Peripheral T-cell lymphoma
No particular purpose for writting this .. just venting a bit I suppose.
Strangely I have no problem with the concept of dying .. as I figure, the instant one dies ... no matter when or why .. but when that instant occurs .. do you really care what killed you???
So, why should I let it bother me all that much now? The one thing that HAS bothered me is that docitors (even those I have met and not associated with my case) all keep saying that if they didn't know I had terminal cancer, they'd never know .. I look great. I do realize that it can and I am sure will turn on a dime at some point. But it does raise the question ... "What ARE we supposed to look like?" If I knew, I am sure I would pratice looking that way if it helps them.
But ... in looking back ... I never had a problem adjusting to Chemo .. aside from hair loss ... which, for those about to undergo theraphy .. it DOES return. radiation, The only unusal things for me there ...was the target spot did tan (so perhaps an all body tanning cream might help the more vain ... as I think that they would frown on you using a sun block on the target area)Also .. be prepared to be tattooed .. that's right, so if you never considered one .. well, you will be able to brag about that experience ... sadly, they are only reference dots .. I did suggest that they offer something a bit more elabrate, but that idea was not well recieved.
The last two things for your consideration ... one .. I have read nothing in the many, many medical reports I have encountered that indicates that you can not co-exist with your cancer, meaning conviencing it to mature as you do .. thus creating reverse curves, if you will. ALSO, I know this IS weird .. I have talks with mine (the lymphoma) reminding it .. the reality of the situation is that when I die ... IT dies, it doesn't magically leap into someone else's body .. so, if you (meaning the cancer) are not Suicidal - you might want to keep that in mind." Since my cancer has resisted everything thrown at it ... fiesty little bastards, aren't they ... then it may well be safe to say it isn't.
Look, understand as well .. you will have good days and bad days ... on the good day ... go explore ... have adventures, on the bad day ... it is a sigh to catch up on reading, e-mails, old movies, taking naps .. know full well that you will be depressed from time to time ...it is natural... normal... try never to loos perspective .. for me the luxury has been that I go to Hunter-Holmes VA Hospital in Richmond, Va where they have an excellent spinal chord injury facility .. all one need to do is to see some young man who is confined to a whell chair for the rest of his life... perhaps not being able to move from the neck down and look into their eyes and see the spirit ... it becomes difficult to view a terminal illness with much seriousness.
Dale
Comments
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Wow! What a horrible mess to deal with. I'm sorry you have to. Why haven't they explored an unrelated donor for a stem cell transplant? I understand that if your bone marrow shows cancer that they can't use yours, but why not an umbilical cord match? I had my stem cell transplant in 2002. They wanted to use my cells, but had a couple of cords on stand by if needed.0
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Actually neither my doctor nor I were were overly excited about that avenue. While I was there (perhaps that I was a journalist for 25 years was part of the reason) I spent alot of time talking with doctors, reading medical reports(complete reports) and talking with donor receipants. Several things .. one is that while (especially in the abstract portion of the report) it may sound like a donor transplant enjoys a high success rate, it is necessary to read the ENTIRE report, find the particular type of cancer you have and then look at the "numbers" For example the difference in success between "self" and "donor" was marginal at best, and the probability of rejection extremely high. To be blunt, had chance to "interview" several patients who had recieved donor cells and they were back for additional treatment .. they looked terrible .. felt terrible and still ran extreme risk. Another thing that didn't bother me about having to forgo the stem cell route was that with my particular type of cancer, it only slightly increased the odds (if I recall, by no more that 5-10%) so the trade out for that small percentage was only a slight possible chance and NO QUALITY of life. In addition, a recent study I read indicates that High Dose Chemo give as a follow-on to stem cell produces no benifit.dpomroy said:Wow! What a horrible mess to deal with. I'm sorry you have to. Why haven't they explored an unrelated donor for a stem cell transplant? I understand that if your bone marrow shows cancer that they can't use yours, but why not an umbilical cord match? I had my stem cell transplant in 2002. They wanted to use my cells, but had a couple of cords on stand by if needed.
Interestingly with PTCL, the one constant in EVERY report I have read has been a call for research, as there has been virtually none! With PTCL they aren't even remotely close to determining a protocol for dealing with it ... it truly is pissing in the wind.
