Hello I’m new here. I have just started a new regimen of treatment for Follicular Lymphoma. The first regimen R-CHOP got rid of the lump in my groin but unfortunately the lumps in my chest and neck resisted the treatment. My consultant told me this is not a good sign and he is concerned. They are communicating with Royal Marsden about the way ahead.
It seems like my situation is now quite uncertain. I will be having a biopsy early Jan and another PET scan a few days after that to see if the new treatment is working. If it’s not working my hopes rest on being accepted on a clinical trial. The problem is that unless the lymphoma has diffused (the last biopsy showed it wasn’t diffused) I’m unlikely to be able to “qualify” because there are no clinical trials for rarer conditions. I understand if I have transformed to diffused CAR T cell treatment can work well.
They tell me that my last biopsy showed 3B Follicular Lymphoma but behaving as high grade. I have dizziness, headaches at night whilst lying down, a bit of coughing, sometimes puffy eyes and face in the morning, sometimes croaky voice, tight chest.
I am determined to stay strong and positive and I’m not going down without a real fight but I am having to now accept the real possibility that I may not come through this.
The new chemo treatment is stronger and the side effects are more intense. I’m on Retuximab, dexamethasone, Gemcitabine and Cisplatin.
I have been recommended to get a second opinion from Prof Paul Fields.
If anyone has any helpful comments they would be very gratefully received.
Thank you
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Charlie120920
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Sorry you are going through a rough time. I have follicular too and finished 6 rounds or RCHOP very recently. Getting my PET scan in January, but from my 4th round I had a CAT scan and all my nodes were shrinking a lot. I don't have any experience with trials at all, but would say don't give up on that avenue From what I have heard there are a lot out there (depends on where you are mind you).
Thanks Russ for your reply. I’m so pleased for you that RCHOP seems to have worked really well for you. Was told that my midway CT scan and PET CT showed the nodes in my groin area had disappeared. The problem area is in my chest and neck. I wish they had taken a biopsy from the one in my chest as well as the one in my groin when I was first diagnosed. I think they might have found it to be different and maybe my treatment path might have been different? If it were the same as the groin in June then, knowing what has happened since , makes me angry that I was put on active monitoring because the RCHOP probably would have got rid of the lumps in chest region before they transformed to something different. I’m now potentially in a life or death situation which at 55 is very scary and upsetting.
My wife (FL Stage 4, Grade 2 FL) was diagnosed in 2011. She has received 7 FL treatments including 3 NIH Phase 1 clinical trials. Without clinical trials she would not have survived these past 9 years. Clinical trials.gov is an excellent website to search for clinical trials. Facebook has several FL groups, just search for follicular. Also each day I follow FL news at lymphobob.blogspot.com/ Note that FL Stage 4 means your FL is all over your body and in your bone marrow so it does not really matter where the biopsy was taken.
Thanks so much for this and the links. I’m so pleased that your wife has survived these past 9 years. I hope she has had a reasonable quality of life despite what she must have been through. I will definitely look at the websites and join up. All the best for the future.
I was diagnosed with follicular lymphoma on June 2019. On sept i had 4 rounds of rituximab I did alot of vitamins herbs meditation excercise and diet change. On June 2020 i was told I was on remission, the three tumors where gone. I recommend a book named radical remission by kelly turner and another one named chris beat cancer. Follicular lymphoma its supposed to be an “indolent cancer” which means it is very slow! Your mind can do wonders! Just be sure you will get well and you will get well!! I assure you. Good luck!! ❤️
Thank you so much for your reply. I am so pleased to hear your tumours have gone. I have just ordered the books you have recommended and will read them with interest. All the best.
I wish you the best and I am sure you will be okay! Cancer its a scary word and our minds close and we think chemo its the only way because that is what mostly every doctor recommends. But the good news is not the only way and actually not always the best and most convenient. I think we should definitely have an active role on our health and learn, read and mostly go with our gut! I also want to encourage you to hear dr dispenza on spotify or youtube, the mind is the most important thing here! Best of luck
Thank you I will look up Dr Dispenza. I have heard this week that the first round of the ne Chemo Regimen has stabilised the tumours in my chest and neck which they take as good news. They also sent the last biopsy to the Marsden who confirmed that there is some high grade Lymphoma as well as Follicular 3B. This means that I can be referred to Marsden for CAR-T cell treatment which is what I was hoping could happen. So my treatment options have just just wider. A much needed piece of good news to focus my mind on.
Charlie wishing you healing and answers I had RChop in 2015. One of the chemicals caused neuropathy in my feet. I started walking like I had clown feet on and lifting my legs will high to step. Doctor removed the chemical that was causing it. But it stayed with me up to now. So just beware. Rchop brought me to remission for mantle cel started in throat. I'm 80 now and its back in throat. Doing a different chemo. FROG Forever Rely on God....
Hello Judy thank you for taking the time to message me. I’m sorry to hear the cancer is back in your throat and hope that new chemo will send it back into remission. Also sorry to hear about the neuropathy. I have peripheral neuropathy with this current regime that I’m on. I hadn’t appreciated it was even possible for a doctor to remove from the chemo a particular chemical that is causing a particular side effect! Your reply has been so helpful thank you. I wish you all the very best in your battle to beat this awful disease.
A historical reply, others like me may be reading the archives here. // I, too, did RCHOP back in 2016. I already had significant bipedal neuropathy long before the cancer got to me. My oncologist specifically dropped the Vincristine from that mix because he didn't want to chance making my neuropathy any worse. For me, it worked. I had large cell B and follicular and both were successfully treated. Of course, he cautions that the former is cured, but we should never use that word for follicular. All has been quiet since. Of course the link between lymphoma and skin cancers is alive and active. The dermatologist is earning his keep with his Nitrogen freeze gun and an occasional Mohs surgery. All my doctors keep checking, even my dentist.
Thank you Charlie and we pray for all cancer victims. I will have 2 chemicals this time once a month two days, and blood work in between. Yes they can remove a chemical if they know of certain side effects. However, mine was too late and I still have the neuropathy. Wishing you the best... Judy
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