Stem cell transplants for blood cancers

A group for people to discuss stem cell transplants for blood cancers such as leukaemia and lymphoma. This can include transplants using a person’s own stem cells or stem cells from someone else (a donor).

Mantle cell lymphoma and stem cell harvesting, anyone else?

Dave Biff
Posted by

Hello

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

Dave

Hiya 
My name is Dave, I have mantle cell lymphoma. 
I have started treatment which is Nordic protocol so maxi r chop and cytarabine chemotherapy, 6 lots which is alternated, first was r chop on 12th July and cytarabine 5th August. 
Also having BEAM chemotherapy and stem cell harvesting /transplant. 
My chemotherapy is due to finish middle of November so I get the feeling that I will be in hospital over Christmas for stem cell treatment. 

Ho hum

Cheers 
Dave 
greg777
Posted by

Hi Dave,

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.

Greg

johnr
Posted by

Just popping in to say Hi and see you are posting in both groups, will keep an eye out for your posts, 

John 

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Thehighlander
Posted by

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

Dave Biff
Posted by

Thanks for the info, think I'm getting beam chemotherapy 

Hiya 
My name is Dave, I have mantle cell lymphoma. 
I have started treatment which is Nordic protocol so maxi r chop and cytarabine chemotherapy, 6 lots which is alternated, first was r chop on 12th July and cytarabine 5th August. 
Also having BEAM chemotherapy and stem cell harvesting /transplant. 
My chemotherapy is due to finish middle of November so I get the feeling that I will be in hospital over Christmas for stem cell treatment. 

Ho hum

Cheers 
Dave 
Dave Biff
Posted by

Thanks Greg,  phew  going to dig in and do my best. 

Hiya 
My name is Dave, I have mantle cell lymphoma. 
I have started treatment which is Nordic protocol so maxi r chop and cytarabine chemotherapy, 6 lots which is alternated, first was r chop on 12th July and cytarabine 5th August. 
Also having BEAM chemotherapy and stem cell harvesting /transplant. 
My chemotherapy is due to finish middle of November so I get the feeling that I will be in hospital over Christmas for stem cell treatment. 

Ho hum

Cheers 
Dave 
Dave Biff
Posted by

Thanks for the info, think I'm getting beam chemotherapy 

Hiya 
My name is Dave, I have mantle cell lymphoma. 
I have started treatment which is Nordic protocol so maxi r chop and cytarabine chemotherapy, 6 lots which is alternated, first was r chop on 12th July and cytarabine 5th August. 
Also having BEAM chemotherapy and stem cell harvesting /transplant. 
My chemotherapy is due to finish middle of November so I get the feeling that I will be in hospital over Christmas for stem cell treatment. 

Ho hum

Cheers 
Dave 
Thehighlander
Posted by

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 MelphalanDuring 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.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela