Good luck for tomorrow Charlie,
See our post in the sting above. Michelles post is very upbeat and it has given us some heart here as well.
This mm thing, if it can't be beat is here to be tamed!. Our catch phrase is failure is not an option so go for it Charlie!
Vicki and Colin x
Chris,
Do not be disheartened! That is exactly what happened to Colin as well. Day 1 we wnt and his count was 5. There was a man there, not sure what he had but his count was less than 1!. Day 2 we went and colins count had only risen to 7, so that was first attempt failed.
We understood from the nurse and the doctor that this is a very common occurrence first time round. It really phased us as it was not what we had expected. We though stem cell harvest is achieved with gcsf and no worries about not getting the right amount. After some panic on our (well my part!), we spoke to the specialist nurse. She thought it likely that our plan b would be to use cyclophosmahide, with gcsf to try to prize them out….also apparently the gcsf counts can jump up quite quickly according to the nurse, so you never know your bloods might leap up over night!
Good luck to you and happy harvesting…..
Vicki and Colin
Hi all,
Thanks for the encouragement. We are a lot calmer now.
Ali, thanks for the information,that's good to know. With regard to the cycloprime, did your mums hair just fall out or was it a gradual thing where it calm out a handful at a time. It would be useful to know so that I can prepare Colin or cut his hair ha ha! That's a useful tip re the driving, but at the moment he said it is still quite tender and looks like there is some yellow bruising coming out…..I hope that's what it is, and like your mum he says it itches.
Ali, it's a big week for your family this week. I wish your mum, you and all the family the very best on this SCT journey and may your mum be pain free and infection free!
Eve, I'm always on the look out for infection. Colin is due to have it dressed and flushed tomorrow/Tuesday so we will know more than. The problem where he has his is that it's near his underarm and the clear dressing keeps coming unstuck! Hope all is well with slim.
Happy Olympics……where are our gold medals! LOL
Vicki and Colin x
Hello pennie and 'batter boy',
I have read your posts with interest. I can't be of great help to you, but you have both been a help to us.
My partner Colin was diagnosed in October 2011, age 55 and has now following treatment awaiting an SCT sometime in the next month. When he was diagnosed we were so concerned about the prognosis we had read about on the internet that we felt it was absolutely the end. So it is so good to hear that myeloma can be lived with….and you have both dealt with it for so long. How is your quality of life if you don't mind me asking, are you able to do most things?
This mm thing is to be beaten !
Regards
Vicki and Colin x
Hello chris,
Good luck to you. My partner Colin was diagnosed with mm last October and is now waiting for SCT. Last week we went for stem cell harvest at south mead too. Colin did not have cyclopriming, and the first go did not work. However we think cycle is the next plan.
As reassurance the staff and doctor there, debbie the nurse and dr sohail (surname beginning with A), were lovely. Kind and informative.
Hope all goes well
Vicki and Colin x
Hi Charlie,
As colins partner. I can only really comment on what he has said to me and what I have observed. At first Colin was very scared, before taking any of the drugs, just reading the literature!. That said we bit the bullet and went for it. He had days where he felt lightheaded, sometimes breathless, very tired by early evening, at the outset. The dexamethasone made him slightly grumpy ha ha, and he had trouble sleeping. He would usually get up in the night and have a bowl of cereal and read for a bit. He wasn't sick, sometimes felt a little shaky
As far as I can remember he had about 4 days in total in bed, with a few late starts. It would tend to come over him in a wave. One minute he would be okish and the next would have to go to bed. He did pick up a few infections because of low blood counts but the hospital are well used to dealing with those! There are other people who had many less infections than Colin. I suppose I would sum up that he had more good than bad days, was able to go out and about a bit, have friends over for dinner etc. However we were always careful when we knew his immune system was down, and having early meals as he got very tired later on. Touching wood though because at the moment he is near normal siting for his SCT. My friend who had breast cancer told me to remember it's the treatment that makes you feel rough and not the illness. Not rough all the time though.
