› Forums › General Melanoma Community › Last ditch effort…
- This topic has 66 replies, 11 voices, and was last updated 12 years, 6 months ago by
mygirlmaddy.
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- September 10, 2011 at 11:52 am
Once again, we have gotten bad news. Before we give up and agree to palliative care (as our oncologist wants), I am turning to all of you for any suggestions. After nine months of being stable, although not cancer free, my husband's cancer has begun to spread. It is still not on any organs, but nearly all of the lymph node sites are involved. He also had a tumor on his wrist that our doctors rushed to have removed as it was eating through his bone. He has tried IL2, Ipi, is BRAF wildtype and steroid dependent (due to hypofecitis from Ipi use) and
Once again, we have gotten bad news. Before we give up and agree to palliative care (as our oncologist wants), I am turning to all of you for any suggestions. After nine months of being stable, although not cancer free, my husband's cancer has begun to spread. It is still not on any organs, but nearly all of the lymph node sites are involved. He also had a tumor on his wrist that our doctors rushed to have removed as it was eating through his bone. He has tried IL2, Ipi, is BRAF wildtype and steroid dependent (due to hypofecitis from Ipi use) and too sick to qualify for most clinical trials. Radiation successfully reduced the size and pain of a few of his tumors, but it's not a cure and his doctor doesn't want to keep radiating him knowing that it won't truly fix the problem. She wants him to start Temodar to possibly slow the progression. He is nauseous and vomitting more than he is not.
I don't want him or anyone else, myself included, to feel that we didn't do everything we could. If anyone has suggestions for something we didn't try, I'd love to hear it.
- Replies
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- September 10, 2011 at 12:20 pm
I'm truly sorry you and your family are going through this. It's a tough disease and so disappointing that more people arn't completley responding to treatment.
The only two other treatments I can think of is Anti PD1 and TIL therapy, but I'm not too sure if your husband can participate in these trials considering his illness. Although I would never preach alternative over modern medicine, there is a woman on this board who had lung and brain mets. She chose not to do any treatment other than holistic – astralagus, mistletoe injections and some other herb. She is now NED. If I personally was in the same boat as your husband, I'd be going this route, especially if there wasn't anything else being offered to me. Besides, mistletoe has been shown to help with nausea for chemo patients.
On another note, if your husband is reluctant to try anything else – including chemo, you have to respect his wishes. As his wife, I know you're going to fight with everything you've got and I wish you both all the very best.
Don't give up!
Lisa – Stage 4
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- September 10, 2011 at 4:48 pm
I wonder if they could do a compassionate use of Anti PD 1…right now the trials exclude anyone who has done Ipi. It's not a miracle drug however..I know a girl who was on my trial and was about 3 treatments ahead of me..she was surgically made NED just a month before starting it. She began having a lot of little melanomas pop up all over her lungs while on the trial and they took her off. She has since passed away/ :o(
It's scary when the doctors give up on you, but keep fighting. They gave up on me and I was desparately scared. Had to find trials and do everything myself because my doctors only wanted palliative care. Call the NIH, call all the major trial sites, scan and e-mail the records.
Cry a little, cry a lot but keep going.
Lynn- Stage 4 NED since March 26, 2010
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- September 10, 2011 at 4:48 pm
I wonder if they could do a compassionate use of Anti PD 1…right now the trials exclude anyone who has done Ipi. It's not a miracle drug however..I know a girl who was on my trial and was about 3 treatments ahead of me..she was surgically made NED just a month before starting it. She began having a lot of little melanomas pop up all over her lungs while on the trial and they took her off. She has since passed away/ :o(
It's scary when the doctors give up on you, but keep fighting. They gave up on me and I was desparately scared. Had to find trials and do everything myself because my doctors only wanted palliative care. Call the NIH, call all the major trial sites, scan and e-mail the records.
Cry a little, cry a lot but keep going.
Lynn- Stage 4 NED since March 26, 2010
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- September 12, 2011 at 2:27 pm
Hi Lisa,
Thank you for responding. We have explored TIL at NIH and it was determined that my husband was not well enough to withstand treatments. We also talked about the PD1 (if this is the cutaneous injection) with our oncologist but she did not feel it was appropriate for Eric. I am again, thinking it's because he has been so sick and is steroid dependent. Unfortunately, he is resistant to alternative therapies. I truly appreciate your willingness to help and your kind words.
