Hi Ihave a particularly
difficult to treat Splenic marginal lymphoma.Over a 3 year period I had a splenectomy ,5 different courses of chemotherapy ,numerous bouts of pneumonia & sepsis.As They were struggling to stop the lymphoma recurring after each different courses of chemo,It was told my only option was to have an autologous Stem cell transplant. Over a. 6 month period I failed many of the criteria but still felt it was worth trying to persuade my medical team to put me forward for an Stem cell transplant.Eventually I persuaded them Iwas prepared to take the associated risk having no other option.When my cells were harvested they only managed to collect 4 000 over a period of 5 days.The transplant was tough as my general condition was not very good but the day they told me my stem Cells were working was a truly memorable day. I had to spend a prolonged period in hospital but persuaded the staff to allow me to use an exercise bike which made me crawl out of bed each morning only 3 mins at first but gradually built up.I am convinced this is how I managed to avoid a chest infection or pneumonia.After discharge I found progress slow but eventually made progress .The Stem cell transplant gave me back a better quality of life,however I still continue to suffer bouts of severe infection but between times I was able to enjoy life.My best piece of advise would be to keep as mobile as possible I know without keeping mobile during the recovery period I would not be able to enjoy the simple pleasures in life Good luck to all going forward I now celebrate 2 birthdays my own birthday & my stem cell birthday ,!!!
Thanks @Thelimes for your experience of having a SCT.
You make sure you celebrate both your birthdays in style!!!
Well - Iāll keep you posted. 16 days to go.
Still to go I have
*consultation with my local team (but thatās probably just a keeping in touch thing)
*Covid swab and bloods
*Insertion of hinkman line and removal of picc line 
*Covid swabs and bloods day before admittance
Then 03 is now admittance day.
Iāll be having lots more monitoring than usual because Iām on the COSI trial which is adding an extra drug into the usual two.
I have ALL with the Philadelphia cromozone so I have been advised to go for stem cell transplant. I will be at Addenbrookes and transplant hopefully is Sept.
I am nervous, keep reading good and bad stories. I have had no probs through chemo blocks so hoping I will be ok.
Anyone else treated at Addenbrookes?
xx
Me - in 18 days time 
Good luck all of you with your transplants. Itās not pleasant but you can bounce back from them very quickly. I had a PICC line inserted and had to keep having the dressing changed every week whilst I was waiting for a bed to become available. In the end they didnāt use the PICC because they said it was too narrow for bone marrow cells to get through! I was lucky that my isolation coincided with Wimbledon 
Keep us updated on how it all goes.
Brilliant and I love the fetching bonnet.
Brilliant snowpeople @ChrisCKW.
Iāve just ordered myself a little Phoenix necklace with an engraved disc of a lotus flower and date of transplant as a little treat to put on in hospital when I start to feel better. 
Hope you get the tour sorted, lucky bike find!. Iām having lung function and cardiac check this week. Xxā:crossed_fingers:
I found lung function test funny - mostly because the doctor doing it was funny. Iām sure you will be good with both but Iāll keep my fingers crossed for you @Lyn99 xx
Oh @Lyn99 that Phoenix necklace with the engraved disc of a lotus flower and date of transplant sounds absolutely beautiful and such a brilliant treat to yourself, wear it with pride.
Ok, have quick tour of ward arranged for 27 July just before Hinkman line is fitted - will have had Covid test on 26, so they were more relaxed about me looking at ward
I agree Erica, itās a lovely idea from @Lyn99.
Iād copy her, but not sure what day Iāll have transplant. Brotherās donation day is 10, so as long as that goes well I should get transplant on 11 ā¦ but if they need more cells or they decide they have to give him general and take it out of hip bone that will postpone it a day or two.
Maybe Iāll order something when I get the Lāessence du Pete Bone Marrow gift xx
Hi Lovey People. Well had my appointment on Monday with the consultant and my badly behaving bloods are still misbehaving!! I have been started on Revlimid Lxazomib and steroids. They will monitor my bloods regularly and as soon as the bloods come to a normal range they will contact me to move forward for transplant. Thatās if all goes to plan 
I hope you all are doing well and coping with the heat at the moment 
. Love to all xx
Oh, @Danmar your naughty bloods are still misbehaving, eh.
I am glad that your bloods are going to be monitored regularly.
If only it was that easy that we could give them a good talking to or even perhaps resort to bribery to get them back in line.
I have this mental picture of your bloods being like naughty baby imps inside you.
Take lots of care Lovely Person.
Hi @Danmar sorry to hear that the bloods are still not in the normal range, sounds as though they will get it under control with the new drug regime. Hope the side effects are few and the benefits many!
@Summertime and @ChrisCKW just in case it can be of any help, here is our general information booklet on stem cell transplants - Seven Steps. Do get in touch with us if youād like copies posted to you (some people find it useful to write notes/questions for treating team in etc).
Some people also find this booklet useful - Eating well with neutropenia. as it also has some general information around stem cell transplant, diet and avoiding infection.
Please do give us a call if thereās anything we can do to support at any point, wishing you all the very best.
Thanks @Alice_BloodCancerUK X
Thanks Alice_BloodCancerUK
I have myeloma and had an autologous stem cell transplant 2 years ago at Addenbrookes, whose system is like a well oiled machine and I felt pretty confident about my care there (although I did pick up parainfluenza virus whilst I was in there, which led to me being readmitted a day after discharge for a further 5 days)
Our experience as patients seems to vary as widely as it is possible to imagine. Last year one of our support group had an autologous SCT and literally had no side effects at all, no diarrhoea, no sickness or nausea and no mucositis. Another one in the group nearly died, but her myeloma is only just rearing its head again after 9 years. I had visited (poked my head round the door) of a friend who had sickness and extreme nausea, from day 1 for 3 weeks .I then was expecting this for myself, but felt fine just a little fatigued for the first few days, then manageable diarrhoea.
Between days 8&11 I was absolutely zonked out, just slept most of the time. I felt nauseous if I didnāt eat regularly, and only fancied odd things, but I was only sick 3 times, and that was before I realised about eating little & often . On day 12 I woke up and immediately realised I was a little better & could feel improvement hour by hour so that by lunchtime I felt truly elated, I knew I was over the worst (even though I then got the virus)