We even keep close tabs on clinical trials, at last check, I believe there was one .. but that was in phase two, Gee .. I would HATE to participate in that, as phase two is the stage where they detrmine success percentages, and I would hate to come on board and ruin those stats. LOLOLOLOLOL.
According to the numbers, I am entering the "final 24" (months) but again ... those are just numbers, beyond that really I would be in "lottery" territory (and I have a horrid record at winning anything in lotteries)
But back to stem cell ... eveything thing I have read, to be honest .. it is a viable treatment approach, however, the reality is also it is not presently the greatest thing since sliced bread.
But there are more and more programs exploring using the immune system to attack cancer. This I believe is where in the future they will find incredible answers. Interestingly, it brings to mind something a doctor once told me .. he said that everyone has cancer, it is just one of the things we die of, normally your immune system can recognize it and hold it in check (mine recognized it ... relaized that they were old friends and invited it in!) But when they tout to finding a "cure" for cancer, that to me is idiotic .. as there are an incredible array of types of cancer. I often wonder if it is nothing more than a smilely face, feel good comment for those not afflected with the malady.
But, you know the bottom line is that with terminal cancer, all that it really means is that unless we do something stupid like play in traffic, when that time comes... we will know what killed us .. but, when we die ... no matter what of ... no matter when that might be ... the moment we die ... do we really care what killed us???? So actually, why do we need to worry now ..0 -
It sounds like you are pretty resigned to the idea of dying at this point. However, if you are not, if you believe that you still have something to do in this world and people to help and a life to live, here is some information that could help you.
I have recently learned a lot about Macrobiotics, a diet based on eating whole grains and vegetables and that calls for the elimination of meat and dairy from your diet. Researchers have found a connection between animal-based proteins and cancer, diabetes, heart disease, Alzheimers, and many other diseases. Basically, the more meat, dairy, eggs, and processed foods you consume, the more likely you are to get one of the diseases mentioned above. The first stage of cancer (initiation) is caused by carcinogens entering your body. These carcinogens can come from a number of different sources and they cause the initiation stage of cancer. The second stage of cancer is progression. Studies have shown that as a person increases the amount of animal-based proteins in their diet, the faster the rate of progression will be. If a person eliminates animal-based proteins from their diets however, their cancer stops progressing (a remission of sorts). By eating a plant-based whole foods diet, you can actually turn off cancer cell growth! To heal oneself from this diet, a person has to eat specific foods that target the specific cancer that they have. For example, foods like daikon (a type of radish) help break up tumors in the body. Shiitake mushrooms lower blood cholesterol by a huge percentage.
I know this probably sounds crazy, I thought so too at first. You're probably wondering why you've never heard of this before as I was when I heard about this. The reason most people don't know about macrobiotics is because our economy depends largely on the meat and diary industries and many scientists and doctors don't want to admit that cancer, a disease that affects so many people, might be that easy to cure.
Many people are not willing to give this a try. They don't want to believe that many of the foods they love could be killing them. Adopting a macrobiotic lifestyle is certainly less expensive and less painful than paying medical bills and getting massive doses of chemotherapy and radiation. This is definitely something to consider, even if you do consider it an unlikely last resort. I just wanted to let you know about this since you do not seem to have been given much hope. I understand if you can't find it in yourself to believe what I say, but I don't think it's fair to deny you the privilege of knowing that there might be real options for your treatment.
If you are skeptical of what I have just claimed to be true, here is some more information if you are interested in at least learning about Macrobiotics.
The scientific research that shows that this diet works can be found in The China Study, an amazing book by Dr. T. Colin Campbell and Thomas M. Campbell II. This book provides proof that this diet works and explains why/how it works.
The Cancer Prevention Diet- Michio Kushi- "outlines the causes and cures for cancer, [is] filled with testimonies from cancer survivors, [outlines] the different types of cancers, and [has detailed] information on menus, cooking, [and] healing tactics".
