Peripheral T-cell lymphoma

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, Alzheimer’s, 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 (Hodgkin’s and non-Hodgkin’s), leukemia, Crohn’s 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

po18guy 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!

po18guy 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.

po18guy 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.