High dose stem cell transplant

Hi Mcdcel

I don't have the experience you're looking for but noticed you hadn't had any replies yet. Replying to you will 'bump' your post back to the top of the discussion list where hopefully it'll be seen by someone who can help.

While you're waiting for replies it would be great if you could pop something about your diagnosis and treatment into your profile as it really helps others when answering or looking for someone with a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi there, I don't but I have had pretty much all the other chemo/radio you can have so if it comes back again I will be having this I would imagine.

Fingers crossed it isn't needed as my consultant said it's pretty hard going.

Yeah I heard it can be tough going. I’m due to start mine 20th September at royal marsden. Had 4 cycles of BEP last year, markers fell to 7 then started to rise again after Christmas so I done 4 cycles of TIP & markers fell to within normal range went down to 3. My pet scan showed no activity so thought there was light at end of tunnel for a few months there all looked good then I got word 4 weeks ago my markers have started to rise again so high dose next option. Seems to be a lot more common in USA with a lot of positive results so hopefully this sorts it finally.

That sounds good, do you have links to where it has the US research?

I also had BEP followed by TIP a few months later as the BEP didn't do the job. When did you have your TIP? I finished mine end of June last year.  I also had 18 sessions of radio after the TIP.

I had TIP in January this year, finished in March, pet scan in may showed no activity. Then the bloods have started to misbehave again this month although the scans haven’t got any worse from when pet scan showed no activity. Complicating & a head f*** but hopefully this high dose just cleans everything up & I get peace for a few years 

Hi, 

Can I ask how you found the TIP chemo compared to BEP,  I completed CBOP BEP  in November , then surgery but there appears to be a small amount of cancer cells still active so I'm doing TIP in April, doc said he may consider radiotherapy post TIP depending  on outcome. 

I have neuropathy  after the BEP, did you get any neuropathy after TIP

Thanks 

Hi, the TIP chemo is a lot more intense than BEP. By this I mean you’re basically hooked up most of the day for 6 days while in hospital. If you start on the Monday you’ll be there until the Saturday evening & changing chemo/hydration bags in middle of night is needed too. BEP the chemo & hydration bags finished in evening until the next morning with nothing at night which was ok. Yeah I got neuropathy after TIP on hands & feet & also affected my hearing too. I never got sick with any chemo so I was ok that way. You’ll be fine & I wish you best of luck 

Hi Thanks for the quick reply,  yeah  I thought the TIP would be a bit busier than BEP,  at least I wont have outpatient  bleomicen infusions on the 2 rest weeks.

Thanks

Hi there. The TIP is more hard going in terms of the treatment programme, and more tough mentally. However I found the BEP made me feel more physically sick/rotten.

Had neuropathy (mild-moderate) for close to a year following treatment, although it wasn't consistent. I found I had really sensitive skin too, my legs would itch like crazy after a shower.

Happy to say I am 18 months post treatment with no effects any more and back playing 90 minutes of football every week at a decent standard, feeling as fit as I have in a long time. So keep strong and you will get out the other side!

Hi - just been reading your thread from 7 months ago and was wondering how you are after your high dose chemo? 
My husband’s consultant has mentioned the possibility of him needing this if the TIP chemo doesn’t work effectively.

Thanks Sarah