Recovery Stories:
1. Becoming Whole -by Meg Wolff-cured of invasive breast cancer
2. My Beautiful Life- Mina Dobic-cured of ovarian cancer
3. When Hope Never Dies-Marlene McKenna-cured of malignant melanoma
4. Recovery from Cancer- Elaine Nussbaum-cured of ovarian cancer
5. Kamikaze Cowboy-Dirk Benedict- cured of prostate cancer
6. Healing Miracles from Macrobiotics- Dr. Jean Kohler and Mary Alice Kolher (cured of pancreatic cancer)
7. Macrobiotic Miracles: How a Vermont Family Overcame Cancer- Virginia Brown and Susan Stayman (malignant melanoma)
8. Cancer-Free- Kit Kitatani- cured of stomach cancer
9. Controlling Crohn's Disease The Natural Way- Virginia Harper
There is much more literature out there, but these are just a few titles.
If reading is not for you, check out youtube. Look up "Diet Saves Their Lives vol.1". There are at least 10 volumes with people telling their stories about how the Macrobiotic diet saved their lives. They include people who have recovered from the following diseases: Lymphoma (Hodgkins and non-Hodgkins), leukemia, Crohns disease, breast cancer, bone cancer, and more.
If this information interests you, there are macrobiotics counselors that are better equipped to explain how the diet works than I am.
If you adopt a Macrobiotic diet and you make sure you are eating foods that give you the right amount of nutrition, what harm could it do to at least give it a try?
If you don't want to give up chocolate and have no desire to at least try to live, that is your choice and I respect that.
Grace0 -
Hello Everyone,Grace10290 said:It sounds like you are pretty resigned to the idea of dying at this point. However, if you are not, if you believe that you still have something to do in this world and people to help and a life to live, here is some information that could help you.
I have recently learned a lot about Macrobiotics, a diet based on eating whole grains and vegetables and that calls for the elimination of meat and dairy from your diet. Researchers have found a connection between animal-based proteins and cancer, diabetes, heart disease, Alzheimers, and many other diseases. Basically, the more meat, dairy, eggs, and processed foods you consume, the more likely you are to get one of the diseases mentioned above. The first stage of cancer (initiation) is caused by carcinogens entering your body. These carcinogens can come from a number of different sources and they cause the initiation stage of cancer. The second stage of cancer is progression. Studies have shown that as a person increases the amount of animal-based proteins in their diet, the faster the rate of progression will be. If a person eliminates animal-based proteins from their diets however, their cancer stops progressing (a remission of sorts). By eating a plant-based whole foods diet, you can actually turn off cancer cell growth! To heal oneself from this diet, a person has to eat specific foods that target the specific cancer that they have. For example, foods like daikon (a type of radish) help break up tumors in the body. Shiitake mushrooms lower blood cholesterol by a huge percentage.
I know this probably sounds crazy, I thought so too at first. You're probably wondering why you've never heard of this before as I was when I heard about this. The reason most people don't know about macrobiotics is because our economy depends largely on the meat and diary industries and many scientists and doctors don't want to admit that cancer, a disease that affects so many people, might be that easy to cure.
Many people are not willing to give this a try. They don't want to believe that many of the foods they love could be killing them. Adopting a macrobiotic lifestyle is certainly less expensive and less painful than paying medical bills and getting massive doses of chemotherapy and radiation. This is definitely something to consider, even if you do consider it an unlikely last resort. I just wanted to let you know about this since you do not seem to have been given much hope. I understand if you can't find it in yourself to believe what I say, but I don't think it's fair to deny you the privilege of knowing that there might be real options for your treatment.
If you are skeptical of what I have just claimed to be true, here is some more information if you are interested in at least learning about Macrobiotics.
The scientific research that shows that this diet works can be found in The China Study, an amazing book by Dr. T. Colin Campbell and Thomas M. Campbell II. This book provides proof that this diet works and explains why/how it works.
The Cancer Prevention Diet- Michio Kushi- "outlines the causes and cures for cancer, [is] filled with testimonies from cancer survivors, [outlines] the different types of cancers, and [has detailed] information on menus, cooking, [and] healing tactics".
