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...
My daughter is about to be admitted for an autologous stem cell transplant. She lives in another part of the UK from me and so I will visit and stay a couple of days come back to where I live and then go back a few days later. Does anyone have any obvious practical suggestions of what I need to consider and prepare for .....
Hi again Hotpants and the rollercoaster is about to happen.
First, THIS would be a good thread to have a look at where we have gathered our thoughts about what helped when in the Transplant Unit - just hit the green link.
Everyone will deal with the weeks in a very different way. I had two Allo SCTs and during my first SCT I was watching films, went through a lot of books and had no issues....... My second SCT was so different, never really watched any films or TV, the books all collected dust as I was rather ill during the process.
The food in my SCT unit was actually ok but this can be an issue in other hospitals so check to see what the ward staff will allow you to the in to break the mundane food.
In what SCT Unit is she having her SCT?
What conditioning is she having - conditioning is the chemo that is used to kill off her immune system before she gets her cells back. If you know this we can help with our first hand experiences.
The main thing to prepare for is for the unexpected..... but these SCT teams have seen it all and can deal with all the issues that will come along.
You can see some of our treatment stories if you hit our forum names like Thehighlander
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.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Thank you, I’m new to this forum. My daughter is to be admitted to the haematology and oncology unit at Bristol Royal. The plan is for her to have BEAM but this will be confirmed on Wednesday. I will put more information on my profile ...I didn’t understand about that. Thank you for the tips...we will find out more when we meet the stem cell transplant team next week ....
There’s a lot to take in....
Just wanted to say that the BRI is fantastic, I had both my transplants there and the team were amazing, I’m sure your daughter will be in good hands. If you have any questions specific to Bristol, I’d be very happy to help.
What is a Community Champion?
This is a link about BEAM conditioning. One of the BEAM elements is Melphalan, although this part is only for 30 mins it is very very strong chemo and the final part of the conditioning. Do hit THIS link to see some very important about having Melphalan.
Good to see you can ask questions to Greg as first hand experience is like gold.
Keep your questions coming as we are around to help.
Thank you Greg, that is very kind of you and I am sure we will take you up on your offer. I’ve just read your profile....what a journey you are on....it’s relentless...
To be fair, it was pretty relentless for about 18 months, but actually I’ve been treatment free from myeloma for over 4 years now, and I pretty much live a “normal” life. I’m really hoping the same will happen for your daughter.
I can’t speak highly enough of the team in Bristol. My consultant and the nurses built a personal relationship with me, and even now when I go back for my 3 monthly check-ups, it is like going to see old friends. Of course, no-one would ever choose to have an SCT and it is not a pleasant experience to go through, but the team there really care for the patients and try to make the process as bearable as it possibly can be. I’m really hoping your daughter will experience the same.
I too had a daughter who lived away while going through treatment, it was actually 150+ miles away. Since Mums can sometimes be able to drop everything and be there, I was. She felt I would be able to live at her house and drive her car and was happy for me to do so, so that I could be there every day during daytime hours for her auto. Her housemate stayed overnight, in a big recliner armchair that the staff found for her. It worked and daughter was almost never alone! sadly her auto failed as her HL proved primary refractory; she called it as stubborn as she was, so after a good many more treatments and trials we needed to repeat the caring exercise, this time for her allo SCT. Fortunately that all worked, though I guess I’ve spent a lot of money (and time) on trains between our various homes (she moved between the 2 major hospital stays) but I would do exactly the same again in a heartbeat if needed!
shes actually supported me and my disabled hubs too, staying here to help after my Mx. So it was ‘payback’ time, bless her. But she’s moved much nearer over the last 2 years.
sending you a big hug xxx
Thank you Moomy, your warm response and empathy makes a difference ...... I will continue to do my best to support my daughter in the coming weeks.....we see ourselves as part of a big team .... her father, brother and sister and family members friends and her ex partner....we all are happy to give whatever she needs from us. We feel privileged to have in our lives a young woman who is resilient and brave and so so positive....
i know that we have tough times ahead and I am pleased that I have reached out to the Macmillan community for advice and support because I know that I am going to need everything available to support me in this....
Hi again Hotpants,
your family sounds like ours, close knit and caring in spite of miles apart. She will do this and come out the other end! Your family too have had it rough, but I think it brings families closer when difficulties like this arise.
i noticed your daughter too has had a good response to Brentuximab. If it fails alone then ask if she could have it in combo with Bendamustine as it seems to work even better.
sending more hugs xxx
All the family and friends are involved in a Stem Cell Transplant and the support of both the person having and the the family is important.
We live in Inverness but my SCT Unit was in Glasgow - a 9 hour round trip, so over my two SCTs we were away from home a total of 11 weeks........ It actually was ok for me as things were always happening in and around the ward, but it was hard work for my wife being away from family and friends for so long, but a good number did the 9 hour trip just to see me but most importantly to take my wife away from the little room that she spent hours sitting watching me sleep.
When we were packing the car to drive to Hlasgow the folks next door asked if we were going on a world cruise as we had lots of bags. But we had to take lots as I was required to have a clean set of cloths every day and night day, so washing cloths was very hard.
Friends would come round to the house and do the grass and when we got home the fridge was full of food...... it was all the little things that helped us through this time.
Thanks Moomy, we have raised the possibility of BvB with her consultant prior to treatment starting and then again because my daughter had concerns that it wasn’t working which is why she had an early scan after 3 cycles rather than wait until after the 4th. If the scan had not been pet negative BvB would have been the next stage. Now she has had the scan results which show that it is working as a stand-alone she will just have the final treatment this Wednesday and then hopefully be admitted the following week on 19th for the STC to begin....she’s already had her stem cells harvested back in August...
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