Follicular non Hodgkin's lymphoma

[Ozzadiah]

Hi , was diagnosed end of may 2017 after finding enlarged lymph glands in groin, armpits and front of neck , had biopsy and scans done to confirm diagnosis, started rcvp chemotherapy, half way through my treatment now, severe fatigue due to not sleeping , also have osteoarthritis and the pain in my joints seems to have got worse since I started treatment, all joints constantly painful, get out of breath doing the simplest of things, but keep pushing myself to do things and started having horrific drenching night sweats , I know they are part of the condition but only started having them couple weeks ago, had a lot going on and just wondered if anyone else had noticed these symptoms ,seeing my haematologist tomorrow, see what he suggests

[Esther66]

I have the same problem, my lymph nodes are big everywhere, Grimm, neck armpits and chest but had no chemotherapy yet, still wait and watch, I now have ITP so keeping an eye on that as well, my night sweats are horrible and the pains in my legs keep me a wake,

[Sherry-welsh in reply to Esther66]

What is itp

[Esther66 in reply to Sherry-welsh]

Thrombocytopenia it’s to do with your platelets, mine are being destroyed causing them to drop I’m at 74 if they drop to 50 they will remove my spleen they should be around 180 I think.

[Shar0n Volunteer]

Hi Ozzadiah, Sorry to hear you are having a miserable time of it at the moment. This is definitely not the time to be pushing yourself hard. The reason you are having the treatment is to reduce the size or number of the affected lymph nodes.

This is a time to go easy on yourself because treatment can be quite punishing on the healthy parts of the body as well as the sick parts. I would say that sleep is so important that you need to grab it whenever you can. If sleeping through the night is not possible due to sweats, could you grab a nap in an armchair during the day or just whenever you are able?

Eat the most nourishing food you can think of that you can tolerate,even in small amounts. Sit and breathe ( outdoors if possible) instead of rushing into doing too much. You need to support your immune system to help the drugs do their work.

Hopefully the treatment will be successful and then you can start the job of rebuilding your health with more activity and a good eating plan.

Good luck with the treatment and let us know how you are getting on. Many members here have been through chemo and may have tips to help with side effects , so post a question whenever you need to .

[Mitzie]

Hi,

Sorry to hear you are suffering. I was diagnosed 2012 and had the chemo and antibody treatment which put me in remission.

I found the only way to get through it was to only do anything when I actually had the energy to do it , however small the task! Otherwise Basically I didn't to anything except sleep, read or watch tV..and tried not to feel guilty! I generally had treatment at the same time as 2 other ladies and we had good old moan together and swopped stories..it helped to find others felt the same as you. We still meet up for coffee and cake..what could be better!

Just hang in there!

Best wishes

[Ozzadiah]

Thank you for your support and understanding, just seen my hematologist and he confirmed the enlarged nodes had shrunk which is all good news , 3 more cycles of chemo then maintenance therapy , breathlessness is apparently due to the chemo, just feel so guilty asking for help, have always been a very strong independent woman and find it hard to ask for help, luckily I have an amazing partner who just knows what to do and what to say , seems to take it all in his stride , so grateful I have him , best wishes to all who replied and thank you

[Judyhoneycomb]

So glad to hear the nodes are going down. It's so hard to accept help and so humbling. but we need to accept and everyone that offers is glad to help. I am in treatment for Non H L mantel cel and in remission. I am still tired and have neuropathy from R Chop treatment. Had Rituxin every 3 months and finished after 2 years and 3 months this past July 2017 ... May every day be brighter and your symptoms be relieved. Glad your partner is there beside you...

