Non-hodgkin's Lymphoma Support Group
Non-Hodgkin lymphoma is a type of cancer arising from lymphocytes, a type of white blood cells. It is so called because of its distinction from Hodgkin's disease, a particular subtype of lymphoma. It is in fact an overarching term of many different forms of lymphoma, each with individual characteristics. Most cases start with infiltration of lymph nodes, but specific...
Got the results of the PET/CT scan. Not good. The messenteric mass with 16 SUV and 5.4cm x 8.2 cm increased by almost 300% to 8.4 cm x 14.4 cm and the SUV increased to 20!. Completely encasing my colon (but no significant pain, yet). So we are stopping the Bendamustine and Dr. Cheson gave me 2 options. Since he is the lead researcher in a phase 2 clinical trials study with 2 arms (small cell and large cell), he put my name into Genentech for approval. I was turned down since I have both small and large cell. They were looking to test their drugs against either small or large cell (but not both in the same patient). So here we go with plan B - goal get me into remission to commence an ASCT ASAP. This ones lovely: I will be admitted later today into Georgetown Hospital Lombardi Cancer Center for 5 to 6 days. The protocol involves a Part A and a Part B (developed for fast cell growing leukemia). Believe it or not, Part A involves 5 days (24 hrs/day) of essentially R-CHOP (without the Prednisone). Then Neulasta shot when I get out. Then on day 14 another infusion of Vincristine (really concerned about the neuropathy (remember, I am a bass player - last time it went away after a short while). Then when my blood levels return, I will be admitted again for Part B (Cytarabine, Methotrexate and Leucovorin). This is one cycle. I don't know how many cycles he is looking for prior to the next PET/CT scan. I'm hoping 2 (4 hospitalizations).
I went out yesterday to find pajamas (you can't find mens PJs with buttoned tops - I have a Mediport). So I went to Kohls and bought some inexpensive fleece shirts to where there.
Got my will, living will, durable power of attorney, and living trust material witnessed and notarized last night. Seems like this is a great time to have those in place.
The last time I was an inpatient was 55 years ago, when I swallowed a quarter. A bit anxious about this, but really, at this point don't have much choice, so I am just kinda numb.
I emailed Cheson yesterday to look for clarification about why Part A could be used (especially in light of the fact that I have previously had 4 rounds of R-CHOP). We'll do another cardiac workup for the Adriamyacin, and on the neuropathy side they'll watch for it and limit the offending drugs (Vincristine). Again rationale - fastest way to the transplant! PS He responded to my email in 8 minutes (so far he's been great about that).
Down side: I just got my eyebrowes and eyelashes back. I figure 22 days, and they're gone again. Not happy, but thoroughly understand the alternative.
I stood up with both Docs in the room and said look at me, I'm healthy, I look fine. Cheson responded, if we don't nail this immediately, you will not be ... very fast.
So, it's into the hospital today (as soon as they free up a bed for me). Thanks for all of your support. I am quite sure that this is not going to be fun. But we'll get through!!
All the best,
Dave
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Orig. Stage 3A, Gr 1 fNHL (10/11 W&W 6 mos). Then dx Stage 4, DLBCL w/10 & 11cm messenteric masses (Dx 5/12 w/new biopsy & PET scan). R-CHOP 4x (6/5/12) - failed. Then R-ICE 4x -failed. Now Bendamustine (also failed). 60 yrs. w/lifetime in bodybuilding.
I went out yesterday to find pajamas (you can't find mens PJs with buttoned tops - I have a Mediport). So I went to Kohls and bought some inexpensive fleece shirts to where there.
Got my will, living will, durable power of attorney, and living trust material witnessed and notarized last night. Seems like this is a great time to have those in place.
The last time I was an inpatient was 55 years ago, when I swallowed a quarter. A bit anxious about this, but really, at this point don't have much choice, so I am just kinda numb.
I emailed Cheson yesterday to look for clarification about why Part A could be used (especially in light of the fact that I have previously had 4 rounds of R-CHOP). We'll do another cardiac workup for the Adriamyacin, and on the neuropathy side they'll watch for it and limit the offending drugs (Vincristine). Again rationale - fastest way to the transplant! PS He responded to my email in 8 minutes (so far he's been great about that).