Recovery Stories:
1. Becoming Whole -by Meg Wolff-cured of invasive breast cancer
2. My Beautiful Life- Mina Dobic-cured of ovarian cancer
3. When Hope Never Dies-Marlene McKenna-cured of malignant melanoma
4. Recovery from Cancer- Elaine Nussbaum-cured of ovarian cancer
5. Kamikaze Cowboy-Dirk Benedict- cured of prostate cancer
6. Healing Miracles from Macrobiotics- Dr. Jean Kohler and Mary Alice Kolher (cured of pancreatic cancer)
7. Macrobiotic Miracles: How a Vermont Family Overcame Cancer- Virginia Brown and Susan Stayman (malignant melanoma)
8. Cancer-Free- Kit Kitatani- cured of stomach cancer
9. Controlling Crohn's Disease The Natural Way- Virginia Harper
There is much more literature out there, but these are just a few titles.
If reading is not for you, check out youtube. Look up "Diet Saves Their Lives vol.1". There are at least 10 volumes with people telling their stories about how the Macrobiotic diet saved their lives. They include people who have recovered from the following diseases: Lymphoma (Hodgkins and non-Hodgkins), leukemia, Crohns disease, breast cancer, bone cancer, and more.
If this information interests you, there are macrobiotics counselors that are better equipped to explain how the diet works than I am.
If you adopt a Macrobiotic diet and you make sure you are eating foods that give you the right amount of nutrition, what harm could it do to at least give it a try?
If you don't want to give up chocolate and have no desire to at least try to live, that is your choice and I respect that.
Grace
Just wanted to let everyone know, as with all alternative and complementary treatements, be sure to talk with your doctor regarding interactions with current treatments, potential side-effects, and risks associated with foregoing conventional treatment. You can also contact the American Cancer Society's National Cancer Information Center for up to date information on complementary and alternative cancer treatment as well as information on the rare but possible spontaneous remissions that can be associated with cancer. Cancer Information Specialists can be reached 24 hours a day at 1-800-227-2345.
Take care!
Dana0 -
Peripheral T-Cell Lymphoma
Dale, I hope that you are well. I have only recently joined and there are precious few PTCL threads. In 2008, after two mis-diagnoses and being told my symptoms were caused by a virus, I went to a large cancer center. There, I received the correct diagnosis and what amounts to an experimental therapy. "CHOP" is the treatment that most often is mentioned in cases of lymphoma, but PTCL can simply laugh at it. CHOP often reduces your health to such a degree that you cannot then receive or complete an alternative therapy that is more effective, when time is of the essence.
In my case, both surgery and radiation were out. There is no standard treatment for PTCL, so your doctor's experience is crucial. It was decided to give me two months of CHOEP followed by two months of GVD. The reasoning was that the CHOEP would weaken the cancer, then attacking it from an entirely different direction with the GVD would further reduce its advance. PTCL is so aggressive that it can "mutate around" therapy. Thus, it often renders CHOP therapy ineffective. And, CHOP can then leave only the most chemo-resitant cancer cells to clone themselves. Since I was in stage IV with bone marrow involvement, there was likely no time to try a secondary therapy.
In spite of a only a 30% chance of any level of response, my cancer went into remission. However, it came roaring back immediately after chemo. The prognosis went from poor to very poor. I was offered the salvage therapy of ICE, which was all that existed at that time - only three years ago. Providentially, a clinical trial was made available right when the disease proved to be refractory. I signed up for the clinical trial of Romidepsin (aka Depsipeptide, Istodax, FK228), a non-chemo, biological drug which again promised a high 30s percent response rate. I have been blessed with a complete response ever since - 31 months and counting in at this point.
So, the knowledge base in combatting these rare lymphomas is increasing, and hope against this disease is also rising. There is an additional biological drug, and another form of chemotherapy that are now available to combat this, as well.0 -
Stem Cell Transplantpo18guy said:Peripheral T-Cell Lymphoma
Dale, I hope that you are well. I have only recently joined and there are precious few PTCL threads. In 2008, after two mis-diagnoses and being told my symptoms were caused by a virus, I went to a large cancer center. There, I received the correct diagnosis and what amounts to an experimental therapy. "CHOP" is the treatment that most often is mentioned in cases of lymphoma, but PTCL can simply laugh at it. CHOP often reduces your health to such a degree that you cannot then receive or complete an alternative therapy that is more effective, when time is of the essence.
