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...
Is it normal to feel so scared after you’ve been through the risks /side effects.
19 year old daughter due ASCT soon.
worried as her lung function is a little below average due to damage from Lymphoma.
any positive stories out there?!
Hi Ruth RuthP7and a warm (although its white outside my house) welcome to our little corner of the Online Community, although I am sorry to see you finding us and so sorry to hear tht your daughter is on the Stem Cell Transplant Magical Mystery Tour.
Magical - As it is amazing what the end results can be.
Mystery - Well I still can't understand totally how it works, but it did.
Tour - Well you have to expect the unexpected ........ as the rollecestor does at times take some twists and turns.
Lung function? I have lived with Asbestosis for a good number of years and this was very closely looked at, but they were happy to see it as an acceptable risk that should not stop me boing forward with treatment.
I had two Allo SCT with cells from my big brother, first SCT did not work.....its a long story but the plan had always been two Allo's but looking for the first one to work as the Conditioning being used would be less work.
Second worked and I heard the word Remission back in September 2016 from a rare type of NHL that back in 1999 was told I would never see remission from - happy days.
Where is your daughter in the process?
Have they harvested her cells yet?
Has she a date for transplant?
Has she been told what Conditioning her team will use to kill off her immune system to get her ready for her cells going back?
Where (Hospital) is she being treated?
Lots of question, but with this information we can help more.
You may find this thread a good read as its where we collected our thoughts about what we did that helped us during our time in the SCT unit - klick on this link - Checklist for SCT Unit
An Auto tends to have much less issues as her body will not see her cells to be nothing that needs to be attacked unlike an Allo when they see the donor cells as an attack on the body.
I see you put some stuff in your profile - well done and you can hit any off our forum names to see our stories.
Yes, this may be hard work but it is do-able with great results.
Keep posting as we can walk this with you ((hugs))
Edit: You asked about positive stories - click on this LINK
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
i think you responded to my post on FB yesterday. And helped by providing link; thanks!
daughter has had harvesting 2 weeks ago. They did it in 2 1/2 hours and got 12. They were aiming for 2-4 but they got 6. Assuming millions?
Shes having BEAM conditioning chemo. We will be getting treated in Liverpool Royal.
they are hoping to do it end of November. I have 3 other daughters and I’m on my own with them. Not sure if I’ll be allowed to stay with my daughter just don’t know so I may have to travel 3 hour round trip every day.
Found out about the below average lung function yesterday when went through all the side effects/risks. I’m scared because when she went though egg harvesting in February before any chemo we had big scare. They couldn’t get her to breathe on her own and had to intubate her. They tried three times before they got her to breathe in her own. Consultant anaesthetist said it could be cos that’s where the Lymphoma is in her chest area. The lymphoma consultant didn’t seem too worried about it all and said when he knew what drugs they’d used to anaesthetise her then he wasn’t surprised this had happened as it slows down your breathing. The day that happened was the scariest day of my life and ashamed to say I was a Wreck on the floor. Just so scared that everything she goes through never seems as straight forward as others.
sorry to go on.. x
Sorry was meant to say they got 12 (million) not 6 x
Hi again Ruth RuthP7
You can go on as long as you want - this is what the Community is here for.
Yes, there are going to be some scary moments - so hold on to seeing this as aiming for the greater good.
12 million - well done her...... I had no ide back at the start so promised my brother I would give him a £1 for every cell he gave me........ I am still paying back the £11million lol.
BEAM is one of the standards condition used and is very effective. I had a rather diffrent type but did have the final 30 mins hit of BEAM that being Melphalan. Melphalan is very strong but does the job, it would be worth looking at THIS other thread about M as it can save a lot of issues further down the line.
Questions like 'can you stay with her?' you will see from my journey we are in Inverness but my unit was in Glasgow (9 hrs round trip!!!) so we had to say down in Glasgow for all the time. Over my two Allo's we were away from home 11 weeks over 2 years......... long story.
The SCT unit I was in actually had a few rooms next to the ward and my wife stayed free of charge.
