› Forums › General Melanoma Community › Scan Results
- This topic has 14 replies, 6 voices, and was last updated 12 years, 9 months ago by
FormerCaregiver.
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- July 26, 2011 at 10:07 pm
Dacarbazine has not worked for the mets in my lungs unfortunately. Even though I'm disappointed, I'm happy to report that the melanoma is nowhere else in my body, no new tumours appear in my lungs and the ones in my lungs have only grown a wee bit. It is a little comforting knowing that since the end of April, the mets in my lungs are slow growers which puts me in a good position for Yervoy which I'll be starting in 2 weeks (pending brain CT on Friday).
Dacarbazine has not worked for the mets in my lungs unfortunately. Even though I'm disappointed, I'm happy to report that the melanoma is nowhere else in my body, no new tumours appear in my lungs and the ones in my lungs have only grown a wee bit. It is a little comforting knowing that since the end of April, the mets in my lungs are slow growers which puts me in a good position for Yervoy which I'll be starting in 2 weeks (pending brain CT on Friday).
My oncologist is the lead investigator on the trial for IPI here in Toronto and knows his stuff. He reminded me of Jimmy B with all his scientific data which confused the heck out of me 🙂 Clinical trials are the only way to get ipi here in Canada and I'm lucky to be 15 minutes away from the hospital! Hope is certainly not lost!
For the next week, I'm going back to my vitamin/supplement protocol (oh, how I've missed you!) and gearing up for Plan B!
Lisa
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- July 26, 2011 at 10:57 pm
I'm sorry to hear that the decarbazine didn't wipe the tumors out, but glad to hear there was minimal growth. IPI is a good second choice for treatment. Hopefully your body is already doing its job and keeping in contained.
If IPI isn't the trick, they do IL-2 here in Buffalo at Roswell Park. I've even heard that IL-2 after IPI may have a better respose rate. So keep the faith that if IPI doesn't work, you still have other options out there.
Best of luck with Yervoy and keep us posted.
Maria
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- July 26, 2011 at 10:57 pm
I'm sorry to hear that the decarbazine didn't wipe the tumors out, but glad to hear there was minimal growth. IPI is a good second choice for treatment. Hopefully your body is already doing its job and keeping in contained.
If IPI isn't the trick, they do IL-2 here in Buffalo at Roswell Park. I've even heard that IL-2 after IPI may have a better respose rate. So keep the faith that if IPI doesn't work, you still have other options out there.
Best of luck with Yervoy and keep us posted.
Maria
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- July 27, 2011 at 3:44 am
Lisa,
I'm sorry that the DTIC didn't work, but at least the nodules are still small.
Have you talked to a surgeon to see if these spots are in an area of the lungs that would make them be resectable? Since nothing else has shown up during these past months if they are operable that might be an option.
While surgery is not an option for many it has worked for some of us on the board. I've been stage IV for 5 years. Was on a Leukine trial for 1 year, otherwise everything has been surgically removed. They are doing this because I present with 1 tumor at a time. I've had a partial mastectomy, surgery twice in the bladder, behind the clavical, and 2 different nodes in the same arm. I am currently doing radiation in the nodal area on the arm.
It might not be right for you but just wanted to throw in an option that you might not have thought about.
Linda
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- July 27, 2011 at 3:44 am
Lisa,
I'm sorry that the DTIC didn't work, but at least the nodules are still small.
Have you talked to a surgeon to see if these spots are in an area of the lungs that would make them be resectable? Since nothing else has shown up during these past months if they are operable that might be an option.
While surgery is not an option for many it has worked for some of us on the board. I've been stage IV for 5 years. Was on a Leukine trial for 1 year, otherwise everything has been surgically removed. They are doing this because I present with 1 tumor at a time. I've had a partial mastectomy, surgery twice in the bladder, behind the clavical, and 2 different nodes in the same arm. I am currently doing radiation in the nodal area on the arm.
It might not be right for you but just wanted to throw in an option that you might not have thought about.
Linda
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- July 27, 2011 at 5:24 am
Lisa, I am sorry to hear that DTIC hasn't been effective. Partial responses are very
common, with some people achieving a short period of stable disease. The fact that you
have no more areas of metastasis is a good sign.Just wondering if you have discussed the possibility of surgery with your oncologist? This
is usually the best approach for any isolated mets, as it can reduce the systemic tumour
burden considerably.Can you tell me more about your vitamin/supplement protocol?
