Hello, I was diagnosed with 3A low grade transforming to 2A high grade in April 25. I started R-CHOP in May and have responded well and have my last treatment in a couple of weeks. I will have to go onto maintenance every 8 wks from October for 2 yrs and will have a PET in November.
I’m getting really anxious knowing that the disease is likely to come back and probably transform and having to go through this treatment again. Does anyone have any tips to help me overcome this worry? I know I will be in watch & wait but worry as my diagnosis was completely out if the blue with no B symptoms. Many thanks
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Hi there, just wanted to wish you well. My husband started his last cycle of RCHOP today so we are in a similar boat. PET scan in for next month and bone marrow aspirate just after and then we’ll know fully how he has responded. The thought of relapse scares the life out of me so any tips you get, we’ll apply too. I’m determined to live with the worry best we can, be vigilant, be grateful he’s still here and most of all, to deal with what’s in front of us rather than what’s ahead. The latter is advice I got from a nurse on here and I think it’s fabulous words of wisdom. There’s plenty to worry about but a focus on the immediate, the here and now seems the only capable way.
How have you found treatment? It really is hard isn’t it. Wishing you so well
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Hard to know if it’ll transform I suppose.From my reading ‘transform’seems to mean 2 different things, 1/a switch in type for example Follicular Lymphoma becoming Diffuse large B-cell lymphoma (DLBCL),2/a large cell variant of the same type.I have mainly read about it in the context of the T Cell Lymphomas as I have one of them but I would guess that the process is similar with the B Cell ones?
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Thank you for coming back to me and the words of wisdom from the nurse; I will try to remember them. Re the side effects, I’ve managed them relatively well overall but am suffering more after my 5th cycle so will need to speak to my doctor as my meds changed a bit this time.
I hope your husband’s last cycle went to plan and that he isn’t suffering too much.
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Thanks for responding back; just to clarify I have Follicular Non Hodgkin’s stage 3A which transformed to Diffuse large B-cell lymphoma (DLBCL) stage 2A. I start maintenance in October but curious why stem cell treatment isn’t offered if they are certain it will come back as it would avoid the future uncertainty. A question maybe best asked of my consultant I guess.
Good luck with your journey.
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I thought that it was probably that as they don’t go down in number within the same cancer type; usually 1 to 4 but some like Melanoma have a stage 0.I am stage 2B of Mycosis Fungoides a rare T Cell Lymphoma.Strangely Mycosis Fungoides is split in stage 2 so 1A to 2A are the indolent early stages of the disorder and 2B to 4B the aggressive stage of it .
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I really understand how you feel. I had my RCHOP IN 2018. It’s really positive that you’ve responded well to it and are moving onto maintenance. This is an important step to help keep the disease at bay.
Here are some tips and strategies that I learnt in a work shop with Lymphoma Action ( link at the bottom) they might help you with some of your feelings of worry and anxiety as you move forward:
It’s okay to feel scared, frustrated, or anxious. These are very normal and valid reactions to what you’ve been through and the journey ahead. Allow yourself to feel these emotions rather than trying to push them away. Sometimes just acknowledging them can lessen their intensity. I know that sometimes I can go for days and not think about it but sometimes it is the only thing on my mind.
Empower Yourself with Information (Wisely)
While it’s important not to get lost in overwhelming information, understanding your situation can sometimes help reduce anxiety.
Talk to your medical team, ask your specialist nurse questions about your prognosis, what they will be monitoring during maintenance and your PET scan, and what signs (if any) you should be aware of. Knowing what to expect can give you a sense of control.
Your regular maintenance treatments are designed to proactively reduce the risk of recurrence. View them as a positive, protective measure in your treatment plan.
Focus on What You Can Control. While you can’t control the disease itself, you have control over aspects of your daily life that can significantly impact your well-being.
Techniques like deep breathing exercises, meditation, or gentle yoga can be incredibly effective in managing anxiety and bringing your focus back to the present moment. I do yoga everyday !
Blood Cancer UK offers excellent support and information that you might find beneficial:
Blood Cancer UK Support Line: If you’d prefer to speak to someone directly, their specialist nurses can offer free and confidential support.
Phone: 0808 2080 888 (Mon, Tue, Thu, Fri: 10am–4pm, Wed: 10am–1pm)
Please remember that medical advancements for lymphomas are ongoing. Take things one day at a time, and be kind to yourself through this process.
I hope some of these tips and resources help you.
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Thank you Jules for the advice and tips; much appreciated 
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