Non Hodgkin's Lymphoma Friends

1,612 members749 posts


skinkade profile image

Hi all,

I've been dealing with low grade B cell lymphoma since 2016, treatment was Gazyva. It came back in about 6 months and I've been on w&w since my blood numbers have been okay. Symptoms started ramping up over the summer and I was going to do treatments but my blood numbers were pretty much in the normal range so we held off.

Had a PET scan and it showed some unusual signs that I may have transformed.. Got the bad news today, I have and they want to start me on R-Chop on Monday. In addition they're suggesting that I do a spinal tap to get the chemo into the brain and spine. I have fluid around my lung that has lymphoma in it.

So I've gone from watch and wait to this, I'm petrified as this was all just thrown at me today Friday, and they want me to start Monday. What advice can anyone give me to handle this turn of events.

Thanks so much!

12 Replies

Hi. I found out in January I had both a low grade and high grade nhl. It was a complete shock. I had rchop chemo and tolerated it quite well. Found out in the summer I had gone into complete remission. Just need 8 weekly injections and 4 monthly check ups. I found ginger ale helped with the sickness but uf it gets bad your consultant can prescribe stronger anti sickness. Get plenty of rest and eat what you fancy. Good luck with your treatment and getting well again.

skinkade profile image
skinkade in reply to Clarex2

Thanks so much, did you have to do the lumbar infusion as well?

Larwil profile image
Larwil in reply to Clarex2

Clarex2, it is very tough to deal with that kind of news all at once, stay positive and strong, I was diagnosed with large cell B in the spring of 2015, treatment consisted of R-CHOP and radiation, to be honest the chemo was not as bad as I had heard or thought, lost my hair but otherwise didn't get sick and did not experience much nausea at all, but I am sure everyone is different, hopefully your experience with the chemo is like mine, eat well and try to keep moving and hopefully all goes well, Larry

Clarex2 profile image
Clarex2 in reply to Larwil

Hi Larwil. Thanks. I have follicular and large diffuse b cell, areas of high grade but I have never asked how much. Can I ask have you been cured? Ive been told 2 years to be cured of the high grade. I have a check up in 4 weeks and feeling anxious even though i feel well. Any advice on staying in remission?

Larwil profile image
Larwil in reply to Clarex2

Clarex2, I did have large b cell as well, I had it localized in my lower jaw bone, I always very cautious to say I am cured, but subsequent scans, MRI, and blood work have all been good so far, hopefully it stays that way, I was told that once you get past the 2 year window without a relapse your odds continue to improve that you have been successful in beating the cancer, but as I am sure everyone will say it is never far your thoughts unfortunately, I hope this helps, anything else i can help with please don't hesitate to ask. Larry

gardenFAIRY profile image
gardenFAIRY in reply to Larwil

My first treatment was 6 rounds of RCHOP and I do did not experience any severe side effects, except for one unfortunate experience. After each treatment I would have a headache that usually lasted until the next day. The medical staff felt the headaches were caused by the anti-nausea drugs I was being given. I was never nauseous or experienced vomiting during my treatments. So, the nurses felt I didn't need the anti-nausea meds in my mix so they were deleted for the 5th treatment. BIG MISTAKE. I started vomiting in the evening and on through the night. By morning I had to go back to the infusion center to be hydrated through an IV, For the sixth and final treatment I insisted on the anti-nausea drug. I told them I'd take the headache over vomiting any time.

No just a biopsy to confirm the lymphoma. Further testing confirmed low and high grade.

My husband was diagnosed with NHL Alk+, Tcell June 2017. He had 5 rounds of CHOEP and right before what was supposed to be his last round had a seizure. Results came back as Lepotomeneges and he started new course. CHOEP he tolerated well, the 5 day inpatient Etopiside and Citeribine was rough because of infusions were slowly over 12 hours every 4 weeks.

His blood counts stayed very low and he had setbacks with infection.

His cancer relapsed because of time spent fighting the infections and no chemo, so he started Opdivo (immunotherapy) in March of this year and has done much better and last scans showed NED. We meet with stem cell transplant team this week in hopes of reaching long term remission.

I believe Keytruda is for Bcell Lymphoma, May want to ask questions, but don’t wait too long to decide because you want to get ahead of it quickly.

We will be praying for you as you walk this journey.

Hi. I was diagnosed with nodal marginal zone lymphoma in December 2017, I have been on watch and wait. I am sorry I'm not able to offer you any advice. I was wondering if you could give me advice, as I have not been feeling well and my blood has also been in the normal range. Would you share what your symptoms were that progressed to having treatment. I wish you well as you start treatment tomorrow

skinkade profile image
skinkade in reply to stillsue

I have horrible night sweats, fevers and fatigue. Same as the MZL symptoms 2 years ago.

laylalulu profile image
laylalulu in reply to stillsue

It worries me that our blood work can be in the normal ranges and we may still be not well. I have a few things bothering me but not sure if it’s enough to go see onocologist about, constant worry this disease we have 🙄

gardenFAIRY profile image
gardenFAIRY in reply to stillsue

I was diagnosed with marginal zone lymphoma in October 2018. I had no symptoms and my blood work was normal. The swollen lymph note was discovered by a routine Pet scan ( I have a Pet once a year as a follow up to my stem cell transplant that I had in 2016) The MZL was only found in one lymph node and was very small. My doctor felt that since it was localized in just one area, along with my history of DLBCL, we would try to knock it out sooner rather than later. I had 12 radiation treatments and will have a follow up Pet on 2/23/2018.

You may also like...