New to group-Marginal zone lymphoma

[Jackieyar]

I'm a 10 year survivor of marginal zone lymphoma. About two years ago my spleen double in size and the cluster of lymph gland above my liver showed cancer activity. The highest white count is 53 and hemoglobin is 9.

My journey included two rounds of Rituxan that failed due to severe anaphyletic allergic reaction. Revalimid was stopped due to high fevers and severe rash. Another chemo was stopped due to allergic reaction. Allopurinol caused violent reactions that I never want to repeat. High fever 103.9,rigors,vomiting,chills,temporary partial paralysis, and the worse headache I have ever had.

My question is if any one has had any of these reactions to chemo and treatments.

[Felix_2010]

I have marginal zone and currently on R-CVP - had my second round last week and now reacting to the Co Trimazole antibiotics. Flu symptoms , feeling shaky, sore throat and a skin reaction . I had the same first cycle but didn't realise it was an allergic reaction to the tablets , I thought it was the chemotherapy ! I see my GP tomorrow to change over .

Our bodies take some punishment with all of the drugs. Good luck with everything xx

[Reem-ayoub]

Hi. Sorry to hear about your reactions to treatment. My husband, during his second session of Rituxan (Mabthera), and after one hour into the infusion, had a severe chill where his body started shaking uncontrollably. They had to immediately stop the rituxan infusion, gave him another infusion of antihistamine and continued treatment. Let's hope this does not happen again. For the next session, doctor prescribes antihistamines tablets to be taken the night before. Will see how things progress. I hope they will find a way to manage your reactions so you can continue with the right treatment. All the best. Reem

[Calipewings_2016]

Hi and welcome. I have stage III Marginal Zone. I get my port placed tomorrow, Wednesday/Thursday I start Rituxan and Bendatine. Im getting nervous how I'm going to react.

[moors3029 in reply to Calipewings_2016]

Good Luck. My husband just finished 6 sessions of Rituxan and Bendamustine. The only problem was a reaction from the neulasta shots they gave him to to help his white blood count. They had to stop the shots but he didn't have any trouble with the chemo. He has mantel cell lymphoma.

[dbalthrop in reply to Calipewings_2016]

I didn't have any problems with Rituxan. I had 6 weekly and then one everyother month.

[Calipewings_2016 in reply to Calipewings_2016]

Yesterday I finished my 1st cycle. Rituxan and Bendamustine on Dec. 14 and only Bendamustine yesterday. I was given three new meds to take at home (allopurinol, acyclovir and prochlorperazine). No reaction to the meds yet only a skin reaction to the tape over my port.

[laylalulu in reply to Calipewings_2016]

So how are you feeling from your treatments? Hope your doing well

[Calipewings_2016 in reply to laylalulu]

So far; so good but I'm just starting though.

[Reem-ayoub in reply to Calipewings_2016]

Best of luck! My husband just finished his 3rd cycle of RB just minor chills beginning of Rituxan infusion. Other than that BR is very tolerable so do not worry it will all be ok.

[Sandy_Mouse in reply to Calipewings_2016]

Could you tell me what type of Lymphoma you have. I will be undergoing treatment as soon as my bone marrow sample has been biopsied. The sample was taken on December30, 2016. I was told Rituximab and Bendamustine will be my drugs. Worried. Thanks!

[Judyhoneycomb in reply to Sandy_Mouse]

i have mantle cel NHL and had R-Chop and now on Rituxin every 3 months. Got neuropathy in feet and finger tips. nausea has been under control. chills at times.. I was stage lV and am in remission after second bone marrow biopsy.. wishing you the best. was diagnosed april 2015.

[laylalulu in reply to Calipewings_2016]

How are you feeling? Haven't heard from you lately, hoping it's going well, happy new year to all fellow fighters and survivors 🎉🎉

[Carolgruber1]

I had horrible life changing headaches before I was diagnosed with marginal . Nothing helped.. my oncholigist said it was probably paraneoplastic phenomenon.. google for complete description. Headaches subsided with low dose prednisone 10mgms and first treatment of retuxin.

[Calipewings_2016]

I had awful headaches for several weeks before I started my txmts. I'm on sumatriptan now and it has been helping most days.

I broke out with hives so I'm taking prednisone.

[Hidden]

I was diagnosed with Stage 4 Non-hodgkins, extra nodal B cell. I also have had a severe reaction to chemo. On the 2nd round my jaw locked up, throat closed, severe rigours and excruciating pain in my lower back. Chemo was stopped immediately. They gave me a shot of something to alleve the back pain (I was in tears), stopped treatment. Gave me some more drugs to counteract this reaction and started chemo up again at a very slow pace. Since then, chemo is administered, but at a very slow pace. Normally should take about 2 hours, but now my chemo session takes 5. I still get a bit of a locked jaw and the pain shooting back and forth across my back, but not near as severe as the first time it happened. About 20 mins. in I feel the pain start up in my back, so I have to stand and rock back and forth to alleviate. Jaw locks slightly, but throat no longer closes.

[Judyhoneycomb in reply to Hidden]

i had the bad back pain from the Neulasta shots when i was going thru R-Chop. i was stage lV mantle cel NHL... in remission now after my last bone marrow biopsy. Diagnosed in April 2015. best of luck to you...

[Judyhoneycomb]

no, but I have neuropathy very bad in feet and fingertips... itchy scalp since hair came back. and my spleen had been enlarged but went down after R=chop... I have chronic hiccups and had those about 15 years even before being diagnosed with Mantle cel nil...

[gardenFAIRY]

About two or three days into the high dose chemo I received prior to my stem cell transplant, I too had "The worse headache I've ever seen" The doctors kept giving me stronger and stronger pain meds, but nothing would knock it out. So they finally knocked ME out with a very strong dose of morphine. I woke up a day and a half later feeling much, much better