Mantle cell lymphoma with stem cell harvesting

Hi Dave Dave B2 and welcome to the the Online Community although I am sorry to see you finding us.

So the treatment you are going through at the moment we have many on the site have been on this journey. You may well pick up some reply on this forum, but you may also want to join our dedicated Stem Cell Transplant Forum (SCT) where you will meet many folks who have been though the SCT Process.

A year off work? for some this has been the reality as the whole process can be very demanding but the results can be great. But each person will go on a different journey so no real time scale can be put on this.

I have been through two SCTs Wirth cells from my brother so have not done the harvest part but many folks over on the SCT Forum have so can give you help.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names like Thehighlander

You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This 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 lottos questions so ask away as we are around to help you as best as we can.

Hi 

I am on the same Nordic protocl and will be in the Christie  tomorrow for my 3rd session.

upto now it's been not to bad had the pick line put in 3 weeks ago that takes about 30 40 mins and is ok didn't have any problems with that.

my hair did start to fall out so just had it shaved off I figure that's the least thing to worry about. I have a appointment in October for the transplant clinic so think I will be having a stem cell transplant when the chemo is finished. 

I have needed a to have a couple of blood transfusions and did feel a lot better after I had the red blood cell transfusion. I know I have a long way to go yet but up to now it's all been manageable and the Christie hospital has been brilliant.

Thanks

Paul

Hi Dave,

I am going through the same nordic protocol. I am 58 yo and live in Canberra, Australia. I was diagnosed by accident out of a standard annual blood test from when I was a regular blood donor. I am due for my 6th cycle on 6 September and the idea is to have my semi lethal dose of chemo after a small break and get my stem cells that hopefully have been stored in liquid nitrogen... how is that for sience fiction.

I consider myself very lucky as I certainly have not suffered as other people might have. My biggest issue at the moment is my stomach. It is playing up but what can I expect with all the chome and the medication. 

Hoping to hear how you are doing and remeber we are all going through the same thing and we WILL beat this bloody thing

Cheers

Lou

Hi Paul 

I had a picc line put in before I had the first dose of cytarabine, takes a bit of getting used to doesn't it. 

My hair started falling out after the first r chop and I did the same as you and had it all shaved off. I thought that wouldn't bother me but had a bit of a wobble when it did happen.

This Monday 26th I go in for the next r chop which is my third dose. I got an appointment for 13th September to have hickman line inserted at Poole hospital and then back on Monday 16th September for second dose of cytarabine.

The consultant said something about having injections in my stomach but not sure what they are for, I need to have a look at the books they gave me.

On the whole I have not felt too bad although if I do just that little bit too much I have to rest afterwards and I have had a couple of times when I have felt light headed and breathless.

Thanks for taking the time to respond and good luck with the rest of your treatment. 

Cheers 

Dave

Hiya Lou

Wow Australia, for some reason I thought Macmillan was just in the UK 

I love that you sound so positive and confident, I need to take a leaf out of your book. I keep worrying about stuff although I don't show this to people I know. 

Not looking forward to hickman line inserted but it's got to be done hey.

Monday 26th August I go for my second maxi r chop which is just one day, then hickman line inserted 13th September and second high dose cytarabine on 16th September. Did you get the high dose cytarabine? I had 4 doses 12 hours apart so 1 dose Monday night, 1 dose Tuesday morning and evening then 1 dose Wednesday morning, each dose took 3.5 to 4 hours to go in. Is this similar to what you have?

Good  luck with the rest of your treatment and I hope your stomach improves.

Sending positive vibes your way. 

Cheers Dave

Hi 

I have been told that Mantle cell lymphoma is incurable and wondered if there are any facts or statistics about remission. 

Thanks 

Dave

Yes Dave, Macmillan is indeed a UK Institution but the Online Community is World Wide.

Hi Lou LouAus and welcome to the Online Community but always sorry to see folks finding us. I am Mike Thehighlander and I help out in our blood cancer forums.

You are well down the road and an Auto Stem Cell Transplant (SCT) is next on your to-do list. I was diagnosed with a rare T-Cell Lymphoma back in 1999.......long treatment journey but I went through two Allo SCTs with cells from my brother in 2014 and 2015 and am doing great.

We do have a dedicated Stem Cell Transplant Forum where folks support each other on this very unusual and amazing rollercoaster journey.

Why not follow the link above and join the SCT group by hitting the ‘Join the Group’ tab just under the main group name and it is worth indicating how you want to receive email notifications when someone answers your posts.

Go to the 'Start a Discussion' tab just under the main group name and set up your own Discussion and introduce yourself to the group, you will find us a very supportive group.

You can also look at the various threads in the forum by hitting the 'Discussions' tab as we have a few ling running threads giving practical advise.

You may find THIS thread good to read as we have collected peoples thoughts about preparing for and being in for your SCT.

If you know the conditioning chemo you will be having to 'take down' your immune system make sure you put that in your first post in the SCT Forum as one of us may well have had it.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

Best regards from Inverness Scotland.

Dave, just seen your post that passed my last post.

Interesting to say that in 1999 I was clearly told that I would never find remission and there was no cure for my rare type of T-Cell Lymphoma........... fast forward 17+ years when I was told on the 19 Sep 2016 that I was in remission and NED (No Evident Disease)

i am now coming up to 4 years post my second Allo SCT and the 5 year mark will be the half way point to 10 years when it would be remotely possible that I have won the battle....... but at the moment i am enjoying every day being clear of my condition.

Dave,

The internet is a lovely thing when it works. I only found out about the MacMillan while surfing. I honestly am not worry, it is out of my hands and i have no control about the outcome. My specialist, the registrars and all the amazing nurses tell me where to go and when to go and I turn up. I do trust them.

I have a picc line but haven't got a hickman's one. It was a bit to get use to but now is ok. The only issue is having showers. My wife has to wrapped my arm in cling wrap every time.

The cytarabine process seems to be the same. Here at home, they sent me home with a pump which delivers the dose exactly when it needs to so all it happens mostly overnight until I go the next day and get a new lot, so four doses. 

In one of your other posts you mention about injections. I got one 24 hours after chemo and I think it is to kick start the bone marrow to produce more cells and quicker. I was scared to learn how to do it myself but the nurses taught me and it is not a big deal. Just before stem cell harvesting, I had to inject 3 injections a day until my bloods were ok for the stem cell harvest. I had 21 injections, thank god I have a bit of fat in my tummy...

Something else you mentioned is that about a cure. I was told by my specialist that we are going for cure, he did mentioned that there is a 50% chance that it might come back in 5 years but that is too much in the future to woryy about it now. 

Keep strong

Lou

On Nordic protocol 6th Chemo blast is on 16th October then they will start with the stem cell transplant and will start injection and collecting stem cells a week latter. Up to now have had to have my line replaced due to a line infection and have a few problems with stomach but has all been manageable upto now. Will be in Christie in isolation through November not looking forward to that and, the possible side effects but hopefully will be worth it in the end and I can be out for Christmas.