[HelenParticipant]

Hello Eve good news for you at last, Can't help with london, only ever use public transport there. Hope you get away, i managed to fit in a trip to France between stem cell harvest and transplant so use that time well!
Despite having pneumonia now I have booked my ticket to New Zealand today and got insurance for both of us- husband only £50 cheaper than me because he has mild asthma:-P.
Love Helen

[HelenParticipant]

Hello Keith
See you on Saturday
Helen

[HelenParticipant]

Hurrah, hope it's a very long remission
Love Helen

[HelenParticipant]

Hi Terry
I didnt have the chemo priming either, just the gcsf injections, then I had a needle in each arm and lay flat on my back for 5 hours the first day and an hour the second day. They got enough cells for 2 scts. I took a book but couldn't read as couldn't bend my arms to turn the pages! I could not get up to go to the loo either, but had thought this through before and only had one cup of coffee before I went in. I took 2 bottles of water with me and sipped one during the procedure and gulped the second when finished. I did listen to an ipod for a while but like Andy the nurses were busy and chatted a lot and kept me amused! It all went quite quickly. I was very tired and washed out for about 3 weeks afterwards. They don't give you a transplant date at our hospital until the harvest is completed but it is about 4 weeks later.
Good luck with it
Helen

[HelenParticipant]

Dear Bridget
This must be such a blow for you, I hope they can sort it for you soon, keep going, you really are a tower of strength you know.
Love Helen

[HelenParticipant]

Hi Penny
It's really hard to describe this procedure, no one wants to put you off, but as it is still the best hope for longer remission especially for the younger age group, i felt i just had to get on with it. I'm sure you have read some of our stories and know how different it is for everyone.
It is unpleasant to go through, terrible sickness and diarrhoea for many days, but it is time limited, about days 5-10 are the worse, both for you and your family who can only watch and hope you are going to be all right. It is hard to be in hospital too, the staff have seen so many of us all pretty much as ill as each other so they do not seem to worry much about us. Risk of infection is very high when your immune system is down. After you get home it's a case of eating and exercising and being chronically tired for weeks. Be prepared for the long haul, your mood will be all over the place – up one day down the next -you have to fight to stay positive some days.

Listen to your body, it is very clever at telling you to rest when you need to rest and tell the medics if it feels wrong, then they can fix it. I'm constantly surprised in all of this at just how tough our bodies can be, and how they mend.

I'm now 6 months post sct, had a lot of post transplant infections but now I'm really good for a few hours every day then I get tired as the days wear on. I hope to be back to work soon but know I'm not ready yet.
Hope this helps, every one else will probably have a different take on it, this is mine and it is a personal journey for all of us.
Good luck with yours, when is it?
Helen

[HelenParticipant]

Aw Tom, it's a goodie but I think 'thank you' from LZ2 is my choice. Bit smooth but what does that matter to ageing rocker. Love Helen

[HelenParticipant]

Hi Carol
I'm nearly 6 months post sct now, I was really well for a few days before the stem cell collection gcsf drugs started so had my hair styled short and went away walking, after the collection ( it took me about 3 weeks to recover from it, I was particularly slow!) I was again very well for about 10 days before sct so we went on holiday to France and did as much as possible, fitting things around the multiple appointments during the workup. We even threw a big party for family and friends as I felt better than I had for years.
As for the sct, much ice to suck during the procedure, lots of baby wipes or equivalent, many pyjamas, towels, pants, (or an efficient laundry supplier?) skin moisturiser, lip salve, radio, magazines as well as phone and iPad though I only ever listened to the radio as I wasn't able to concentrate on reading or writing. Hair tends to fall out around day 12-14, I kept the wispy hair that was left for a few weeks until I felt able to cope with cutting it all down to 1/2 an inch, I found losing my hair distinctly traumatic, even now it is only about an inch long.
Hope this helps
Helen

[HelenParticipant]

Amazing! I'm truly impressed with the skill. On a different note, I'd like a bit of Led Zeppelin
Love Helen

[HelenParticipant]

Hi Jet
I'm a couple of weeks behind you, mid august. Debs is Ms July! I'm ok, been a much slower recovery than I expected, still tired and have trouble with an unpredictable gut and all the pain and unpleasantness that goes with it, but I'm getting there, enduring the lenalidomide, trying to eat properly and do normal stuff, but it is hard work and I'm not very patient. Keep in touch
Love Helen

[HelenParticipant]

Dear Jet
I'm so sorry to hear about your sct, I hope the Velcade works effectively for you.
Love Helen

[HelenParticipant]

Hi Gary
I'm with Wendy on this one, myeloma nurse specialist here on the site or at hospital might be able to explain more, does your sister see the consultant alone? If she is this confused she should have someone with her to ensure that there is no misunderstanding. High doses of dex can cause paranoid and depressive symptoms and should be reported to the medical team. Plasmacytoma can exist without myeloma in the bone marrow but she would stay under constant review to make sure it doesn't appear. You don't say where you are?
Take care
Helen

[HelenParticipant]

Hi Chris
I had complications which are resolving at their rate not mine! I do keep wondering if I've just turned soft but they assure me 'no, just everyone reacts differently' On Friday it will be 1 year since diagnosis day, and it has been very full on since the start. I have apparently been ' very sensitive' to all the drugs and only time will tell if that's a good thing! At least I know I've had them!!!! I found the high dose chemo bit was ok, do the ice cube thing to stop your mouth being more sore than it needs and be prepared for the next couple of weeks to be quite unpleasant but it is time limited and does resolve.
As I'm in the myeloma xi trial I'm taking the revlimid consolidation/maintenance therapy which makes you feel tired so that might be delaying me still, though I'm better now than I was at the beginning when I had it with the induction chemo.
You will need business help even if only to stop you worrying about it as much while you have your treatment.
Keep asking the questions, we'll try to help, i'll go and try to deal with personnel now……………. This may take some time
Helen

[HelenParticipant]

Hi Peggy
There are some pharmaceutical cool bags available which keep drugs at the optimum temperature during travel etc, I had one at work a few years ago. It would not be impossible to find out from your specialist nurse and the pharmacy department you attend. They are VERY expensive. You might need to approach a local charity to see if they could provide one if that is the only way to travel. However if you are going to a specific place you could arrange to collect your EPO from a local pharmacy as you need it?
Hope this helps
Helen

[HelenParticipant]

Hi Sarah
All in one go is good, it took me 2 days but only for an hour on the second day, and the feeling of 'kicked by a horse' lasted for about 3 weeks afterwards, so enjoy the time now before the sct.
My daughter did the great north run last year for blood cancer research and raised a couple of thousand, people do post the links, we didn't as I was still not telling anyone I was ill!
I'm now 5 months post sct and next week it will be 1 year since my diagnosis, and while I'm not 100% I'm tons better than this time last year
Good luck
Helen

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