Hi Nome,Welcome,sorry about your dad.I don't know anything about that.Always always get a second opinion.Sometimes its the difference between life and death.Not sure how closely related lymphoma and lupus are but my sister in law developed a rash and itch and they were looking for lymphoma that turned out to be lupus.She is on steriods and creams.My best to you and your father.

Thanks.. he was diagnosed from a bone marrow biopsy and lymph node removal.. Your poor sister..I heard Colliodal Minerals are really good for Lupus..take care
Nome

My husband has sezary and he is in treatment. I know this is a very od post, but I wish to let you know that there is palliative relief for those with sezary.

I do not think that anything alleviates the itch completely. It is not believed to be caused by the same mechanism as normal itching. Since steroids, benadryl, and other topical and even systemic agents may not erase it completely, it might have to do with the nervous system between the nerves and the receptors in the brain. Or, the brain may somehow be triggered to perceive the itching (even though no actual itch exists), through some chemical or physical manifestation of the disease at the site, or within the nervous system. I am simply guessing here.

For example, I have nerve damage from a lumbar spine injury. If I kneel too long, I have a sharp, stabbing pain in my left calf - yet there is absolutely nothing wrong with my leg. It is the pathway that would normally carry a pain signal from that area to the brain that is being impinged upon, and so that signal is sent, even though nothing is wrong at the site of the pain. Essentially, it is a short circuit in the nervous system, and this may be what causes the itching with Sezary. I do not think anyone knows for certain.

Speaking of itching...everytime my NHL comes back I develop the itching.The more cancer the more itching.It drives me crazy!The only thing that use to help me is treatment.I have a whole cabinet full of drugs.Although last treatment with Treanda/Rituxan the itch became worse,and I still have skin issues nearly 2yrs later.Hang in there.

Allen, good to research for your dad who may be stressed and fatigued. PO18GUY is a great resource. I apologize but I think I have been spelling the med incorrectly. It is ROMIDEPSIN. We never tried what your are mentioning but I have heard about it. Our doctor is at Northwestern and he has conducted clinical trials on these things. We tried PUVA and that burnt my husband's skin and they were worried about melanoma. He went into a light machine three times a week for that. I guess one could say it helped but not enough, so we moved to Romidepsin. It has side effect but cancer progression (thank God) was not one of them! I THINK PO18GUY has been on it throuogh a clinical trial. For us, it has been FDA-approved and so we are thankful to all who went for the clinical trial because it is proving promising and now that it is FDA-approved....so our insurance covers it. His skin is clear and no itching!

Please stay with us when updates occur. We can learn and give hope to each other. I wish you and your father well....this is a rough disease and so few people know anything about it. Let us know how that blood treatment works.

Susan

PO18GUY:

We are two hours later than you but I have been looking for results on your scan all day. Friend, I hope all is well. Let us know!
Susan

Sorry for not checking in. Thank you for asking! Actually, although there is still the remnant of 'scanxiety" associated with CTs, I have come to view them as "scanticipation" of clean scans. And, it has almost become boring, as they were all clean again. Istodax/Romidepsin is given in 28 day cycles and I have now been clean thorough something like cycle 49.

This is awesome news, PO. Do you know what other cancers they are using this with, or other types of NHL? We know that some centers stick with certain treatments ,ore than others, but you mentioned this as an alternative seeing SCT wasn't. Is it possible that this could be used even if SCT is an option, but instead of because of fewer side effects and risk of Graph vs host disease? Hmmm, I am sure they are still gathering info on what this new drug will do, but it is so encouraging what it has done for you. Thank you for sharing,
Hugs, KB

K.B. This drug is used against all Cutaneous T-Cell Lymphomas, such as Sezary's, as well as systemic Peripheral T-Cell lymphomas, which I believe includes the following: Hepatosplenic, Angioimmunoblastic, Enteropathy-associated T-cell lymphoma, Peripheral T-cell lymphoma-Not-Otherwise-Specified, Lennert lymphoma and Subcutaneous T-cell lymphoma. It truly is a miracle, since T-Cell Lymphomas make up such a tiny segment of the lymphoma world. I do not believe that it would be effective in B-Cell lymphomas, as they are a different animal, but who knows.

Istodax is one of a new breed of "Inhibitor" drugs that are not chemotherapy, but rather, biological in nature. As to the class of drug, it is a Histone Deacetlyase Inhibitor (HDAC). They basically re-boot the cancer cells' DNA, forcing them to reproduce normally and die at the expected time. Another promising class of inhibitor drug is entering clinical trials now against T-Cell Lymphomas: Aurora Kinase Inhibitors, which work in a similar fashion to HDAC inhibitors. I am blessed to live within driving distance of Fred Hutchinson in Seattle. Without their research expertise and cutting edge treatment, I would have expired in 2008.

