, so if you qualified, the difference would come in just a couple weeks.
Michelle, wife of Don
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- August 1, 2011 at 6:06 am
Since I have given up any more chemo, the have me on Morphine. That stuff can give you some funny feeling also. Lite in head, dizzy, nausea (sort of). At least the pain is gone. I reduced Morphine some on my own. it helps
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- August 1, 2011 at 7:41 am
I hate it that you've reached this point, but do have much understanding and compassion for your situation. I have looked for the path that seemed to provide me the best chance with the least pain from the chemo as well. The short recovery time from each IL-2 treatment week was why I went that way. A one week for 80% return was doable even though many Oncs don't want to use it on us older guys (many don't try it on the young either). It held me long enough for a targeted drug with few side effects to be available on an off label basis by my Onc.
Dr Papa at MD Anderson has been using what appears to be a unique direct treatment of the brain and spinal column melanoma with IL-2. His treatment has removed the melanoma from those sites in some patients.
Either way, I am pulling for freedom from pain. I have had enough of that in my life.
Praying for freedom from pain and the ability to enjoy our remaining time.
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- August 1, 2011 at 7:41 am
I hate it that you've reached this point, but do have much understanding and compassion for your situation. I have looked for the path that seemed to provide me the best chance with the least pain from the chemo as well. The short recovery time from each IL-2 treatment week was why I went that way. A one week for 80% return was doable even though many Oncs don't want to use it on us older guys (many don't try it on the young either). It held me long enough for a targeted drug with few side effects to be available on an off label basis by my Onc.
Dr Papa at MD Anderson has been using what appears to be a unique direct treatment of the brain and spinal column melanoma with IL-2. His treatment has removed the melanoma from those sites in some patients.
Either way, I am pulling for freedom from pain. I have had enough of that in my life.
Praying for freedom from pain and the ability to enjoy our remaining time.
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