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New here, B cell marginal zone lymphoma with ITP

Avantgardener's picture
Avantgardener
Posts: 31
Joined: Apr 2012

Hello all. I'm new here. I was diagnosed on 4/13/12 (Friday the 13th!) with marginal zone B cell lymphoma and its sometime companion, immune thrombocytopenic purpura - mercifully known as ITP. ITP is an autoimmune disorder that also involves the B cells and causes the immune system to destroy platelets, which makes it more complicated to treat the lymphoma.

I was in the hospital for nearly a month after being diagnosed, because my platelets were so low (18 when I went in, 29 now - low end of normal is 150). This is something I will have to live with for a while. My current treatment is Rituxan and prednisone - I can't have the standard CHOP chemo because of the ITP (long story); Rituxan can take 9 months or longer to replace the current crop of B cells with a new and hopefully healthy batch. I may eventually be able to have CHOP, but until the ITP comes under control it's not an option. It could also be that the Rituxan/prednisone will have enough good effect that I won't need CHOP at all, and of course that would be wonderful. In the meantime, I feel very well and would not know anything was wrong with me had this not been discovered by accident. Amazing what dark secrets can lurk in our bodies.

Like everyone else here, I'm in uncharted territory and trying to learn as much as I can about what I have, what the options are, and what to expect. I'm especially interested in hearing from anyone else who may have the lymphoma/ITP diagnosis or who has had good success with Rituxan/prednisone alone. I've done a LOT of reading (not much else to do when you are in the hospital for a month!), but most of it is pretty abstract, and there's no substitute for the knowledge and experience of people who have actually been down the path ahead of you.

Looking forward to getting to know everyone and to becoming part of this community.

anliperez915's picture
anliperez915
Posts: 756
Joined: Sep 2011

Hi Avantgardener,
Really sorry that you have to be here but welcome to the group!
My name is Liz and I sort of had a similar situation to your except for the month stay at the hospital. My diagnosis is Splenic Marginal Zone Lymphoma stage IV with tumors in Spleen, Liver, and bone marrow involvement. I also had a problem with my platelets but that was at least 10 yrs ago. Mine were also very low and almost had to go through a bone marrow transplant but luckily they gave me a medicine back then and that solved the problem (can't remember the name of the medicine) anywho! I was also treated with Rituxan only and I did get Prednisone but only for 5 days and that was only given to me because I had a bad reaction (rash/hives) that I got on my second week of treatment. I was treated in February of this year and in a couple of weeks I'm going to see my Onc to get all the test done again to see if the medicine worked! I feel ok but I do get pain in my back, taking it day by day! Take care and let us know how everything is going for you!

Sincerely,
Liz

allmost60's picture
allmost60
Posts: 3172
Joined: Jul 2010

Hi Avantgardener,
My Lymphoma is different than yours, but I did want to pop in and welcome you to our group. I have Follicular NHL-stage3-grade2-typeA-diagnosed in June 2010. I'm on a 2 year Rituxan maint plan and just finished my first year in February. I've done well with the Rituxan and my yearly scan(3 weeks ago) came back good...no new cancer and what tumors I still have are in a safe size range. I never had any problems with my blood counts fluctuating during or after chemo.Prednisone is no friend of mine and actually it was the hardest part of my chemo protocol for me to handle. Fatigue and sore achey joints still bother me, but not so bad that I have to take pain meds to cope with it. The prednisone however was awful for me. Hopefully you will tolerate it better than I did. I'm sure others will join in soon with helpful information. Are you out of the hospital now? You take care and know we are always here and ready to help in any way we can.
Best wishes...Sue

Avantgardener's picture
Avantgardener
Posts: 31
Joined: Apr 2012

Thank you for the replies - it's good to have the support, although this is a heck of a way to meet new people!

I am really not liking the prednisone either. Ugh. I started off at 100 mg. per day, which is quite a high does. Hot flashes and headaches, plus it made me an instant diabetic, which I've never been before. I know that's only temporary until I finally go off the drug, but in the meantime I must check my blood sugar 4 times per day and inject myself with insulin if it's over 150. It's not actually that big a deal to do that, but psychologically it's distressing to know that I'm diabetic. Now that I'm down to 20 mg. the symptoms aren't as bad, and I'm not needing the insulin very often, but I have puffy feet an ankles - another new one for me. Will be very happy to get off this stuff! Seeing the hematologist oncologist tomorrow and we'll see. I don't feel like it has done anything to help me.

In the meantime, I'm still feeling well and have lots of energy, and spending a lot of time in the garden catching up on all the chores. A lot happens this time of year and I missed everything. Tomatoes are finally in, though - yay!! - now I feel like I can maybe start getting back to some kind of normalcy. Let's hope!

jimwins's picture
jimwins
Posts: 2059
Joined: Aug 2011

Just wanted to pop in and say "welcome" - sorry you have to be
here but you'll find wonderful folks on this site.