Take care,
Audrey
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- September 12, 2011 at 2:27 pm
Hi Lisa,
Thank you for responding. We have explored TIL at NIH and it was determined that my husband was not well enough to withstand treatments. We also talked about the PD1 (if this is the cutaneous injection) with our oncologist but she did not feel it was appropriate for Eric. I am again, thinking it's because he has been so sick and is steroid dependent. Unfortunately, he is resistant to alternative therapies. I truly appreciate your willingness to help and your kind words.
Take care,
Audrey
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- September 10, 2011 at 12:20 pm
I'm truly sorry you and your family are going through this. It's a tough disease and so disappointing that more people arn't completley responding to treatment.
The only two other treatments I can think of is Anti PD1 and TIL therapy, but I'm not too sure if your husband can participate in these trials considering his illness. Although I would never preach alternative over modern medicine, there is a woman on this board who had lung and brain mets. She chose not to do any treatment other than holistic – astralagus, mistletoe injections and some other herb. She is now NED. If I personally was in the same boat as your husband, I'd be going this route, especially if there wasn't anything else being offered to me. Besides, mistletoe has been shown to help with nausea for chemo patients.
On another note, if your husband is reluctant to try anything else – including chemo, you have to respect his wishes. As his wife, I know you're going to fight with everything you've got and I wish you both all the very best.
Don't give up!
Lisa – Stage 4
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- September 10, 2011 at 1:34 pm
Really sorry to hear of this news. My wife is on Temodar (and steroids and anti-seizure meds) and she is experiencing no side effects on a low dose (100mg per day) regimen. We aren't certain at this point that it's working, but because it isn't adding to her side effect burden it's been worth trying.
I'm not buying the doctor's line about not using radiation because it won't fix the problem. Of course it won't. But it can buy time. Or avoid pain. That can be very worthwhile. And why can't the nausea be controlled? There are many good anti-nausea meds out there. If that can be controlled, and radiation treatment can address tumors which emerge in organs (the ability of cyberknife and tomo therapy radiation to controll tumors in the body is becoming more and more amazing), giving up now becomes less of an obvious choice.
Offering you strength and peace,
Nick
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- September 12, 2011 at 2:31 pm
Hi Nick,
Our doctor is willing to use radiation, but doesn't want to focus my husband's treatment around something that isn't a cure. She has readily prescribed radiation up to this point. We just started Eric's first round of Temodar with Emend, so far so good. As for his nauseau, he has been dealing with nausea and vomitting since before he was even diagnosed with cancer. We have yet to determine what is causing it, despite having several specialists run tests. Thank you for taking the time to respond.
Audrey
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- September 12, 2011 at 2:31 pm
Hi Nick,
Our doctor is willing to use radiation, but doesn't want to focus my husband's treatment around something that isn't a cure. She has readily prescribed radiation up to this point. We just started Eric's first round of Temodar with Emend, so far so good. As for his nauseau, he has been dealing with nausea and vomitting since before he was even diagnosed with cancer. We have yet to determine what is causing it, despite having several specialists run tests. Thank you for taking the time to respond.
Audrey
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- September 10, 2011 at 1:34 pm
Really sorry to hear of this news. My wife is on Temodar (and steroids and anti-seizure meds) and she is experiencing no side effects on a low dose (100mg per day) regimen. We aren't certain at this point that it's working, but because it isn't adding to her side effect burden it's been worth trying.
I'm not buying the doctor's line about not using radiation because it won't fix the problem. Of course it won't. But it can buy time. Or avoid pain. That can be very worthwhile. And why can't the nausea be controlled? There are many good anti-nausea meds out there. If that can be controlled, and radiation treatment can address tumors which emerge in organs (the ability of cyberknife and tomo therapy radiation to controll tumors in the body is becoming more and more amazing), giving up now becomes less of an obvious choice.
Offering you strength and peace,
Nick
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- September 10, 2011 at 1:35 pm
Very sorry to read this. I am a little unclear as to the extent of your husband's melanoma, so I wonder if you could clarify a couple things? Are you saying that it is only in the lymph nodes near the surface, and maybe in the wrist bone? Has he had whole body scans recently?
I have looked at your husband's profile and I couldn't see any mention of metastasis in the internal organs. If this is correct, then perhaps the situation may not be as dire as one might expect?
Frank from Australia
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- September 12, 2011 at 2:38 pm
Hi Frank,
My husband just had scans a week ago which revealed the tumor in his wrist and several (7 or so) new positive lymph nodes. He also has two tumors on the vein leading in to the pancreas that show signs of growth. He has several subcutaneous tumors that have also grown since appearing in nov/dec 2010. These new tumors are the first new growth since then. He has been very sick at times and the doctors are reluctant to try anything that might make that worse (uncontrollable nausea and vomitting).
