Stem cell delayed and having 2 cycles r gmox after 6 rchop

Hi again , these delays happen unfortunately. Your team need to get you in the very best position for your Auto SCT to go ahead and for it to work...... in the big picture a delay will not make a big difference to outcomes, more likely improve outcomes.

When my first Allo SCT failed I was told to go away (with some maintenance treatments) and have some R&R and we would have a second go at my Allo SCT 16 months later and this time we got a result.

Sorry to hear you are having an unfair share of side effects. Leg pain can indeed be a challenging one and yes I had these over my many years....... are you by chance having G-CSF Injections to wake up your bone marrow?....... these can often be a cause of these pains.

Lets look for things to move in a positive way and get you in for your SCT.

Always around to chat ((hugs))

Mike

You are so right about the pain side effects of G CSF. I called my wife this morning and she is saying she has woken today with a painful dull ache all down her spine. She has been given 2 doses of this over the past couple of days so they believe this to be the cause.

Hi Nick..... I think I said before that I was on the G-CSF injections once a day for 4 months following my second Stem Cell Transplant..... I told to take a few Paracetamol with breakfast then did the injections. 

I had no 'real' bone pain and I was told that this was down to my team prescribing Piriton or Clarityn Antihistamine as this bizarrely stopped the pain developing, these were taken as per the dose instructions - worth talking her team about this as not a lot of hospitals do this ((hugs)) all round 

Hi Mike super glad you're here ! Yeah getting GSF again with the R GMOX bit don't start them till day 5 this was days 1,2,3 after GMOXbit it's settled now , hitcher another infection but no need to be inpatient on co amoxickav get my pre chemo check up on Friday to see if I can get last GMOX on Monday do fingers crossed then I have to wait on all my teeth being removed devastated but I'm here ! Then PET scan to see if they got tge stubborn bit . Then re scheduled transplant I hope . I had eveey side effect named fir RGMOX o think neuropathy most Defford being the worst with the 3 day leg pains then forgetting not to touch cold stuff didn't get throat thank god but hot the suffocating feeling but managed that with hot tea 

Hope you are all well and many thanks again for the support xx

First some ((hugs))

There are unfortunately some cost to going through SCT and for some teeth and the risk of very bad infection can be a problem.

Let’s look for the bumps on the road to flatten out and for you to have a less eventful journey into SCT.

I am doing very well, coming up to 6 years post my second d Allo SCT and honestly, if it was not for coming on to the Community to help out the memories of the SCT process would be all very fuzzy ((hugs))

I was very confident going forward knew my teeth were an issue only 2 but they want all removed and gums stitched as upset as I am tgetxwere my biggest worry Mike so now I'm relieved they can't cause any problems if not present vanity is the least of my worries..... they have given me 95% mortality I'm happy with that and I must say tge transplant team have been amazing really reassuring but not sugar coating things either . Did you have to go through chemo again for 2nd stem? It's taken a heavy toll on me lost 9 Stine which was great in health terms as I was deemed not suitable due to weight by my consultant so that's been the plus side.. they didn't want me losing anymore though before stem but I've lostc7lb since chemo on 9th but I had infection so I'm sure they will be OK with that. Eating a little better last 2 days but it's still a struggle..... I will participate more often in group now especially fir advice on run up to transplant and beyond! I'm taking it one day at a tune now since tge blow that it was being re scheduled I was definitely mentally ready to do it so I'm hoping the doubts don't return.  Your a credit to the site thank you 

I've had terrible pain it's scary when you don't know what ut is .when they doudked my dise fir collection I had pain in chest base of spine and legs its definitely the cause as soon as I stopped the pain stopped I was a martyr at first but now I take one Co codamol and that definitely takes edge off 

Sorry for not getting back to you sooner but I work for my daughter on a Wednesday in her Online craft supplies business manly cutting fabric to send all over the world.

As devastating loosing your teeth it is so important to reduce the areas where problems will present.

Unknown said:

Did you have to go through chemo again for 2nd stem?

Actually no, I did have to have skin maintenance treatments over the 15 months to keep my condition under control. Then my conditioning for my second SCT had 30 radiotherapy zaps on my skin then some full on chemo.

I have talked with many folks over the years on here and on another support platform I help out on. I was helping on a SCT zoom support group a month back with about 20 folks in it and all bar one person agreed that the actual SCT process was far less challenging then they had been told it would be by their team.

((hugs))