Love your screen name too :).

Sorry you're having issues with the prednisone. I just recently had a
friend who was on a small dose of it for inflamation and he developed
diabetes as well. He's finished now and the diabetes is gone. I think
he said they called it "situational diabetes".

I don't think prednisone is anyone's friend. Main issues I had were:
not being able to sleep (slept maybe 3 hours with high dose of ambien and
atavan), mood swings, ravenous-ate like a horse, and it kind of removed
the "filter" between my brain and my mouth-LOL.

Anyway, welcome and best wishes to you.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

onlytoday's picture
onlytoday
Posts: 592
Joined: Jun 2010

Hi Gardener!

Welcome to our family - sorry you have to be here at all of course! But you will find a wealth of information here and all the support that you want! A GREAT group of people here with huge hearts.

I also have Marginal Zone Lymphoma, stage iv, diagnosed 05/2010. I was treated in September of 2010 with 4 infusions of Rituxan only. Didn't go into a true remission but it has kept me out of trouble until recently. I am stage iv simply because I have lymph node involvement in my neck, groin and have disease in my bone marrow and gastro-intestinal system. Our stage iv doesn't mean the same as other cancer stage iv's.

I do not have the platelet problem as you have. So sorry that you have had to spend so much time in the hospital!

You will find that Marginal Zone is fairly rare. However we are usually treated with similar chemos as Follicular NHL patients. Of course your ITP diagnosis makes you even more special! :) Here's hoping and praying that Rituxan knocks the Lymphoma to the curb.

Please stay with this sight. Wishing you healing and strength.

Hugs and prayers,
Donna

Avantgardener's picture
Avantgardener
Posts: 31
Joined: Apr 2012

Hi, Donna. Thanks for your post - you're the first person I've encountered who has been treated with Rituxan only. No prednisone?? I'm pretty sure that the prednisone is not doing much for me, but still on it for now. Hoping to be off it soon.

In the meantime, I'm of course Stage IV also, since it's in my bone marrow, and you're right - although that sounds like a fearsome diagnosis it doesn't mean the same thing that it means for solid tumor cancers. Almost by definition lymphoma is Stage IV, since it's in the lymphatic system. Mine is probably in my spleen as well, but so far we are leaving that alone.

Have to run - Rituxan treatment #4 is in an hour and I don't want to have to tell them I was late because I couldn't get myself off this discussion board!

A very happy day to all.
-Janine

ROF
Posts: 11
Joined: May 2012

Janine

Sorry to hear about your condition. One thing I have found out as how different the opinions of oncologists are. I was diagnosed with marginal zone lymphoma in Oct 2011. It was rare since mine was mostly in my bone marrow...biopsy showed over 90% impacted, I also had 7lymph nodes that lit up on the PET scan. My blood counts at that time were Hemo 5.1, WBC 1.9 and platelets 12. Stanford and my doctor here started me on R-CHOP imediately with the first two rounds reduced and then "full" strength after that. My counts begin to improve after the 2nd treatment and at the end by counts were near normal. Since I stopped chemo by RBC and WBC have risen or stayed the same but platelets have dropped from 142 to 102 but the docs don't seem concerned. Now I have found out that what my local oncologist thought was full strength is not what the Stanford folks call full strength so I am going back for 2 more rounds of R-CHOP. I have a really good response to the first 8 treatments and by bone marrow looked clean and only 1 lymph node had a very low SUV (2.3)on the PET scan.

allmost60's picture
allmost60
Posts: 3172
Joined: Jul 2010

Hi Janine,
I complained terribly to my Oncologist about the prednisone...begged him to drop it from my treatment, but once he explained how important the use of it is, I quit complaining and just accepted it. He said prednisone keeps our organs from swelling while receiving the combination of harsher chemicals that are added in our individual protocols. Cyclophosphomide and Vincristine were part of my Protocol along with Rituxan and pred...(CVP-R)protocol. Without the pred he said I would feel very bloated and sore with extremely worse fatigue. The pred gives us energy, keeps inflamation down and increases appetite, which is much better than the alternative if we didn't take it. He said prednisone totally made the difference in people tolerating chemo so much better than in the "old days" years ago. So...we must take the good with the bad to get to the main prize..."remission". Just thought I'd share the info my Onc gave me on Pred. It's nasty stuff, and I HATE it, but without it, I'm convinced we would be much more sickly and down during our chemo! Love...Sue
(FNHL-2-3A-6/10)

miss maggie
Posts: 929
Joined: Mar 2010

Hello Dear Sue,

I am so sorry I haven't posted to you directly. I do keep up with you and others
each day.