I'm not sure what to think at this point. Finding out that the cancer has started to spread was a difficult blow, and our doctor has led us to believe that we should start preparing for the worst. I lost a friend to melanoma about 10 years ago, and once her cancer spread, she was gone very quickly, so that weighs heavily on my mind.
I appreciate any insight you could share.
Thanks,
Audrey
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- September 12, 2011 at 2:38 pm
Hi Frank,
My husband just had scans a week ago which revealed the tumor in his wrist and several (7 or so) new positive lymph nodes. He also has two tumors on the vein leading in to the pancreas that show signs of growth. He has several subcutaneous tumors that have also grown since appearing in nov/dec 2010. These new tumors are the first new growth since then. He has been very sick at times and the doctors are reluctant to try anything that might make that worse (uncontrollable nausea and vomitting).
I'm not sure what to think at this point. Finding out that the cancer has started to spread was a difficult blow, and our doctor has led us to believe that we should start preparing for the worst. I lost a friend to melanoma about 10 years ago, and once her cancer spread, she was gone very quickly, so that weighs heavily on my mind.
I appreciate any insight you could share.
Thanks,
Audrey
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- September 13, 2011 at 12:09 pm
Audrey, I have a few more questions. Firstly, I am concerned about the vomiting. When did it start and how bad is it at the moment?
Are the tumours leading to the pancreas actually on the vein itself, or are they in the lymph nodes nearby? As surgery is usually the best option, has a surgical oncologist been consulted about them and the wrist tumour?
Best wishes
Frank from Australia
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- September 13, 2011 at 10:22 pm
Hi Frank,
The vomitting started nearly a year before he was diagnosed. He has been to a GI doc and nothing was found, including the 2nd opinion GI doc. Right now, as in today, he is feeling ok. He gets high dose IV steroids weekly and oral steroids daily. Both GI docs think it's something in is head (as in nausea control center, not imagined). The wrist tumor has been removed and the space filled with cement. He is still recovering from that surgery. The two tumors near the pancreas are on the vein. He just finished radiation on them a week or so before we found the new tumors. It's been our oncologists opinion (as well as the surgeon) that operating on the internal tumors is not realistic as they would have to keep cutting him up to get more as they appear and they don't feel he is healthy enough.
Thank you for giving of yourself and taking the time to respond.
Audrey
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- September 14, 2011 at 2:21 am
Audrey, it looks like the initial vomiting problem is unrelated to melanoma and is
probably neurological in nature. What complicates things is the fact that many melanoma
treatments have nausea and vomiting as possible side effects. It is encouraging that
your husband is feeling ok at the moment.Is any radiation treatment planned for the site of his wrist tumour?
Although local surgery for metastatic melanoma has been a controversial topic, it has
recently been shown to have definite benefits. This is because resection of any area of
melanoma has the effect of reducing the overall tumour burden, and may improve one's
prognosis. See:
http://journals.lww.com/melanomaresearch/Fulltext/2008/02000/Evidence_and_interdisciplinary_consensus_based.10.aspxThanks for your kind words.
Frank from Australia
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- October 4, 2011 at 4:56 pm
Hi Frank,
I haven't been on in a while, but just found this post. We have an appointment this afternoon with the radiologist, but there are so many tumors now that I think they plan to focus on a few others that are causing more problems. I'm not sure what to think about the fact that the tumors seem to be spreading and growing exponentially. There are several large tumors, but also small tumors appearing daily. I'm afraid of what that might mean. For the first time in all of this process, my husband had abdominal pain at our oncology visit last Friday. I read posts on here of people with tumors of the brain, kidneys, pancreas, etc that sound optimistic about a treatment, but we are being led to believe that we are short on time despite no major organs being affected yet. I want to ask the hard questions of our doctor, but then I have to live with the answers.
My husband is starting carboplatin (sp?) and taxol on Thursday of this week. Our local oncologist wants to refer us to a brand new clinical trial if that doesn't work. He tried temodar, but had rapid growth and spreading. I'm feeling like we've exhausted our viable options, but afraid I'm missing something.
You are right that the nauseau is neurological. Emend, which shuts down the nerve center controlling nausea, worked wonders. He is just starting to feel nausea again after being off the emend for about two weeks. Insurance is sticky about approving ongoing use of this drug as it's very expensive.
Thanks again for your insight and willingness to put yourself out there for all of us.
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- October 5, 2011 at 2:26 am
Audrey,
Best of luck to you and your husband on the carboplatin/taxol. My husband had a really great response to this combination and his melanoma, while not spreading in the same places as your husband's, is also extremely aggressive. His response made him well enough to qualify for a trial and it definitely prolonged his life.
