Hello everyone,
My husband was diagnosed with stage 4 grade 1/2 follicular lymphoma in March 2024 at the age of 57.
6 rounds of RCVP reduced the lymphoma to 1%. He has been having 8 weekly injections of Ritiximub as part of maintenance therapy.
We expected his recent PET scan to have reduced the small amount of lymphoma left but it has grown since September. Has anyone had a similar experience? He is otherwise fit and active with no other previous health issues. Feeling very anxious about the what next as we hoped he would have a significant period of time free of the disease.
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Hi @Beth2002 welcome to our forum, I am so glad that you have found us.
I hope others will share their experiences with you.
I reckon that it is really normal to feel anxious.
What has your husbands medical team suggested?
If you want to find out information on possible clinical trials the Blood Cancer support line is there for you on 0808 2080 888.
Please do look after yourself as well as you obviously take care of your husband.
Be ever so kind to yourselves and I look forward to hearing more about you so please do keep posting
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Thank you Erica- feeling very anxious.
His oncologist is retiring so has referred him to a haematologist whom we will see on Wednesday 5th March.
Likely they will need to biopsy his rib as the other spots of lymphoma are too difficult to get to.
They will see whether the grade 1/2 has changed to explain why Ritiximub is not working for him.
At this stage it’s difficult to know whether it just isn’t the right treatment or if the low grade has transformed into a higher grade. Our understanding is that generally speaking Ritiximub is highly effective for lower grade lymphoma. Telling the children was very tough and not knowing how worried we should be. We know from reading that prognosis is affected by how quickly the lymphoma returns after treatment so this isn’t a good sign,
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Hope you got on ok this week. I have Non-Hodgkin lymphoma (NHL) and was first treated in 2018 so I can fully understand your anxiety and the disappointment you must be feeling. It’s completely normal to feel this way when treatment doesn’t go exactly as planned my first chemo had little impact and I had to have different regime followed by two years of rituximbab.
I can’t imagine how concerning it must be to see the lymphoma grow not shrink. It’s understandable you feel anxious and disappointed, especially when you were hoping for a more positive outlook.
It’s important to remember though that everyone’s experience with lymphoma is unique, and while RCVP and Rituximab are often very effective, sometimes the disease can behave unexpectedly.
Maybe you could ask for further imaging to get a clearer picture of the extent of the growth and explore other treatments.
There are many treatment options available for follicular lymphoma, including other forms of chemotherapy, targeted therapies, and clinical trials. Your husband’s oncologist can discuss the most appropriate options based on his individual situation.They are the best source of information and can guide you through the next steps. Please encourage your husband to ask questions and express his concerns.
Remember, you are not alone in this…
Please keep us updated on your husband’s progress. We are here to support you.
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Hi Jules,
Thank you so much for checking in.
My husband will have a biopsy on Wednesday 12th March to determine whether the FL is still grade 1-2 or has undergone transformation.
The haematologist will then formulate a treatment plan.
My husband now falls into the POD24 category as he has relapsed after 8 months.
It’s likely that he will undergo more chemo Obinutuzumub and Bendamustine. The haematologist will talk to his team to determine whether a stem cell procedure would be beneficial for him.
The POD24 OS rate is not great in terms of prognosis but our consultant said to be cautious of the statistics as often times they are based on data from studies carried out 10 years+ ago.
Very nervous about the biopsy and hoping the FL has not undergone transformation.
We are both finding this new reality very upsetting.
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Hi @Beth2002
It is such a worrying time - I get you completely.
Last year my daughter moved into her own home.
I met her lovely new neighbour whilst we were both gardening out of the front of the houses one day. I always believe in everything happens for a reason. Adele her neighbour also was diagnosed with lymphoma, can you credit that but she received a trial.
I’ve posted her story here for you because she is doing amazing.
Thinking of you.
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Thank you Jules. Your messages are so very welcome and do make a difference.
Thank you also for sharing Adele’s story which offers hope where perhaps there was very little.
If my husband’s FL has transformed from grade 1-2 I would be surprised as he’s had no symptoms- no swollen lymph nodes except one at the back of his neck, no drenching sweats, his LDH is in the middle of normal etc. in fact apart from putting on a little weight taking Ritiximub he feels good.
However we do know it’s a possibility.
Hoping for the best but preparing in case it has transformed.
Thanks again.
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