Istodax/Romidepsin is used in cases of relapsed or refractory disease, in which at least one prior treatment regimen has been employed. In my case, it was intended as a last chance conditioning drug for a transplant, but there was a catch 22: in cases of relapsed T-Cell Lymphomas, an autologous transplant is not considered to be a cure - it only buys time and exposes one to total body radiation, which can trigger other cancers. It has been so effective that a transplant is no longer in the plans. Doctor, a researcher, cited recent studies that show that those who respond long-term to novel therapies such as Istodax, receive all the benefits of a transplant, but without the risk of radiation, mortality or graft-versus-host disease. I cannot receive an allogeneic transplant (unrelated donor), as none can be found in the world donor registry.

In my case, it was Istodax or hospice - a very easy choice to make.

Thank you for that info. I am sure there are others out there that this info may introduce another option for. I am glad they have been working and discovering new treatments for the T cell types, as I know the B cell group is also moving ahead rapidly. I hope both groups understand that this is where a larger research hospital makes a difference in giving you treatment options. But even though not everyone can get to these centers they can use the Internet and open up the discussion with their Oncologist if they are treating a standard way. Being ones's own advocate is mentally hard to do, but it is necessary to ask what other treatment options out there, but more important than that to me is getting a second opinion. Yes, is time consuming, but it is so important to get another set of eyes looking at those scans and biopsies.
again congrats on your clean scans,
God Bless, kb

Before hiring in at the research facility where I am treated, The nurse who works for my doctor had been in oncology for 15 years and had never seen a case of T-Cell Lymphoma. There are certainly many oncologists and pathologists in the same situation. My first oncologist did not think I had cancer. The pathology report found none, yet my lymphatic system was filled with it and it had taken up residence in my bone marrow. The first doctor wanted to wait and see what developed. What would have developed were massive infections and death within a few months.

It is of primary importance to have a correct diagnosis and a treatment plan formulated by a facility with extensive experience in successfully treating your type or sub-type of malignancy. I cannot stress the importance of a second opinion too much.

Susan did you say your husband is in remission? how long has he been on Romidepsin?

Allen: a good thing we have this support group for sharing information. I believe PO... is quite right that we have words wrong here. As I mentioned before, dad may be tired, sick and fed up. My husband's doctors would not give him romidespin if it caused leukemia. They did try PUVA for Seazary to treat the hellish itch and stopped it as they worried that this light therapy could cause Melanoma.

My husband started romidepsin two months ago and went into what I call "remission" within weeks of his first infusion. His skin was red and itchy and scaly just all over his body (his face was spared). It was quite disfiguring and out of control. Within weeks of the first infusion of romidepsin, his skin and the hellish itch was gone. That is what I call "remission" and we will know more on Tuesday to see how it all is going within his body. They take his "Sezary Blood Count" and that is judged by a blood collection. With romidepsin, that count has declined with each blood sample. Will his sezary count ever be ZERO....probably not...but we are palliative here and just keeping the guy alive and doing so with the least amount of misery (itch and disfigurement of skin).

As always, I wish you well. Your dad is lucky to have you!
Susan

http://www.istodax.com/dtc/Default.aspx

There is zero evidence that this drug causes ANY cancer. As I see it, this is a misunderstanding which needs to be cleared up right away with his father and/or the doctor. Such confusion or misinformation may cause someone not to choose a life-saving drug.

The doctor tells you what stage you are. They do scans on your body to see if the cancer has traveled to organs. I feel for your father. When my husband was red like that, he was totally miserable. I hope your father gets the medical help he needs fast. All strong medicines may cause problems,even serious ones, but we were looking at death and at the rate he was going he would have been dead or near it by now if we had not treated his sezary aggressively. I hate to be brutally honest, but as they say, it is what it is.

I think PO and I were posting at nearly the same time.

I am now a member of the Lympohoma Foundation, Allen, and it is not a club I ever wanted to be a part of, but they have been so helpful to me as I braced myself to be an advocate for my husband. Often he is tired and so I needed to push on and do the research and the Foundation has been fantastic. The head of it has even contacted me be email to offer information and support. They can send you the newsletter by email. Perhaps of even more imprtantce to you, they offer free seminars priodically for patients and their caregivers throughout the US. I know you are in Canad but you may want to look into one for you and your dad. If interested, I can send you the email.