I really hope things work well for you.
Michelle, wife of Don
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- October 5, 2011 at 2:30 pm
Hi Michelle,
Thanks for the encouragement and sharing your positive experience. I'm glad that your husband found something that gave him a chance to keep trying.
Audrey
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- October 5, 2011 at 2:30 pm
Hi Michelle,
Thanks for the encouragement and sharing your positive experience. I'm glad that your husband found something that gave him a chance to keep trying.
Audrey
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- October 5, 2011 at 2:30 pm
Hi Michelle,
Thanks for the encouragement and sharing your positive experience. I'm glad that your husband found something that gave him a chance to keep trying.
Audrey
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- October 5, 2011 at 2:26 am
Audrey,
Best of luck to you and your husband on the carboplatin/taxol. My husband had a really great response to this combination and his melanoma, while not spreading in the same places as your husband's, is also extremely aggressive. His response made him well enough to qualify for a trial and it definitely prolonged his life.
I really hope things work well for you.
Michelle, wife of Don
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- October 5, 2011 at 2:26 am
Audrey,
Best of luck to you and your husband on the carboplatin/taxol. My husband had a really great response to this combination and his melanoma, while not spreading in the same places as your husband's, is also extremely aggressive. His response made him well enough to qualify for a trial and it definitely prolonged his life.
I really hope things work well for you.
Michelle, wife of Don
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- October 5, 2011 at 4:56 am
Thank you, Audrey. As you may know, melanoma is unpredictable in how it behaves. However, once the tumour burden reaches a certain point it does tend to spread and grow quickly. I can understand how you might be feeling regarding how much time your husband has before his condition deteriorates significantly. But nothing is certain with melanoma, and sometimes people have unexpectedly good responses to treatments.
I think that it is important to have a definite treatment plans in mind with options that may be possible. So, if one treatment doesn't work I think that it is wise to have a plan B, plan C, etc.
It is great that Emend has been effective in controlling the nausea. Hopefully, your husband will respond well to the chemo.
Best wishes
Frank from Australia
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- October 5, 2011 at 2:35 pm
Thanks again. I'm hoping to be able to report a positive response soon.
Audrey
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- October 5, 2011 at 2:35 pm
Thanks again. I'm hoping to be able to report a positive response soon.
Audrey
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- October 5, 2011 at 2:35 pm
Thanks again. I'm hoping to be able to report a positive response soon.
Audrey
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- October 5, 2011 at 4:56 am
Thank you, Audrey. As you may know, melanoma is unpredictable in how it behaves. However, once the tumour burden reaches a certain point it does tend to spread and grow quickly. I can understand how you might be feeling regarding how much time your husband has before his condition deteriorates significantly. But nothing is certain with melanoma, and sometimes people have unexpectedly good responses to treatments.
I think that it is important to have a definite treatment plans in mind with options that may be possible. So, if one treatment doesn't work I think that it is wise to have a plan B, plan C, etc.
It is great that Emend has been effective in controlling the nausea. Hopefully, your husband will respond well to the chemo.
Best wishes
Frank from Australia
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- October 5, 2011 at 4:56 am
Thank you, Audrey. As you may know, melanoma is unpredictable in how it behaves. However, once the tumour burden reaches a certain point it does tend to spread and grow quickly. I can understand how you might be feeling regarding how much time your husband has before his condition deteriorates significantly. But nothing is certain with melanoma, and sometimes people have unexpectedly good responses to treatments.
I think that it is important to have a definite treatment plans in mind with options that may be possible. So, if one treatment doesn't work I think that it is wise to have a plan B, plan C, etc.
It is great that Emend has been effective in controlling the nausea. Hopefully, your husband will respond well to the chemo.
Best wishes
Frank from Australia
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- October 4, 2011 at 4:56 pm
Hi Frank,
I haven't been on in a while, but just found this post. We have an appointment this afternoon with the radiologist, but there are so many tumors now that I think they plan to focus on a few others that are causing more problems. I'm not sure what to think about the fact that the tumors seem to be spreading and growing exponentially. There are several large tumors, but also small tumors appearing daily. I'm afraid of what that might mean. For the first time in all of this process, my husband had abdominal pain at our oncology visit last Friday. I read posts on here of people with tumors of the brain, kidneys, pancreas, etc that sound optimistic about a treatment, but we are being led to believe that we are short on time despite no major organs being affected yet. I want to ask the hard questions of our doctor, but then I have to live with the answers.