Down side: I just got my eyebrowes and eyelashes back. I figure 22 days, and they're gone again. Not happy, but thoroughly understand the alternative.
I stood up with both Docs in the room and said look at me, I'm healthy, I look fine. Cheson responded, if we don't nail this immediately, you will not be ... very fast.
So, it's into the hospital today (as soon as they free up a bed for me). Thanks for all of your support. I am quite sure that this is not going to be fun. But we'll get through!!
All the best,
Dave
_________________
Orig. Stage 3A, Gr 1 fNHL (10/11 W&W 6 mos). Then dx Stage 4, DLBCL w/10 & 11cm messenteric masses (Dx 5/12 w/new biopsy & PET scan). R-CHOP 4x (6/5/12) - failed. Then R-ICE 4x -failed. Now Bendamustine (also failed). 60 yrs. w/lifetime in bodybuilding.
FIGHT...FIGHT....FIGHT
Let us know how we can help.
Hopefully the treatment will go as easy as possible and you aren't too limited in the hospital and can do what you like to do everyday.
Very positive that your oncologist has a solid plan as to what is going to happen.
Fight this, you may have cancer but cancer doesn't have you!!!
Treatment: hyperCVAD Course A: cyclophosphamide, vincristine, doxorubicin (Adriamycin), and 40 mgs daily of dexamethasone with 12 hrs/day of Mesna. Course B consists of methotrexate, cytarabine and leucovorin (I think that there is Mesna here, too). The protocol was originally developed to treat leukemia in young, fit patients, due to its intensity, but has since begun to be used more widely, including aggressive NHL (me).
I have had lengthy conversations with Dr. Cheson about keeping an eye on the lifetime limit of Adriamycin (that was the neccessity for the cardiac echo), and on day 4 and day 11 when they start the Vincristine (neuropathy - want to keep playing music). We will make necessary adjustments, and use this whole treatment to get me to the transplant ASAP.
Got pretty wired yesterday. Doc switched the .75 mgs Clonazipam to 2 mgs Lorazapam (Atavan - was already using this for with Lunesta for my sleeping regimen, but now 2 more times/ day). I'll just cut the coffee back to 1 12 oz cup instead of 2 for the moment.
Just a quick fill in. And again, THANKS for being there.
PS Back on the Allopurinal to stave of tumor lysis (she's a big one - almost 9 cm by 14.4 cm wrapped around my colon). So far no skin itchiness (probably was the interaction between that and the Bendamustine - well documented effect).
Dave
_________________
Orig. Stage 3A, Gr 1 fNHL (10/11 W&W 6 mos). Then dx Stage 4, DLBCL w/10 & 11cm messenteric masses (Dx 5/12 w/new biopsy & PET scan). R-CHOP 4x (6/5/12) - failed. Then R-ICE 4x -failed. Now Bendamustine (failed). 60 yrs. w/lifetime in bodybuilding.
I appreciate the update. I know I am not alone in the fact that I have been thinking about you and hoping it was all going well. I'm sending you positive juju vibes. It sounds like so far, so good. I hope it continues to be that way.
I have a little experience with Methotrexate. I give myself an injection once a week of it for my muscle disease. My dose is very tiny compared to what you will use however so my experiences with it will probably be very different than yours. I can tell you Leucoverin is Folic Acid. Methotrexate strips out your Folic Acid so you have to take some to supplement. It also helps with some of the side effects. I'm sure you know the dexamethasone is similar to Prednisone so it might wire you up. I know you had problems with the CHOP because of that so I hope they prep you so you can sleep okay and not feel uneasy.
I'm so glad you have lots of visitors although I suppose you might have appreciated some down time to rest. Regardless, I have no doubt you are loved by many.
Hang in there and keep us posted.
Hang in there Dave and trust your body to reverse this condition.
If there is anything I can do to help let me know.
Jayne
I do know Methotrexate has some hang time. Hopefully you can show that guy up and you dump it quicker than 8 days!!
Hope you are feeling okay. I know you will feel much better soon when this is all behind you. Keep you eye on the goal. Visualizing it is important.