[kaychappersParticipant]

Hi everyone not been on the site for soooooo long, but been reading a lot on here and found it so useful as always. Been in hospital having SCT. Was very lucky with side effects. One bout of sickness, one bout of diarrhea and in and out of hospital in two weeks. I identify with the hot flushes and PN which has been posted. I have just been put on Gabapentin. But just asking if anyone has suffered with what seems like the whole of my bodies bones hurting. I feel like a 47 year old going on 87! I know it has only been 7 weeks since the transplant, but it seems to be getting worse rather than better. My clinical nurse keeps telling me to do gentle walking, but what with the PN and aching bones I dont feel that I can do anything and it is affecting me mentally now, just dont seem to want to do anything.
Kay x

[MinParticipant]

Hi Kay
Is it possible that your getting GCSF injections? If so this may be responsible for the aching bones. Two paracetamol should help.
If your not on GCSF then I havent got a clue but your staff at the hospital are the people to help you and make sure they do, dont suffer in silence.
On a brighter note well done on getting thru the SCT without too many mishaps and hope your start to improve soon. Just take your time and dont do or try to do more than your body wants to until its ready.
Luv MIn

[wendyduffieldParticipant]

Hi Kay,

I am at the same stage as you, about 7 weeks post transplant and like you I got off relatively lightly from some of the side effects of the high dose chemo and was out in two weeks and 1 day. I also get very achy bones expecially after walking and sometimes I can hardly walk up the stairs! Also get very tired especially in the afternoon. I get pins and needles in my hands and feet and am told by my doctor this is due to the velcade I was on prior to the transplant but that it will pass. I think the achy bones are defitinitely due to the high dose chemo and I do try and walk at least a mile everyday despite the aches. It may feel worse not better because you are using your muscles more than you were when you were in hospital and when you came out. I think if you dont feel like doing anything dont, and if your body is tired then rest it.

Take care

Wendy

[kaychappersParticipant]

Thanks Min and Wendy. Paracetemol seem to help. I also have been told my feet hurt due to the velcade, I only hope it does wear off. I think I just want to feel better yesterday, even though the consultant told me it will be 3-6 months. Patience has never been my strong point. Sorry to hear you are going through the same Wendy, but nice to know it sounds like Im normal 😀 Kay

[mhnevillParticipant]

Hi Kay

Like others I'm pleased to hear that over all your SCT has gone well. I know bone pain can be so debilitating and depressing. Hold in there and do make sure you are given good pain killers. It does take a lot of patience to find the best for you.

Be kind to yourself.

All best wishes.

Mavis

[HelenParticipant]

Hi Kay
I'm 10 weeks post sct and still walk like an old lady! I just keep popping the paracetamol and walking at least a mile a day too. Improvement is much too slow for my liking, I keep wondering if I'm turning into a softie!
Helen

[kaychappersParticipant]

Thank you all so much for your replies. I think the answer is BE PATIENT and just do as much as my body will allow.
Best wishes Kay

[DebsParticipant]

Hi Kay,
Well it is actually my 100 day today…I think!! Happy Bday to me!
I too get achy bones….feels like I've just done loads of exercise and is mainly in my calves. I think it is the PN personally as it gets better with the morphine….well not better, just more bearable.
I am now on gabopentin and nortryptalin. It helps the PN loads and along with the morhine I can forget about the pain/ discomfort….just get tingling feet as it all starts to wear off and before the next dose is due!
I hate the fact that I am going through this and the menopause and all this after a transplant, but like you, am grateful my transplant wasn't any worse and that I didn't really suffer in the aftermath.

To give you all hope, this week, Tue was hospital all day, Wed I went to the London Eye and Aquarium with the family, Thursday we pottered round the house, Today we went to Warwick Castle all day, tomorrow is off to Nick's nans, Sunday is off to our local caves and friends over in the afternoon and Monday is Legoland!!!! So life does go on (athough I think I may have to find space for a nap tomorrow at some point in the car journey to Derby). I'm no superwoman but feel that this week I have really turned a big corner, helped by the news that I am in Very Good Partial Remission 🙂

Onwards and Upwards!
Debs x

[HelenParticipant]

Hi Debs
Good to hear you are in VGPR and have been getting out and about, I'm a bit set back this last week, terrible cold and another bout of colitis, so another scan today, probably a virus attacking the weak spot. I'm very frustrated with the slowness of recovery so it is good to hear you are feeling so much better. Are you still in the myeloma trial or were you taken out of it?
How is the hair doing?
Helen

[KeithH17Participant]

Hi Debs can you tell me what's mean't by "very good partial remission" and how the Hospital can decide between that and complete remission?
Is it because your PP's are still showing albeit at a low level,mine are 2.00 g/l and still falling.
I did make Zero after my first sct and they stayed that way for 2yrs.
In other words is the criteria for CR Zero PP's?

Oh and by the way I ache like h#ll also,it's par for the course I guess.

Thank's Debs.

Keith.

[PerkymiteParticipant]

Hi Kieth,

Remission is not just the PP level as I understand it, although that is a main indicator. I have been told that they look at Blood Measurements of various indicators like White Blood Cell count, Neutrophils etc… . If the PPs are ZERO and the rest of the measurements are within their correct zone or parameters then that I think is remission. If any of the measurements are not in their correct zone or the PPs are measurable then you are in partial remission, whether that is a very good partial remission is probably down to the Consultant!

My Consultant told me that they no longer use the term remission at my hospital; it is now referred to as ?stable?. So my Myeloma is stable.

Kindest regards ? vasbyte

David

[DebsParticipant]

Hi there.

Helen, still in the Myeloma XI trial and doing well. The hair is growing…seems to be sprouting all over the place now! May even need a hair cut soon…lol!

Keith, as David says, it may be different consultant to consultant, but mine said that I didn't class as complete remission because my pp wasn't zero. Apparently you need to have a bone marrow of less than 5% and a pp of zero. But then again, some people don't have the bmb so I'm not sure quite what happens then!!

Debs x

[HelenParticipant]

Debs
I have hair follicles! There is hope for hair.
Helen

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