This topic contains 72 replies, has 11 voices, and was last updated by 
Carolsymons 10 years, 8 months ago.
Yes, Buddys, not Bodies!
There seems to be a few of us that are starting Stemcell harvest in December, me obviously. As it can be a lonely and worrying time for us perhaps all of us who are going through the process together can post on this thread how we're getting on, what's happening etc. A sort of micro self support group.
So I've had the Cyclophosphomide on Wednesday and begin with the injections to stimulate stemcell production tomorrow. Harvest is planned for Monday 9 Dec.
I am a bit behind you…Hickman line app't this Monday, 10 hours of intravenous chemo (etoposide not cyclophosphamide) on 11 December, 10 days of G-CSF injections, collection on 23 December, transplant early January.
I have been back at work part time for the last 3 weeks, but as consultant says I will be neutropenic after the chemo, guess I will be off sick again.
Carol
HI Dick – I have been off treatment since July but trying to get SCT organised has taken a while – harvested beginning of October and been waiting for a bed in Leeds for nearly 5 weeks – I am the next bed available so expect to be in next week so will most likely spend all Xmas and potentially New Year in hospital. Will post if able, I have considerable kidney damage so have been told to expect a rough ride but I am fit so that may counteract that – fingers crossed. Good luck and let’s hope for a fabulous New Year drug free!
Hi Dick
Graham had Cyclophosphamide on Monday 2nd December and started the injections Tuesday 3rd. We watched a video of someone in Ameerica having his first inections just to make sure he did it right. He is doing fine. He has felt nauseous a couple of times but that’s it and not sure if he is having the pain expected. In the middle of the night he said he had some pain and I said good – no pain no gain! However, I expected him to be in a lot of pain and that’s when you can tell it’s working. He goes Monday to find out if enough stem cells have been made and then back on Tuesday to have them collected if enough. Hope you both are successful next week. Good luck also to Carol and Rebecca and anyone else going through this this month. It’s so wierd at the moment as if Graham tells me he is in pain this week I think good which is totally the opposite of the last 11 months. Graham shaved his heair to a number 1 today so is nearly bald now ready for when his hair drops out. We went out with some friends last night but you just have to be careful now where you go and avoid crowds where you might pick up infections as your resistance is now so low. I think that is harder at this time of year.
Best wishes
Angela
Hi Angela, I was told you don’t necessarily get pain and still have a good harvest however, the pain I experienced the day before collection was a throbbing, pulsating pain throughout the chest and back mainly. At harvesting the lady said it’s like labour pains – and it was – and she had been told that a lot of people only get relief by being on all fours to relieve the pressure – again like labour – but it was too late for me to try this out as I had the collection that day. Might be worth trying if it does get very painful. I felt the pain was excruciating but, like labour pains, it’s a pain quickly forgotten! Good luck
Hi Ang and Rebecca,
Well I don’t know about labour pain and unlikely to find out but on day 4 of the injections (Thursday), I had very excruciating pain in my lower back. I felt I had been kicked or had a kidney infection. It lasted 24 hours only and then have had just the odd throb since then. This has been mainly in the hips with just a bit in the sternum and shoulders. Today is the last day of the injections. Ang, I had the Cyclophosphomide on Wednesday last week and started the injections on Sunday so had a 5 day gap between. I also felt nauseous and the doctor suggested anti nausea drugs and Dexy, the Dexy I took for 1 day, the others I didn’t bother with. Apart from that no real problem. A blood test on the Monday revealed a large increase in Leucocytes followed by a big drop on Thursday (18.4 down to 1.9) I have been warned about fever, anything over 38.2 and it’s straight to hospital, so far so good.
As for thinking pain is good Ang, I said the same to my Oncologist. When he asked, I said “Pain is good, it shows it’s working”. Tomorrow is the big day for me, hospital, tests in the morning and if ok, collection in the afternoon.
Rebecca, I am surprised that you finished treatment in July and still not had SCT. Do you have a slow acting MM? Well, let’s hope that they can get you in next week, shame if you are in over Christmas but that may have benefits – like not having to eat Christmas dinner with relatives you don’t get on with (assumption I know)or getting away from a nagging husband and over excited children.