My husband is starting carboplatin (sp?) and taxol on Thursday of this week. Our local oncologist wants to refer us to a brand new clinical trial if that doesn't work. He tried temodar, but had rapid growth and spreading. I'm feeling like we've exhausted our viable options, but afraid I'm missing something.
You are right that the nauseau is neurological. Emend, which shuts down the nerve center controlling nausea, worked wonders. He is just starting to feel nausea again after being off the emend for about two weeks. Insurance is sticky about approving ongoing use of this drug as it's very expensive.
Thanks again for your insight and willingness to put yourself out there for all of us.
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- September 14, 2011 at 2:21 am
Audrey, it looks like the initial vomiting problem is unrelated to melanoma and is
probably neurological in nature. What complicates things is the fact that many melanoma
treatments have nausea and vomiting as possible side effects. It is encouraging that
your husband is feeling ok at the moment.Is any radiation treatment planned for the site of his wrist tumour?
Although local surgery for metastatic melanoma has been a controversial topic, it has
recently been shown to have definite benefits. This is because resection of any area of
melanoma has the effect of reducing the overall tumour burden, and may improve one's
prognosis. See:
http://journals.lww.com/melanomaresearch/Fulltext/2008/02000/Evidence_and_interdisciplinary_consensus_based.10.aspxThanks for your kind words.
Frank from Australia
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- September 13, 2011 at 10:22 pm
Hi Frank,
The vomitting started nearly a year before he was diagnosed. He has been to a GI doc and nothing was found, including the 2nd opinion GI doc. Right now, as in today, he is feeling ok. He gets high dose IV steroids weekly and oral steroids daily. Both GI docs think it's something in is head (as in nausea control center, not imagined). The wrist tumor has been removed and the space filled with cement. He is still recovering from that surgery. The two tumors near the pancreas are on the vein. He just finished radiation on them a week or so before we found the new tumors. It's been our oncologists opinion (as well as the surgeon) that operating on the internal tumors is not realistic as they would have to keep cutting him up to get more as they appear and they don't feel he is healthy enough.
Thank you for giving of yourself and taking the time to respond.
Audrey
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- September 13, 2011 at 12:09 pm
Audrey, I have a few more questions. Firstly, I am concerned about the vomiting. When did it start and how bad is it at the moment?
Are the tumours leading to the pancreas actually on the vein itself, or are they in the lymph nodes nearby? As surgery is usually the best option, has a surgical oncologist been consulted about them and the wrist tumour?
Best wishes
Frank from Australia
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- September 10, 2011 at 1:35 pm
Very sorry to read this. I am a little unclear as to the extent of your husband's melanoma, so I wonder if you could clarify a couple things? Are you saying that it is only in the lymph nodes near the surface, and maybe in the wrist bone? Has he had whole body scans recently?
I have looked at your husband's profile and I couldn't see any mention of metastasis in the internal organs. If this is correct, then perhaps the situation may not be as dire as one might expect?
Frank from Australia
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- September 10, 2011 at 1:36 pm
Very sorry to hear about your husband's situation – 'IF' you have no more options (I stress on the IF because the western world has a poor view of alternative treatments for various reasons) – you can try Yoga combined with Siddha medicine (this is local to South India) – .
I am a Melanoma stage 3b survivor (NED since Sep 2008) – I sincerely believe that Yoga helped me survive – of course there will be a dozen members on this board who will get upset with my statements – but truth is truth.
Recently one of my close friends who is siffering from Sarcoma of the thigh (doctors here have given up on him) – he flew to South India (I can give you details if you want) – spent a month and a half undergoing the 'Siddha' treatment and he has returned back and working again – doctors are puzzled about his recovery and his tumors arte rapidly shrinking.
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- September 12, 2011 at 2:40 pm
Thank you for responding. I think that many of the eastern medicines work for people because they believe in them. Unfortunately, my husband is not open to alternative therapy. Despite repeated attempts to just get him to allow a friend to perform Reiki/massage on him, he has refused. I'm glad your friend found success, and hope that you do as well.
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- September 12, 2011 at 2:40 pm
Thank you for responding. I think that many of the eastern medicines work for people because they believe in them. Unfortunately, my husband is not open to alternative therapy. Despite repeated attempts to just get him to allow a friend to perform Reiki/massage on him, he has refused. I'm glad your friend found success, and hope that you do as well.
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- September 10, 2011 at 1:36 pm
Very sorry to hear about your husband's situation – 'IF' you have no more options (I stress on the IF because the western world has a poor view of alternative treatments for various reasons) – you can try Yoga combined with Siddha medicine (this is local to South India) – .
