Hi, I have recently been diagnosed with Follicular Lymphoma which has come as a shock and following various scans I am about to start R-CVP six cycles of 21day treatment. Although I have been given lots of information to read on this feel anxious about what to expect as there appears to be lots of side affects. Looking for advice from anyone who has had this treatment or is currently going through this.
Hi @Chris3 welcome to our forum and I am so glad that you have found us.
It sounds as if you were not expecting this diagnosis so I expect that you are in shock and what I have found is that there is quite an emotional impact as well as entering this new medical world that speaks a different medical language.
It sounds as if you have been given a lot of information, which is a lot to take in.
I find leaflets now give so many side effects like diarrhea and constipation, weight gain and weight loss etc. They put everything to cover themselves.
However I am not medically trained and there might well be side effects.
I hope someone will be able to share their experiences and I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses
You are now part of our forum family so please keep posting how you are.
Look after and be kind to yourself
Hi @Chris3, a very warm welcome to our forum community. Thank you for sharing how you’re feeling- it’s so normal to be feeling shocked and anxious and you’re not alone. Our Support Team are here for you if you’d find it helpful to talk things through before you start your treatment? You can call us on 0808 2080 888 and we’d be happy to support you however we can. Our website has information about follicular lymphoma and treatments if that’s useful, but I appreciate you say you’ve been given lots to read.
I’m sure others on here can share their personal experiences. Do you also have a Clinical Nurse Specialist (CNS) contact that you might be able to call and share your concerns with? Perhaps they can offer you some support with this, too?
Take good care of yourself.
Thank you for your reply . I have a Clinical Nurse Specialist who has been amazing. My daughter is a pharmacist and has attended all my appointments and has been great at explaining all the drugs and treatment so have lots of support. I was just wondering if anyone had gone through the same Chemotherapy and what their experience or advice would be. I will be having rituximab, cyclophosphamide, vincristine and prednisolone .
Hi @Chris3 and welcome to the forum. I’m glad you found us so early in your journey - the forum really does make a huge difference. I to have follicular lymphoma but only required radiotherapy. I hope others can share their experiences with you. I can imagine all the questions and anxieties you have - all so natural
Please keep us posted on how you are doing
Hi @Nichola75 ,
Thank you for your reply I hope you are keeping well now. I will keep in touch through my journey . Thanks for your support.
Hi Chris3, I was treated with R-CVP in 2018 and now I’ve come out the other side I can honestly say that I feel fitter and in better health than I have for at least ten years.
We all react differently to these powerful drugs, but overall I found the treatment to be tolerable. I too was on a 21 day cycle and I stayed at home during the first 2 weeks. By the third week I was usually feeling well enough to go out for walks and to do some light gardening. I kept away from crowded places however as I wanted to avoid catching colds and flu etc.
I had relatively few symptoms. For the first two or three months I was always cold and hungry and I had a strong hangover like feeling when I came off the steroids at the end of week 1 in each cycle. I also had some mild tingling sensation in my feet but this went after the treatment ended.
By the later cycles I was feeling better and I got a sense that the treatment was working. This was later confirmed by blood tests and follow up scans.
So although the treatment wasn’t the most fun I’ve ever had I got through it pretty well and without the horrendous side effects that you read about.
Good luck with your treatment and I hope all goes well.
Great @Frankdb thanks so much for sharing your experiences of your treatment regime, that’s what our forum is all about.
It is good news that you are feeling fitter and in better health than you have for at least ten years now.
Look after yourself and please keep posting.
Thank you so much for sharing your experience this is just what I needed to hear as start my treatment on Tuesday. Yeah I plan on shielding as much as possible but was great to hear you started to feel better towards the end of your treatment.
So glad to hear you are keeping well and appreciate you sharing your experience. Take care.
I had OCVP obintuzumab instead of rituximab. I had my treatments on a Friday and was back at work Monday morning after each session. I was sick during the very first infusion but it turned out they had forgotten to give me an extra anti sickness injection (I’d had chemo before which is why i knew about the extra anti sick drug). I’ll be having my last maintenance obinutuzumab next week. It’s been a long 2 years!
Everyone reacts differently to this chemo. Hopefully youll be fine.
Thank you for your reply you have had a long road 2years. Encouraging you felt well enough to work between your treatments.
Had my first treatment on Tuesday on steroids until Saturday but I have been feeling good, much better than I had anticipated. Taking one day at a time.
Thanks for sharing your experience.
Good luck next week hope you keep well. Chris3