Good luck with the scan on Friday.
Frank from Australia
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- July 27, 2011 at 10:50 am
Thanks everyone. I'm still in positive spirits even though the news was disappointing. I'm not letting it ruin my life – we're moving to a new house in 5 weeks and I'm here and loving life! My oncologist is amazing! He never talks about statistics or makes me feel I'm doomed. There are still options so you have to remain hopeful always!
Frank, I can't do surgery because I have 15 mets in my lungs – all between 3mm and the biggest measuring 1.3cm. If there were only 3, surgery would be an option. In this case, too much tissue would be compromised. I also asked my onc. how they know that every single one was melanoma – at first he didn't know what to say and then suggested that based on what they've seen in the past on nodules, these present as cancer. I've never had a biopsy, so these smaller ones I have could possibly be nothing.
I'm doing the vitamins because after chemo, I want to give my body some good nutrients. I take 2000 mg of Vitamin C, 3000IU Vitamin D, Curcumin, Green Tea extract, High Potency Multi, Inositol/IP6 and a Green Drink. My oncologist said it's useless, but to make sure I stop a few days before Yervoy. At this point, I'm doing the vitamins for overall health.
Lisa
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- July 27, 2011 at 1:46 pm
Lisa, thanks for clarifying the situation re lung mets. I think that you might be able
increase your vitamin D intake to 5000IU for the time being. However, it would also be
an idea to get your vitamin D level checked the next time your have a blood test.Omega 3 that is found in fish oil capsules is another thing that could be beneficial. I
don't know if a coenzyme Q10 supplement would help, but many people with melanoma
appear to have low levels of it. Echinacea and ginger are herbs that may help, as they
seem to improve the health of the immune system in theory.Please keep your oncologist informed of any vitamins and supplements that you are
taking. Some of the above have side effects (i.e. fish oil is a blood thinner and
shouldn't be taken if one is having surgery) and may interact with other things that
you are taking.Take care
Frank from Australia
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- July 27, 2011 at 1:46 pm
Lisa, thanks for clarifying the situation re lung mets. I think that you might be able
increase your vitamin D intake to 5000IU for the time being. However, it would also be
an idea to get your vitamin D level checked the next time your have a blood test.Omega 3 that is found in fish oil capsules is another thing that could be beneficial. I
don't know if a coenzyme Q10 supplement would help, but many people with melanoma
appear to have low levels of it. Echinacea and ginger are herbs that may help, as they
seem to improve the health of the immune system in theory.Please keep your oncologist informed of any vitamins and supplements that you are
taking. Some of the above have side effects (i.e. fish oil is a blood thinner and
shouldn't be taken if one is having surgery) and may interact with other things that
you are taking.Take care
Frank from Australia
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- July 27, 2011 at 10:50 am
Thanks everyone. I'm still in positive spirits even though the news was disappointing. I'm not letting it ruin my life – we're moving to a new house in 5 weeks and I'm here and loving life! My oncologist is amazing! He never talks about statistics or makes me feel I'm doomed. There are still options so you have to remain hopeful always!
Frank, I can't do surgery because I have 15 mets in my lungs – all between 3mm and the biggest measuring 1.3cm. If there were only 3, surgery would be an option. In this case, too much tissue would be compromised. I also asked my onc. how they know that every single one was melanoma – at first he didn't know what to say and then suggested that based on what they've seen in the past on nodules, these present as cancer. I've never had a biopsy, so these smaller ones I have could possibly be nothing.
I'm doing the vitamins because after chemo, I want to give my body some good nutrients. I take 2000 mg of Vitamin C, 3000IU Vitamin D, Curcumin, Green Tea extract, High Potency Multi, Inositol/IP6 and a Green Drink. My oncologist said it's useless, but to make sure I stop a few days before Yervoy. At this point, I'm doing the vitamins for overall health.
Lisa
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- July 27, 2011 at 5:24 am
Lisa, I am sorry to hear that DTIC hasn't been effective. Partial responses are very
common, with some people achieving a short period of stable disease. The fact that you
have no more areas of metastasis is a good sign.Just wondering if you have discussed the possibility of surgery with your oncologist? This
is usually the best approach for any isolated mets, as it can reduce the systemic tumour
burden considerably.Can you tell me more about your vitamin/supplement protocol?
Good luck with the scan on Friday.
Frank from Australia
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