I am a Melanoma stage 3b survivor (NED since Sep 2008) – I sincerely believe that Yoga helped me survive – of course there will be a dozen members on this board who will get upset with my statements – but truth is truth.
Recently one of my close friends who is siffering from Sarcoma of the thigh (doctors here have given up on him) – he flew to South India (I can give you details if you want) – spent a month and a half undergoing the 'Siddha' treatment and he has returned back and working again – doctors are puzzled about his recovery and his tumors arte rapidly shrinking.
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- September 10, 2011 at 3:30 pm
What about taxol and carboplatin combo? It might be helpful in slowing things down and shrinking the tumor burden….
Are you with a melanoma specialist?
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- September 12, 2011 at 2:42 pm
Hi Lori,
I will ask our oncologist. I think she mentioned it before and opted for Temodar for now. Our current oncologist is not a melanoma specialist, but we were with Dr. Lawrence at Mass General center for Melanoma and have him as a resource.
Thanks,
Audrey
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- September 12, 2011 at 2:42 pm
Hi Lori,
I will ask our oncologist. I think she mentioned it before and opted for Temodar for now. Our current oncologist is not a melanoma specialist, but we were with Dr. Lawrence at Mass General center for Melanoma and have him as a resource.
Thanks,
Audrey
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- September 10, 2011 at 3:44 pm
First of all, I am very sorry for your news, although I have seen many folks on this board report stories of remission and recovery when it did not seem possible.
I am pretty conservative so alternative diets and medicine did not strike me as valid treatments for cancer. I really need to see some stats other than just anecdotal reporting. Well, my sister just gave me the book, Knockout, by Suzanne Somers (ha, ha, I thought ditzy actress, what can she know?) and I was totally floored. I read the book in two days. All of the oncologists who write chapters in the book are from the top cancer centers in the United States and they have done studies to back up their statements. There are sections on what foods to eat for what types of cancer and the chemistry behind it. For those oncologists who are treating patients (some are only doing research), there are testimonials from many patients. When I saw the actual workings of food, medicine, and the body, it all made sense.
Now, I am not young, so some changes I am not really willing to make. But it is possible to benefit by integration and also making SOME changes. I have to say that the book really opened my eyes to other possiblities, and maybe it could help you and your husband, as well. I hope so.
Cristy, Stage IV
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- September 12, 2011 at 2:45 pm
Hi Cristy,
I am willing to research anything that might make a difference, so your recommendation is much appreciated. I will get a copy of the book.
Best wishes to you for a full recovery or the ability to gracefully accept and use your situation to make a difference.
Audrey
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- September 12, 2011 at 2:45 pm
Hi Cristy,
I am willing to research anything that might make a difference, so your recommendation is much appreciated. I will get a copy of the book.
Best wishes to you for a full recovery or the ability to gracefully accept and use your situation to make a difference.
Audrey
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- September 10, 2011 at 3:44 pm
First of all, I am very sorry for your news, although I have seen many folks on this board report stories of remission and recovery when it did not seem possible.
I am pretty conservative so alternative diets and medicine did not strike me as valid treatments for cancer. I really need to see some stats other than just anecdotal reporting. Well, my sister just gave me the book, Knockout, by Suzanne Somers (ha, ha, I thought ditzy actress, what can she know?) and I was totally floored. I read the book in two days. All of the oncologists who write chapters in the book are from the top cancer centers in the United States and they have done studies to back up their statements. There are sections on what foods to eat for what types of cancer and the chemistry behind it. For those oncologists who are treating patients (some are only doing research), there are testimonials from many patients. When I saw the actual workings of food, medicine, and the body, it all made sense.
Now, I am not young, so some changes I am not really willing to make. But it is possible to benefit by integration and also making SOME changes. I have to say that the book really opened my eyes to other possiblities, and maybe it could help you and your husband, as well. I hope so.