I only received Rituxan treatment in Dec 2009. I also received Prednisone. I don't
remember having any negative reaction. Since I have many allergies, there are
times when my internist will put me on Prednisone tablets. The depression that I
suffer from the Prednisone is unbearable. I suppose it's because I have to take
this horror for a week or 2, and gradually wean off.

I am so happy to read you are doing so well on your second year of Rituxan treatment.

My, Baby Lizzie is getting so big. What a joy you are sharing her younger years.

Hugs and love to you. Never forgotten. Love Maggie

Avantgardener's picture
Avantgardener
Posts: 31
Joined: Apr 2012

Rituxan was a little rocky yesterday - at one point I turned beet red and then had some severe abdominal pain, no idea why. Got morphine through the IV and that took care of it. First time I've had any negative reaction, and hoping it was just a "one of those things"...

BUT!! My platelets were 35 - that is awesome news and means the Rituxan is working. WBCs were 4 - that is normal! And hemoglobin 9.4. These are much better numbers than I had when I left the hospital on 4/23. I've been worried that Rituxan/prednisone by itself was not going to help me. All that time stuck in the hospital with nothing still happening...ugh.

Also, my oncologist dropped the prednisone to 10 mg starting today, we'll see if that feels better. Thanks so very much for the explanation of WHY it is important - I've been so concentrating on learning about Rituxan that I didn't pay much attention to poor old neglected prednisone. I'll treat it with more respect now.

I would still rather have the CHOP chemo and the Rituxan and just hit it as hard as possible and get it over with, but since that isn't an option for me with the ITP this is what I have to do.

A very happy day to all -
-Janine

onlytoday's picture
onlytoday
Posts: 592
Joined: Jun 2010

Janine,

I am so happy to hear the good news about your numbers! That is great!

I did have prednisone with the Rituxan as well, just forgot to write that.

I think that Rituxan is a miracle drug. When it works is does a beautiful job blowing up those B cells!

My best to you as you go forward -it sounds like this course is working out great for you! Keeping you in my prayers.

Hugs,
Donna

Toughasnails
Posts: 12
Joined: May 2012

Hello again,

I got the riggers two of the four Retuxin only treatments. It starts like a chill and I shook for 40 minutes straight it was a nightmare they finally thought to give me Valium it relaxed the muscles. I had CVP for two treatments with Retuxin it was all a cake walk on May 17 I go onto 7 cycles of CHOP I will let you know how that goes careful what you wish for. Do they give you Benadryl in your drip? You sleep and look like a mental patient but it cuts reactions down. Last time on April 26 th out of nowhere my hands would not stop itching it was a Retuxin reaction but is still is an amazing drug.

Once I learned to accept that I was actually sick because I do not get sick it made it easier to accept reactions. Also I had to learn I have no control over this including the hair loss that will occur when chop starts not bad for a guy but I got use to still having it at 48! Acceptance that it is all for my own good helps.

Keep up the good work took me 4 RETUXIN and 2 CVP treatments to get my hemoglobin up to 9.4 I started at 7.2 at discovery in January. Great work congratulations.

Best
Tough as nails

Toughasnails
Posts: 12
Joined: May 2012

Stages have a completely different meaning in this DX. Your spleen is most likely enlarged it is indicative of the disease it will go down ans you will see your Lyons will too! The lymph node on my neck left side was large it went down with my first treatment of Retuxin only! Again Retuxin is a miracle.

Toughasnails
Posts: 12
Joined: May 2012

I have b cell NHL sorry you have such a complication. Mine is all in the marrow no tumors in my body, the doctor took me in slow Rituxin only 1x per week for 4 weeks it cleared my marrow pretty well not we are going into full CHOP now. The Retuxin is a miracle drug that did not even exist 12 years ago! I hope this give you encouragement, think positive I too had an accidental discovery. Never know what is lurking in our bodies and you would be surprised haw it can heal.

Best wiishes for success.

GibbyDave
Posts: 1
Joined: May 2012

I was diagnosed with marginal zone B cell NHL in 2008. The docs did R-CVP first....no results other than Prednisone giving me a false energy. Then came R-CHOP ...no improvements with that either. In both courses of treatment, I had problems with Rituxin and had to take it slowly....infusions lasted for hours. I had success on the third course of treatment with Rituxin and Fludaribine and have had partial remission for 2 years. Fludaribine comes at the NHL from an entirely different approach than R-CVP & R-CHOP. Fludaribine is the gold standard drug for Leukemia....it just shows you how closely related the blood cancers are. The names/labels put on the various forms of NHL are just that...labels. Each individual reacts differently even though we may share the same label, technically.

Treatment is an educated guessing game, in my humble opinion.....best wishes for successful treatment to all!

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