I’ve recently been diagnosed and am due to start RCHOP/RDHAP and am very nervous about how this will make me feel. I’m still very much trying to come to terms with it, but would really love to hear from anyone on the same journey
I'm sorry to hear that you've recently been diagnosed with Mantle Cell Lymphoma. It's understandable that you're feeling nervous ahead of starting treatment.
We have some information about RCHOP and about RDHAP on our website, which may be helpful. You can find previous posts where these treatments have been mentioned by using the forum search function at the top of the page. There is also some further information available about living with lymphoma that may be of interest to you.
Hopeully some members who have experience with these treatments or this diagnosis will pop along to share their experiences with you but if you think it may help to talk things through with one of our nurses, you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. I know they will be happy to listen and offer any advice, information and support they can.
I hope that things go smoothly for you Joolesdb. Keep in touch when you're able to and let us know how you get on.
I was diagnosed with MCL in February and have just completed RCHOP/RDHAOx (as RDHAP but with Oxaliplatin in place of Cisplatin).
2 days ago I had stem cells harvested in preparation for an autologous stem cell transplant.
I found the RCHOP didn't give me too many problems, aside from fatigue and hair loss, although I did react to the Rituximab so had to have slow infusions.
The RDHAOx was much tougher, partly due to having to stay in hospital and the disturbed nights that brings. I also picked up a chest infection during the first stay. I've managed to avoid catching anything other than that, but only by staying away from people as much as possible.
I've found the fatigue has built up with each cycle. After the first one, I was out strolling 2 days after, but it took me more than a week before I felt strong enough after the later ones. It is important to remember to rest, and not to overdo things. I would feel like I had lots of energy, but after a walk, or cleaning the shower, I would realise that I can only manage small amounts of exertion each day.
Thank you so much for replying. I think there’s a lot to take on board, I previously had Non Hodgkins Lymphoma 14 years ago, but I believe the chemo I had was reasonably ok apart from also hsving a bit of a reaction to Rituxamsb but I know this is a bit more aggressive and has to be treated so. Can I ask how long you were in hospital for the DHHAOX? I am worried about how it will affect me, I’m a single mum and I’m going to try to work (from home) on the days I can to try and extend my sick pay if I am able !! Can I ask how many cycles of chemo you had? Have they given you an idea of how long before you have hour stem cell transplant? I’m sorry I’m asking so many questions, when I was diagnosed I think I was too shocked to take it all in! Once again thank you for taking the time to reply, it means a lot x
I had 3 x RCHOP followed by 3 x RDHAOx (I'm aware that most hospitals alternate them).
I was told I'd be in hospital for 2, possibly 3 nights for the RDHAOx but I was actually in for 5 nights each time. The 1st was due to having been booked in for a Hickman line insertion at the same time. The 2nd and 3rd times I had a probable reaction to the Cytarabine (high temperature/aches/chills) so had to stay in for 48 hours monitoring in case it was an infection.
I've also had to have blood and platelet transfusions several times since the 2nd RDHAOx cycle. I've not had to stay in for these, but I have had to go to the hospital with an hour's notice.
I've not been given a date for the transplant yet as I'm waiting for appointments for scans, etc to ensure I'm fit enough. I've been told 4-6 weeks time but it will also depend on room availability at the hospital. The stay will be 3-4 weeks.
I'm in a different position to you as I have adult children who don't live at home, and my husband has been working from home and is able to accompany me to appointments. Do you have support close by in case you need it at short notice?
