gray-zone lymphoma

Hello,

 

I saw this forum and because I know how rare this is I wanted to share my wife’s experiences. Hopefully this will help someone.

My wife was recently diagnosed with mgzl (mediastinal gray-zone lymphoma). She is 41 and very healthy otherwise. She has rosacea which is an autoimmune disease and we think that made her more susceptible to Lymphoma. Like most people we had never heard of mgzl and I have found there are only around 300 cases a year. She is in her second round of chemo, DA-R-EPOCH (dose-adjusted - rituximab - etoposide, prednisone, vincristine, cyclophosphamide, doxorubicin) and she is already showing signs of the mass shrinking. 

I immediately started researching the cancer and found the doctor at NIH who named the form of Lymphoma. I emailed him and his partner for advice and the responded back within a day. They suggested we have a second opinion on the pathology of the biopsy by an expert since it is so rare. Her doctor, who has been great (Edward Duda, Fairfield CT) sent it to Dartmouth University hospital to have the second pathology done before we asked which was a relief. You can also have your biopsy sent to NIH and they will give you an expert opinion. The research I found all pointed to the 6 cycle treatment of DA-R-EPOCH and the Dr.’s at NIH confirmed that is the standard treatment if you have mgzl. They treat it like non-Hodgkin’s lymphoma even though it has characteristics of both Hodgkin’s lymphoma and non-Hodgkin’s lymphoma. They also treat her with Prednisone (steroid) and preventative antibiotics (to help her immune system fight disease during her treatment). She is in the hospital for 5 days then sent home for two weeks and returns on the third week. She does this for the 6 cycles roughly 18 weeks.

 

She gets a shot of nuelasta the day after she is home which stimulates the growth of white blood cells in her bone marrow. This is fairly painful because the growing WBC put pressure oin the inside of her bones. I have read some people have excruciating pain and other have very little. We were told she should take Claritin to help with the pain (she takes benedryl tabs since the Claritin keeps her up at night). She gets a strong painful ache from her head to her hips for about 5-7 days after the shot then her WBC is back to normal and she feels fine. Thankfully, she has had no symptoms from the chemo, other than boredom in the hospital and the neulasta only lasts a week. She is eating great and is only tired during the nuelasta week. That week she needs to rest often although she still goes for walks if the weather is nice. She takes a p preventative antibiotic during her time at home and is very careful to avoid anything or anyone that could get her sick. She had constipation from the chemo so she tried miralax but it didn’t work, she ended up taking Senna which worked. Some people have the opposite reaction to chemo so it’s hard to know what is best. She also gets a mouth rinse (salt water) to use after every meal and before bed to kill bacteria in her mouth, again to keep her healthy while her WBC counts are low.

 

She started losing her hair during the second week and her scalp became very sensitive. We shaved her head because it was annoying her to lose big clumps of hair. After about a week her scalp feels fine. We were told once the follicles die the sensitivity goes away, which turned out to be true.

 

Again, I hope this helps.

 

Here are the names and emails of the doctors at NIH who study this cancer and are seen by some as the experts in GZL

 

Dr. Wyndham Wilson - Medical Oncologist – foremost expert on GZL

[email protected]

 


Dr. Kieron Dunleavy - Medical Oncologist – works for Dr. Wilson

[email protected]>

 

 

Dr. Elaine Jaffe – Hematology Pathology - expert in GZL  

[email protected]

 

 

Comments

  • po18guy
    po18guy Member Posts: 1,298 Member
    edited December 2016 #2
    Sorry to hear of the diagnosis

    Despite the rarity of Grey Zone, being a B-Cell Lymphoma, treatment is fairly well established. As your excellent advice notes, pathology is everything in lymphoma. It is extremely difficult to identifiy in some cases, and misdiagnsosis can greatly complicate treatment and lower outcome. You have consulted with the best of the best, so no worries there.

    There are 57 varities of lymphoma currently recognized, with 17 of them being the very rare T-Cell sub-types. "Most" B-Cell sub-types are treated the same, or very similarly, but not always, as some simply behave differently. This is where having a research hematologist can make a huge difference. The absolute latest research and clinical trial results will provide the best tretment options.

    D/A R-EPOCH  is pretty much a standard regimen for certain B-Cell Lymphomas. Minus the Rituxan, I actually had a more intense version of it (CHOEP-14) as induction therapy against a T-Cell Lymphoma, and went from "innumerable" tumors/bone marrow involvement to complete remission. So, based on the response, it sounds like the D/A R-EPOCH is the right choice.

    Controlling the side effects is the concern now, but you also seem to have a good handle on that. Ice chips in her mouth if mucositis arrives, and similar chilling measures if she develps the hand and foot syndrome from the Doxorubicin. The Claritin (perhaps taken in the early morning) does seem to greatly lessen the internal bone pain while receiving Neulasta injectins. Benadryl, as far as I know, has no similar effect, but can produce insomnia or restless leg syndrome in certain people.

    Great advice in your post.