[Ozzadiah in reply to Judyhoneycomb]

Thank u so much for your kind words , so sorry to hear you are still suffering, I guess its just one of those things that we have to put up with, thought it may of got easier after the chemo finished and maintenance therapy started, I wish u all the very best and hope you feel better soon

[wmay13241]

My advice is to always be researching your next treatment - here's why. In November 2011, at the age of 65, my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. She is one of the 20% of follicular lymphoma patients who progress rapidly after treatments. In 3 years she progressed after R-CHOP (6 cycles), bendamustine/rituximab (6 cycles), and Ibrutinib (12 months). Then she took Idelalisib/rituximab as her fourth treatment. It worked great for 14 months then a PET scan showed she progressed again. She is now in an NIH CAR-T trial NCT02659943 was infused on March 2, 2016. Her only side effect is low immunoglobulins that require an IVIG infusion every 4 months. As of October 10, 2017, she has been in complete remission for 19 months. Current CAR-T clinical trial data shows that once a follicular lymphoma patient achieves a complete remission they stay in complete remission. There is more information on CAR-T for fNHL patients and people considering CAR-T at fnhlben.wordpress.com/

[R16728 in reply to wmay13241]

Yours is good advice and an uplifting story. My own case differs slightly since I've never had swollen nodes or bone marrow involvement. I began treatment in 2008, had 5 years of remission and then back at it with idelalisib for two years. I began to have worrisome side effects from the long term use of idelalisib i.e. hypothermic shivering, rash, fatigue, loose stools I'm off the drugs now 10 days and on watch and wait. My WBC has gone up to 30 but most other numbers are holding their own.

One thing I've learned about this disease that never changes is how it can ebb and flow. Years can pass with good health and then along it comes again. Live in the moment, eat well, covet the best sleep possible, and exercise regularly.

Thanks for the tip re. the CAR-T. It might be the next thing I'm offered.

[1Anj1 in reply to wmay13241]

The more you look at CAR-T the more you think that it should be the first line of attack. However in the U.K it's not available even in trial form.

Novartis have started to offer it after getting FDA approval in the US.

It's a couple of hundred thousand dollars per dose.

Most people cannot afford that)

[kathandia]

i was diagnosed in 2011 had FL stage 3 grade 2,3 and took bendmustine and rituxan 4 treatments and did maintenance for 2 years. i too suffer feom severe joint and muscle pain but after Chemo they also in 2013 diagnosed me with Lupus and RA. I think it is likely the drugs and this is one of those things that you are left as a side effect. i never had any pain and I now leave in pain but you also learn to live with pain some days are better than others doctors will tell you pain is unrelated but it is mentioned a lot on forums. Hope you feel better soon!! it gets better

[Esther66 in reply to kathandia]

What is Lupus and RA ? Are you still on wait and watch? Hope it gets better for you.

[Ozzadiah in reply to kathandia]

Thank you for your reply, I already have osteoarthritis, which seems to of gotten worse but don't usually have pain in all joints at once, told by my Dr its related to the chemo treatment , so for now guess I just have to grin and bear it

[Ozzadiah]

Have just had my last cycle of chemo , got my scan in the new year then see my consultant before starting maintenance treatment . Still really tired and lethargic , unable to sleep due to pain in my joints which I am told is due to the chemo although I do suffer from osteoarthritis, so not sure whether this will clear up now my chemo has finished .

All in all tho I'm fairing pretty well and thankful to still be here , would like to wish everyone on here a very merry Christmas and best wishes for the coming year , health and happiness to all

[BelindaTupper]

I'm responding a bit late, so hope your app to with you Hematologist went well. I had chemo for non-Hodgkins Lymphoma in 2015. The fatigue, muscle week Ness, and brain fog were overwhelming to say the least. I had no muscle or joint pain during chemo, but have lots of that going on now. My experience is that everyone seems to experience symptoms differently for no rhyme or reason to it. Do what brings you a sense of peace and satisfaction. Some people tackle their cancer journey like a gladiator, others with the grace of a lamb. You get to choose what's right for you. Stay focused on wellness. Taje good care.

[Ozzadiah]

Thank you for your kind words , don't see my consultant till 16th January , have my scan couple weeks before, so fingers crossed all OK and can start maintenance treatment, wishing you health and happiness and all the very best for Christmas and the new year