Susan

I just edited what I wrote because I was feeling sorry for myself in my last post. I guess no way to delete.

I want to thank you, PO, for all your expertise and encouragement. This is all a rough road and we need people like you who help us. The pictures and information on the interent are just awful when one is dealing with one's best friend in all the world. Allen, Sezary disfigures people. My husband and I have been together for over 40 years. We actually kinda grew up togther and I am just trying so damn hard to keep him with me. Feeling sorry for yourself just doesn't do any good.

So take care and thanks!
Susan

Romidepsin/Depsipeptide/FK228 9and others) are the scientific or research names of the drug. Istodax is the trademarked product name for Romidepsin as manufactured by Gloucester Pharmaceuticals, which is a division of Celgene. The EU does not regulate the molecule named Romidepsin, as it is not sold as such. The EU is regulating Celgene as that company threads its way through the maze of European Union regulations for sale of the drug. This whole mess is due to the hurdles that Celgene must jump with EU regulatory agencies in order to sell the drug on the market in Europe. It has nothing to do with the drug's safety or effectiveness.

Oh, I lost my original post.

Paul had his appointment with the Northwestern "Sezary Doctor" and he is in REMISSION! Oh, I am so happy! Of course this remssion could be short-lived but it is the reprieve I wanted/needed/begged God for ... for us.

PO, they are talking about MAYBE reducing romidepsin to 2 rather than 3 a month. I do not think Paui cares as he is just thrilled he is in remission. REMISSION is the sweetest word. CURED is sweeter but that may not be heard in Paul's lifetime

Allen, I hope your dad is okay. Keep us posted

Allen, it sounds like he is going through a tough time. I am sorry. Do whatever your doctor tells you to do but here is what we learned and perhaps you can pass this by his doctor if he/she has not passed it by you:

1. The itch is awful and one palliative measure would be really strong pain meds, but as a last resort... Not knowing where your dad is at stage-wise, how can you know. He would need to be under supervision for this.

2. An anti-anxiety drug might help. I think you asked about marijuana. That is now legal for medicinal purposes in some states and I do not know about Canada. You might want to ask the doctor about that if it is even available.

3. Before romdiepsin, my husband was on light treatment. He never tried that blood cleansing, although I have heard of it. We were told that most people succumb not from the direct disease of sezary but because of sepsis or bacterial infections, pneumonia and other things due to his compromised skin. When things were at their worse for us, he wore gloves. I am tending to think that uf they are doing that, his marrow must be okay but I really know so little.

Whether you believe in prayer or not, Allen, I am praying for you and your dad. Take care of yourself too!

Susan

Allen, I know PO is much better informed than I, so he may clairfy what I am saying or understand to be true. We were told that Paul was stage 4 from the beginning. Remember we had trapsed from doctor to doctor and we even thought he was allergic to our cat. Little did we know what we were in for. I think it took five months to get to the right diagnosis. Finally he was diagnosed by a dermatologist who had seen one case of it when interning (or whatver they call it) at Mayo. He was completely red and itching fiercely and shedding all over the place. It was heartbreaking for me. He told me it was an itch from hell and was on the "inside" of his skin. He took benedrayl but this itch defied anti-itch meds. I do not believe he had plaques but I am not sure exactly what ethey are) and no tumors. His skin was what I would term MOTTLED. He then had cat scans and they saw that the organs were not involved. I do not know about the marrow. They feel his lymph nodes and they say they are "normal" but they have not biopsied them. They told us that he was STAGE 4 but Sezary stage 4 is not like, for example Lung Cancer stage 4. They do not talk about stage too much, but he was labeled stage 4 and I think that is based on the sezary blood count. He did have very bad hands and feet and wore the gloves to and socks to keep the germs from getting into the cracks as that could be his demise. He was on antibiotics periodically and he did just get the flu shot (his first in life). The worse part was about four-five months ago and then he started the romidepsin (he has been through four cycles). My husband is 64. When he had the bad skin, he needed to take daily bleach baths to protect his body from opportunistic diseases. ALL of these things are up to the doctor who knows the patient best.

We have the romidespin come to us as our insurance gives us a hard time about going to Northwestern for the infusions. We have a great doctor at Northwestern that our insurance pays for because he is the only guy in Chicago who knows about Sezary and treats it but insurance insists his romidepsin is administered by an oncologist locally. We are very lucky the two doctors have agreed to this.

This has been wordy, but I needed to clarify some things. Thanks for the prayers. Susan