Cristy, Stage IV
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- September 10, 2011 at 5:01 pm
I was put on temodar during the second week of radiaiton because they said it makes melanoma more reactive to radiation. They kept me on Temodar from July 2009 to March 2010. The melanoma was stable until January or Feburary 2010- so it did appear to hold mine down and I had no spread during that time. My melanoma begun to grow in Janu or feb so they took me off in March. Temodar made me sick…I had to take 2 anti puke meds starting the day before my 1st dose every 28 day cycle.Temodar is not a cure…far from it, but it did give me time I needed to find something else and science to come out with better alternitives.It is expensive, it makes you really really tired, and I didn't feel like eating a lot the week I was on it and the following week. About the time I was getting my energy back and feeling good again it was time for the next treatment …Lynn
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- September 10, 2011 at 5:01 pm
I was put on temodar during the second week of radiaiton because they said it makes melanoma more reactive to radiation. They kept me on Temodar from July 2009 to March 2010. The melanoma was stable until January or Feburary 2010- so it did appear to hold mine down and I had no spread during that time. My melanoma begun to grow in Janu or feb so they took me off in March. Temodar made me sick…I had to take 2 anti puke meds starting the day before my 1st dose every 28 day cycle.Temodar is not a cure…far from it, but it did give me time I needed to find something else and science to come out with better alternitives.It is expensive, it makes you really really tired, and I didn't feel like eating a lot the week I was on it and the following week. About the time I was getting my energy back and feeling good again it was time for the next treatment …Lynn
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- September 10, 2011 at 7:25 pm
Temodar is not likely to be a cure, but can be a not too bad holding action. I would nnot totally dismiss that trreatment. I would be more interestd in getting in a PD-! trial if possible. The TIL treatments are pretty tough and one has to be in shape to withstand the treatment and havng the time for growing the cells in the trial as well as meeting the criteria for getting into the trial
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- September 12, 2011 at 2:48 pm
Thanks for the encouragement. We did go ahead and start the Temodar two days ago. I am going to research the PD1 again. I think we were told that he did not qualify, but I can't remember.
Best wishes to you.
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- September 12, 2011 at 2:48 pm
Thanks for the encouragement. We did go ahead and start the Temodar two days ago. I am going to research the PD1 again. I think we were told that he did not qualify, but I can't remember.
Best wishes to you.
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- September 10, 2011 at 7:25 pm
Temodar is not likely to be a cure, but can be a not too bad holding action. I would nnot totally dismiss that trreatment. I would be more interestd in getting in a PD-! trial if possible. The TIL treatments are pretty tough and one has to be in shape to withstand the treatment and havng the time for growing the cells in the trial as well as meeting the criteria for getting into the trial
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- September 11, 2011 at 2:15 am
I noticed that your profile hasn't been updated in a bit. Is your husband still seeing Dr. Lawrence? I, too, am a bit confused as to what kind of spread he has. You said that most all his lymph nodes are involved…you mean systemically? Or do you mean that he has soft tissue tumors/lymph node tumors?
I don't know if this will help you or not, but my husband was quite sick back in May, and had run out of options. He had tried to get into the GSK BRAF/MEK trial, but he turned out to not be well enough. (My husband's mel is incredibly aggressive and it had spread to bones, lungs and liver) At that point, Dr. Lawrence gave him the option of chemo or palliative care. My husband was determined to fight, even though the chance of the chemo helping at all was only about 20%.
He put my husband on a combination of Carboplatin and Taxol. His response was WAY more than Dr. Lawrence ever expected. He said he'd never seen a response like his to chemo with a mel patient ever…as good or better than what he was seeing on BRAF trials.
He ended up doing 4 rounds of carbo/taxol and by the end, his under arm tumor shrank from softball size to chickpea size, his lung tumors were all but gone and his liver tumors had shrunk to about half. It made him well enough to get onto the Compassionate Use Zelboraf trial, which is what he is on now.
I have heard that carbo/taxol/temodar has been a relatively successful combination for mel also (well, as well as chemo gets for mel…). While I'm not saying your husband would have the same results, perhaps the chemo (and perhaps in combination with some radiation) might beat back some of the tumor burden and maybe then he could qualify for a trial that could help him further (like Anti PD 1, or perhaps TIL at the NIH?).
Also, I am assuming they are giving your husband Zofran or Reglan or something like that and it's not doing it for the nausea/vomiting? My husband had BRUTAL nausea/vomiting while he was on chemo and those meds weren't working. Then we realized that perhaps movement was setting off his vomiting events (even if he moved a little, sat up from lying down, etc). One the nurses recommended the Scopalamine patch for him (by Rx only). It's for motion sickness and it's a patch that stays on for 3 days at a time. That patch was a Godsend! We were amazed! By the second day on the patch, most all his nausea and vomiting was gone! Perhaps this solution might work for your husband?
Thinking of you (my children are similarly aged to your daughter) and hoping the very best for you both!
Michelle, wife of Don
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- September 11, 2011 at 2:15 am
I noticed that your profile hasn't been updated in a bit. Is your husband still seeing Dr. Lawrence? I, too, am a bit confused as to what kind of spread he has. You said that most all his lymph nodes are involved…you mean systemically? Or do you mean that he has soft tissue tumors/lymph node tumors?