In my case, both surgery and radiation were out. There is no standard treatment for PTCL, so your doctor's experience is crucial. It was decided to give me two months of CHOEP followed by two months of GVD. The reasoning was that the CHOEP would weaken the cancer, then attacking it from an entirely different direction with the GVD would further reduce its advance. PTCL is so aggressive that it can "mutate around" therapy. Thus, it often renders CHOP therapy ineffective. And, CHOP can then leave only the most chemo-resitant cancer cells to clone themselves. Since I was in stage IV with bone marrow involvement, there was likely no time to try a secondary therapy.
In spite of a only a 30% chance of any level of response, my cancer went into remission. However, it came roaring back immediately after chemo. The prognosis went from poor to very poor. I was offered the salvage therapy of ICE, which was all that existed at that time - only three years ago. Providentially, a clinical trial was made available right when the disease proved to be refractory. I signed up for the clinical trial of Romidepsin (aka Depsipeptide, Istodax, FK228), a non-chemo, biological drug which again promised a high 30s percent response rate. I have been blessed with a complete response ever since - 31 months and counting in at this point.
So, the knowledge base in combatting these rare lymphomas is increasing, and hope against this disease is also rising. There is an additional biological drug, and another form of chemotherapy that are now available to combat this, as well.Hello po18guy,
I am so happy to read that you reponded so well to treatment! My daughter's boyfriend, 20 years old, has just been diagnosed with this and I was wondering if you underwent autologous stem cell transplantation. If so where and how are you doing? Thx!
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Sorry to hear thisMamatwy said:Stem Cell Transplant
Hello po18guy,
I am so happy to read that you reponded so well to treatment! My daughter's boyfriend, 20 years old, has just been diagnosed with this and I was wondering if you underwent autologous stem cell transplantation. If so where and how are you doing? Thx!
Thank you very much! Even I am surprised that it has been 9 years since that post. I am into my 13th year now and it's a long complicated story. I had an allogeneic transplant (5/10 match) in 2015. Normally a 5/10 would never be done, but the donor was my son, so those 5 were exact matches. The other 5 were my wife's tissue types and that is where graft-versus-host-disease entered in. That involved several therapies and we have settled on a drug combination that is combating it fairly well.
As to PTCL, there are at least 27 sub-types of T-Cell Lymphoma and the sub-type can make a huge difference in response to therapy. I suggest to all in the US who have difficult diagnoses to consult at a National Cancer Institute designated comprehensive cancer center. They employ the best and brightest, have cutting edge technology and conduct clinical trials which advance medical science. In the case of T-Cell Lymphomas, availaing oneself of the sharpest hematologists can make all the difference. The closest NCI center may be found here: https://www.cancer.gov/research/infrastructure/cancer-centers/find
If remission can be obtained, it is the best time to transplant. Normally, autologous transplants are the first choice. Sadly, T-Cell Lymphomas are very likely to relapse and do cause transplants to fail. The good news in the bad is that not all of them relapse and even if they do, several newer therapies are available. Even CAR-T and now CAR-NK therapies are possible via clinical trial.
One other consideration is that mistakes are made in diagnosis. Lymphoma can be diabolically hard to diagnose. In some cases, Nodular Lymphocyte-predominant Hodgkin's Lymphoma has been mistaken for PTCL and vice versa. I know of at least four cases where T-Cell Lymphomas were misdiagnosed and an ineffective treatment was given. Sadly, those cases ended tragically. Therefore, a second opinion on the pathology report is highly recommended.
Let us know how he does, if you would be so kind.
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Nodular Lymphocyte-predominant Hodgkin's Lymphoma has been mistapo18guy said:Sorry to hear this
Thank you very much! Even I am surprised that it has been 9 years since that post. I am into my 13th year now and it's a long complicated story. I had an allogeneic transplant (5/10 match) in 2015. Normally a 5/10 would never be done, but the donor was my son, so those 5 were exact matches. The other 5 were my wife's tissue types and that is where graft-versus-host-disease entered in. That involved several therapies and we have settled on a drug combination that is combating it fairly well.
