Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
I have mantle cell lymphoma and have started with my treatment which is R chop and cytarabine chemotherapy and stem cell harvesting , r chop first which I have had the first one and cytarabine next. They are going to alternate them and I get 6 lots. I have been told I will need a year off work.
I was wondering if anyone else has had this treatment and if so how did it go for you?
Thanks in anticipation
Welcome to this corner of the forum although I am very sorry for the reason you had to post.
I was treated for a different blood cancer (myeloma), but I have some experience with stem cell transplants (I’ve had an auto (using my own cells) and an allo (using a donor’s cells)). I am assuming from your post that you are having an auto? The way I describe it to others is “tough but doable”. It is a major procedure so it’s worth getting yourself prepared for it in that mindset, but the medical teams are getting better at them all the time, and they know what they’re doing such that you’ll get the best possible care. In terms of time off work, I had just under 4 months off for my auto - a few weeks pre-transplant as you’re doing the preparation, and about 3 months after. Everyone is different, but it’s good to plan for the first 100 days post-transplant being the toughest as you build up the lost strength and as your new immune system takes hold. In terms of the induction treatment leading up to SCT, I actually continued to work all the way through, although flexibly. I think I was quite lucky though and some induction treatments can be harsher than others, so it might be best for someone who is doing your regime to give you some insight on that.
I hope the above is helpful and I wish you all the very best as treatment begins, and please stick around here to keep us posted as to how you’re getting on and if there’s other things on your mind, there’s a lot of good experience here.
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Just popping in to say Hi and see you are posting in both groups, will keep an eye out for your posts,
Hi again Dave, good to see you have found this corner of the Community.
R-CHOP and Cytarabine is used to get your condition into remission then to do the Stem Cells harvest.
Most folks going through this treatment tolerate it well. You may find the Fatigue will build up over the cycles but keep some simple exercise going as this does help a lot.
The main issue you can face is catching Infections as your immune system will not be functioning well after each treatment so you do need to watch out for uncontrollable environment like crowds, I was told that supermarkets, pubs and restaurants were some of the worst places to pick up bugs!
If you have children or grandchildren it my be worth telling the school so that you and the family are told about any sickness that is going round the school, especially things like chickenpox as you will find it hard to fight stuff like this.
There is a need to watch what you are Eating as done food carry bacteria that your body may not be able to fight.
It is also very important to drink lots of water during and after your treatments as this helps flush all the chemo toxins from your body protecting you kidneys.
It depends on what type of job you do with regards to time off work. I had retired from teaching a few years before my condition kicked off and I could not have worked through my treatment but others do - this you will have to take it as it comes but your wellbeing and the end goal is important
The Stem Cell Transplant process will be harder as the chemo used to kill off your immune system and Bonemarrow can be very strong. Remember and ask what chemo they are using as we can help you with our own experience.
The first 100 days post SCT is important as the all new immune system is growing so plan to be out of action during this time.
I was self employed during my treatment and could not work so no money was coming in but Macmillan helped me work through the Financial stuff.
You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
You will have questions so please ask them as we are around to help as best as we can.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Thanks for the info, think I'm getting beam chemotherapy
Thanks Greg, phew going to dig in and do my best.
Hi Dave, what hospital are you getting treated at as we may have folks who have been there.
BEAM can be a big hit but its not for long. I had a different conditioning but did have the M in BEAM and that is Melphalan.
Have a look at this thread about having Melphalan. During the M you may have to do the ice pole sucking thing. I asked to start 30 mins before, through the 30 mins IV and 30 mins after to stop your mouth turning into one big ulcer!!!!
Some SCT Units don’t do this but on the whole Rhodes who do this have much less problems with Mycosis,
You do need to use all the mouth wash you are given to the letter as you will be open to bad mycosis. I was given a two pack oral rinse called Caphosol but not all SCT units use it as it is rather expensive.
Also have a look at this threadChecklist for SCT Unit where we have collected some folks thoughts about surviving in the SCT Unit.
Sorry to hear you have to go through all of this. I have just been through 6 rounds of Cytarabine and Rituximab, followed by BEAM and auto SCT, which was from Aug 2018 to Feb 2019. Then recovery time. And I'm now back on phased return to work still about 50% work 8 months after SCT.
I've written quite a bit on 2 forums, the Stem Cell Transplant forum, and the Mantle Cell Lymphoma forum, as well as on my profile. I think you can search for my id "Kelme".
Everyone goes through it differently. I would say it was pretty difficult, but I'm now kinda back to myself, and have had a few holidays. So I wish you all the best.
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