I don't know if this will help you or not, but my husband was quite sick back in May, and had run out of options. He had tried to get into the GSK BRAF/MEK trial, but he turned out to not be well enough. (My husband's mel is incredibly aggressive and it had spread to bones, lungs and liver) At that point, Dr. Lawrence gave him the option of chemo or palliative care. My husband was determined to fight, even though the chance of the chemo helping at all was only about 20%.
He put my husband on a combination of Carboplatin and Taxol. His response was WAY more than Dr. Lawrence ever expected. He said he'd never seen a response like his to chemo with a mel patient ever…as good or better than what he was seeing on BRAF trials.
He ended up doing 4 rounds of carbo/taxol and by the end, his under arm tumor shrank from softball size to chickpea size, his lung tumors were all but gone and his liver tumors had shrunk to about half. It made him well enough to get onto the Compassionate Use Zelboraf trial, which is what he is on now.
I have heard that carbo/taxol/temodar has been a relatively successful combination for mel also (well, as well as chemo gets for mel…). While I'm not saying your husband would have the same results, perhaps the chemo (and perhaps in combination with some radiation) might beat back some of the tumor burden and maybe then he could qualify for a trial that could help him further (like Anti PD 1, or perhaps TIL at the NIH?).
Also, I am assuming they are giving your husband Zofran or Reglan or something like that and it's not doing it for the nausea/vomiting? My husband had BRUTAL nausea/vomiting while he was on chemo and those meds weren't working. Then we realized that perhaps movement was setting off his vomiting events (even if he moved a little, sat up from lying down, etc). One the nurses recommended the Scopalamine patch for him (by Rx only). It's for motion sickness and it's a patch that stays on for 3 days at a time. That patch was a Godsend! We were amazed! By the second day on the patch, most all his nausea and vomiting was gone! Perhaps this solution might work for your husband?
Thinking of you (my children are similarly aged to your daughter) and hoping the very best for you both!
Michelle, wife of Don
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- September 12, 2011 at 2:53 pm
Hi Michelle,
Thank you for responding and for sharing. My husband has tried many different anti nausea meds, including the scopalomine patch and many drugs via IV with no success. The nausea is a deeper issue than just reacting to meds or the melanoma. He has had a full workup by a GI doc and given drugs for "anxiety", as well as the other usual suspects but nothing has worked other than high dose steroids via IV which makes him feel better for a few days at a time.
We just started Temodar and with that, he was given Emend. So far, he is not feeling nauseous, so we are hoping that he will be ok for at least a little while.
I appreciate your response.
Audrey
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- September 12, 2011 at 2:53 pm
Hi Michelle,
Thank you for responding and for sharing. My husband has tried many different anti nausea meds, including the scopalomine patch and many drugs via IV with no success. The nausea is a deeper issue than just reacting to meds or the melanoma. He has had a full workup by a GI doc and given drugs for "anxiety", as well as the other usual suspects but nothing has worked other than high dose steroids via IV which makes him feel better for a few days at a time.
We just started Temodar and with that, he was given Emend. So far, he is not feeling nauseous, so we are hoping that he will be ok for at least a little while.
I appreciate your response.
Audrey
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- September 11, 2011 at 3:06 am
I don't know the treatments to recommend, but I just wanted to tell you I am sorry your are struggling right now. I wish both of you luck in finding what will work…and I will add you to my prayers for good results. Beth 3/B
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- September 12, 2011 at 3:07 pm
Just looked up the anti pd-1, aka MDX 1106. After reading the information, it is a trial that we tried to get in to but were told that it is closed to my husband. I don't remember if it is because he is braf wildtype or the stage that he's at. This is specifically the trial at Dartmouth-Hitchcock in NH. If anyone knows of an open trial for stage IV, BRAF wildtype and ecog 2, I would appreciate any information.
Thanks
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- September 13, 2011 at 11:12 am
Sorry, confusing my trials MDX 1106 was being offered at NIH, but they wouldn't admit my husband because he is not healthy enough.
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- September 13, 2011 at 11:12 am
Sorry, confusing my trials MDX 1106 was being offered at NIH, but they wouldn't admit my husband because he is not healthy enough.
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- September 12, 2011 at 3:07 pm
Just looked up the anti pd-1, aka MDX 1106. After reading the information, it is a trial that we tried to get in to but were told that it is closed to my husband. I don't remember if it is because he is braf wildtype or the stage that he's at. This is specifically the trial at Dartmouth-Hitchcock in NH. If anyone knows of an open trial for stage IV, BRAF wildtype and ecog 2, I would appreciate any information.
Thanks
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