As to PTCL, there are at least 27 sub-types of T-Cell Lymphoma and the sub-type can make a huge difference in response to therapy. I suggest to all in the US who have difficult diagnoses to consult at a National Cancer Institute designated comprehensive cancer center. They employ the best and brightest, have cutting edge technology and conduct clinical trials which advance medical science. In the case of T-Cell Lymphomas, availaing oneself of the sharpest hematologists can make all the difference. The closest NCI center may be found here: https://www.cancer.gov/research/infrastructure/cancer-centers/find
If remission can be obtained, it is the best time to transplant. Normally, autologous transplants are the first choice. Sadly, T-Cell Lymphomas are very likely to relapse and do cause transplants to fail. The good news in the bad is that not all of them relapse and even if they do, several newer therapies are available. Even CAR-T and now CAR-NK therapies are possible via clinical trial.
One other consideration is that mistakes are made in diagnosis. Lymphoma can be diabolically hard to diagnose. In some cases, Nodular Lymphocyte-predominant Hodgkin's Lymphoma has been mistaken for PTCL and vice versa. I know of at least four cases where T-Cell Lymphomas were misdiagnosed and an ineffective treatment was given. Sadly, those cases ended tragically. Therefore, a second opinion on the pathology report is highly recommended.
Let us know how he does, if you would be so kind.
Thank you so much. Didn't know about that Nodular part. I'll keep you posted and I'm happy you're doing well.
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It makes no sense but...
Nodular Lymphocyte Predominant Hodgkin's Lymphoma is not a true Hodgkin's. There is talk of re-classing it as a B-Cell Lymphoma, which might help ease some of the confusion. More than likely his pathology report is correct. My first path report was partially correct but completely missedf the malignancy. And, for that reason, double-checking the pathology is crucial.
Personally, it would be interesting to know his sub-type, as each seems to behave slightly differently. There is one subtype called Anaplastic Large Cell Lymphoma (ALCL) which seems to strike some younger patients, but it could be any of them.
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Sub Type HSCTLpo18guy said:It makes no sense but...
Nodular Lymphocyte Predominant Hodgkin's Lymphoma is not a true Hodgkin's. There is talk of re-classing it as a B-Cell Lymphoma, which might help ease some of the confusion. More than likely his pathology report is correct. My first path report was partially correct but completely missedf the malignancy. And, for that reason, double-checking the pathology is crucial.
Personally, it would be interesting to know his sub-type, as each seems to behave slightly differently. There is one subtype called Anaplastic Large Cell Lymphoma (ALCL) which seems to strike some younger patients, but it could be any of them.
Hello po18guy,
I hope you are well.
My daughter's boyfriend had 2 other cancer centers confirm the unfortunate diagnosis of Hepatosplenic T cell Lymphoma. After one injection of Immune therapy they started him on ICE chemo. He has had 1 round and is starting to feel better, and will most likely do 4 rounds hoping for complete remission, and moving on to stem cell transplant.
Do you know anyone who had gone through treatment for HSTCL?
Thank you, be well.
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Treatment may be similar to other T-Cell LymphomasMamatwy said:Sub Type HSCTL
Hello po18guy,
I hope you are well.
My daughter's boyfriend had 2 other cancer centers confirm the unfortunate diagnosis of Hepatosplenic T cell Lymphoma. After one injection of Immune therapy they started him on ICE chemo. He has had 1 round and is starting to feel better, and will most likely do 4 rounds hoping for complete remission, and moving on to stem cell transplant.
Do you know anyone who had gone through treatment for HSTCL?
Thank you, be well.
But there is a certain urgency, as HSTCL is exceedingly rare and aggressive. Virtually zero oncologists have ever seen it and rather few hematologists. I would hope that he can at least consult with a T-Cell specialist at a major cancer center. There is information here: https://www.tcllfoundation.org/blog/learning-corner/learning-corner/hepatosplenic-t-cell-lymphoma-hstcl
In the US, the best centers at which to seek a second opinion and diagnosis/treatment may be found here: https://www.cancer.gov/research/infrastructure/cancer-centers/find
Sadly, with T-Cell Lymphomas, relapse is expected and a second transplant may be needed in some cases.
0
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