When a consultant says they are not concerned then we were happy..... they are the experts.
The medical side of things you can not control - but the battle between the ears is the one you will have to take control in.
Away to paint the kitchen so will be off line for a little - but keep your questions coming as I am sure that some of the others will pick up on your post.
if it’s any comfort our daughter was seldom alone when she had either SCT, for the auto I stayed all day, then her housemate stayed overnight in a comfy recliner chair that the staff found for her. For her allo I was there again almost every day (her housemate and our son insisted I had one day off; which actually fitted in with a workman replacing an outside door in her house anyway!) during the month she was in, but by then she was a good bit better at being alone during the early hours (a musician whose fellows were late people too, the ward often had to firmly suggest they went home!)
I gathered that provided your hands were cleaned with hibiscrub and you wear a plastic apron (and don’t hug or kiss the patient!) then most units are ok provided you yourself are well. No coughs or colds or any suspicion of one allowed on the ward.
Sorry to jump in. Isn't it a frightening time. Our son nicholas who is 25 is having his transplant 12 December our daughter is the donor.
I guess we are in a world that is totally alien to us. Never thought his little trip to A & E on 23rd August would end up in a ALL diagnosis.
He has spent last 2 night in hospital with high temperature and infection. It's like being on a rollercoaster. We have forgotten what normal is now and it's that we crave for as a family.
Hi Hayley, good to see you have found yourself over to our little corner.
The good thing is Stem Cell Transplant teams are at the top of their game and the process has been done for a very long time (1957) and with the passing of time the success rates are getting higher higher by the year as knowledge brings success.
Normal?...... over the years, at times, it's been lick living in parallel universe - you can see your old life but regardless what you do you can not get back on that same path. It's a journey/rollercoaster we are unwillingly put on...... but It did actually make me review life and everything that we once thought important.
So some things from our old life are still in our lives but various aspects of our old life that were once seen as important were put in the bin and we don’t miss them....... as we develop an new understanding of life and living life ((hugs))
Thank you Mike for your understanding words.
I never thought I would miss work as much maybe not so much work but the routine. It truly is like living in a bubble watching people outside getting on with their lives.
I remember the feeling you describe very well. It can be a very isolating experience, but I hope you’ll find people here who will understand what it’s like and perhaps even some who are experiencing it at the same time with whom you can share thoughts and feelings.
The only other thing I would say is that I am now back to being one of those people on the outside of the bubble getting on with their lives. It might not feel like it but what you’re going through right now, can’t and won’t last forever, and this is all just a necessary evil you have to get through to get you where you want to be.
Here’s hoping everything goes really smoothly,
What is a Community Champion?
Of course its normal to feel worried about risks and side effects, but the science behind stem cell transplant is amazing her team will monitor her progress every minute of the day and respond to anything that she needs, because everyone reacts differently to chemo and drugs they always take a more cautious approach. Is your daughter having her own cells or a donor, if an Auto SCT she won't have to worry about cell rejection by her own body, she will not require anti rejection drugs but she will suffer from fatigue caused by the conditioning chemo. On release from hospital she will be given some books dealing with fatigue and various books on life after SCT. Fatigue will get better, age is on your daughters side and her SCT team will be amazing doctors and nurses. Support your daughter through this try not to show you are worried as Highlander would put it always be try and be positive ask questions of the doctors if you feel concerned. Good luck to your daughter, my wife is 71 she has just had an Allograft SCT and is on day +19 we still have a long roller coaster ride to. If something is concerning you there will be somebody on this group will have been through it and will have the answer.
Good luck to your daughter
Thank you for the message. It's just hard knowing we can't do anything to make our son better all we can do is support him and keep his spirits up.
I went into my allo sct with lingering pneumonia. It wasn't ideal but i survived! And auto scts are usually easier to recover from, if i understand correctly.
Thanks for your comments.
we found out last Christmas Eve so it’s been a lob year. good luck to your son. We are still waiting for date but just want it over with.
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