Anyway, I will update once I’m out again.
Richard
Hi Richard
So you both have a big day tomorrow as Graham will also find out if enough stem cells made and if so he wil go back the following day (although they said sometimes it is possible on a Monday to remove them – they will see on the day). Let’s hope you both have made enough.
Graham started with pain after tea last night and still has it now in his lower back and in his stomach area and he wondered if it is a kidney infection. I have reassured him from what I have read on this site that this is normal and this is good and I suggested getting on all fours and that also helped thanks to Rebecca. He is now in bed resting and timing when he can have his next cup of tea due to not being able to have milk at certain times due to the tablets. It’s so strange seeing him looking forward to a cup of tea rather than a glass of wine.
Good luck for tomorrow
Angela
Hi Richard – the delay in SCT has been because I asked to go to Leeds for a second opinion to see if they would take me (I have very poor kidney function) – slipped through the cracks of 2 hospitals doing bits and then told had to have a hickman line before I went on waiting list – so my little hospital did that straight away then Leeds failed to tell me of huge waiting list! I was told in August at my referral I needed to be done ASAP! Then I heard they have diverted some to other transplant hospitals because they had been waiting so long. Saw my own consultant when having my line flushed and he phoned them and am now the next available bed as my consultant was so concerned that I have not had treatment and no-one is testing me presumably because they see no point as they are now waiting for the SCT? My consultant did ask if I wanted to get a date from another hospital but when you are told your next it seems I may make matters worse jumping ship. Been the most testing of time of all now and am hoping its the next few days.Leeds has a very large unit doing many transplants and the most critical get the bed.
Hi Ang,
Back home after blood test in the morning and Stemcell collection in the afternoon. All went without a hitch, it took me 3 1/2 hours but they are very pleased because they collected 10,000,000 cells per kg of bodyweight. They say they only wanted 2M /kg. No pain during the collection, all very easy as I’m sure others will tell you. If Graham is going back tomorrow then tell him not to worry, he will feel a lot better after.
Next stage is SCT and they have said that will be in 4 weeks, straight after Christmas. Hope Grahams happens quickly as well.
Richard
Hi All
i am a new member to the forums so please bare with me lol….
i had my harvest in October and I am going in next Monday for my transplant (16th)….
I have read the booklets and heard the docs and nurses, listen to family and friends but I am glad of this place where I can talk with others like myself…..
Dont get me wrong everyone around me are super good….
hopefully you all know what I mean….
thanks
Caroline.
Morning Caroline,
Nothing like knowing there’re others in the same boat, we can learn so much off each other. Now you need to keep us who are following in your footsteps posted on your progress.
Richard
Tonight I go into Hammersmith Hospital, London for the first step of the stem cell collection….10 hours of chemo….very anxious about his amount of toxin entering my body. How ill am I going to be? Transplant tentatively scheduled for early January.
Paraprotein now up to 4 (was 0) and lambda light chains 252 (were 61) I am so frustrated that these numbers dared to creep back after only 3 weeks off initial drugs. (CTD)
Carol
Carol,
You are following the same path as so many others. They all say it’s hard but doable. Just concentrate on the benefits after SCT – Positive Mental Attitude. You’ve still got to see your granddaughter in the New Year.
I am sure you’ll be fine.
Richard
Hi Richard
Glad this part is now over for you. Graham went yesterday but there were only 2 million cells per kg. He had to go back at 8.30 this morning for another blood test and this time 8 million so it has quadrupled since yesterday. He now has got go back at 8.30 in the morning and hopefully the cells will have increased again and he can then have the collection so third time lucky hopefully. Graham was having bad pains in his chest at 6.00 am today and thought he was having a heart attack but luckily he was at the hospital not long after and they reassured him this is normal. I will update you again tomorrow.
Best wishes
Angela
I’m sure Graham will have given up his stemcells by the time you read this, hopefully it went smoothly. Let’s hope the next stage happens soon.
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