As others have said this is a very individual condition and each one will react differently to the drugs etc. It is not easy because it's the unknown and none of us are used to it. There are times when you feel in control and other times not.
We wish you well, and hope you can make the right decision for you. It seems like a long road, but one worth travelling to make you feel better!
Vicki and Colin x
Hi all,
Yes it has been a bit of a downer! What we thought odd was that Colin had one more injection to go and they did not bother with it, and told us not to come back on the Friday. I do wonder whether if he had had the injection on the thursday night he might have been ok to go on the Friday….we won't know.
Tom, he had 4 injections in total in the evening, there was a 34 million dose and a 13 million, whatever that means. The booster injection profiloxor (sorry not sure of spelling!), is not available in the south west. We spoke to the SCT nurse on Friday and she reckons the next step will be to use cyclophosmahide with the gcsf injections to mobilise. Hope so.
With regard to the Hickman line, it's on the right side, is he allowed to drive, as it will be right where the seat belt goes across!
Eve, hope slim is doing well. It's a long time for the line to be in, but as long as progress continues who cares. Funnily enough, his appetite at the moment is not great, and he has spotted I am trying to feed him up so I think that puts him off more! LOL
Ann and Eva thanks for your good wishes. Hope those damn cells are in the back soon. To coin a phrase, onwards and upwards. Hope Peter is doing ok Ann
Take care all
Vicki:-)
Hi all,
It has been another one of those days:-0 Unfortunately the cell count only went up to 7. We had one more injection for tonight but they have decided not to bother with that and told us not to go back tomorrow. So it's the worst of all worlds. The consultant is not avaible to discuss until next Wednesday so we do not know what the options or plan is, and it's very very likely that colins SCT date will be put back. I understand from the nurse that if they do have another go then they normally leave a two week gap, which is hell and with Colin having the line in makes things feel even more tantalising.
No one has menTioned double dose of gcsf injections or prefelixor or mobicol (not sure if that's what it's called). Ann gcsf injections are used to mobilise the stem cells to come out into the blood stream, glad to hear all is going well with Peter and you have your sights set on a november date. I hope you have success with the insurance, they do make it hard!
I know they keep saying this is not unusual but this whole mm thing is sadly very unusual to us and it just seems to turn the screw a bit more! It is going to be a hard few days and can't help feeling more than a little scared that the mm will flare up before we can even get to an SCT.
Sorry said I would feel brighter today, and although the nhs staff are absolutely great I still feel rubbish, as does colin. Hope they come up with a plan soon x
Vicki
Hi sherif,
That's a great response for your mum especially after a few cycles. That's great. This site is very good to ask questions, and the nurse is very helpful. I know others have asked Ellen lots of questions…..
Hope everything goes well
Vicki
Mike,
I see that you are in the forest of Dean. Colin and I are too. We also go to Glos royal. This is where Colin goes for his monthly check up and blood test and an appointment with the consultant. At diagnosis we saw Dr Sean Macpherson. We've also seen Dr Johnny, Dr Frewin and Dr Chavda, all of whom we cannot fault, are prepared to answer questions however small, or seemingly insignificant. Colin was asked to go on the myeloma x1 trial and whilst each person responds differently he has had a good response and we are now waiting stem cell harvest and then a transplant, initially at south mead Bristol and then the long stay (about 3-4 weeks) in cheltenham.. We have taken precautions about lifting, and Colin has a daily dose of bone protection, in tablet form.
Hope all goes well for you, any questions about local issues please ask, we might know (no substitute for the medics though).:-)
Vicki and Colin
Hi Helen,
Thanks for the information. That's good to know. It's so hard because we were dreading the SCT and now they can get the stems cells we are willing them on! It is a very individual condition which we should know but now;it's just all the twists and turns that can catch you out!
Hope you are keeping well,
Vicki (and Colin) who is sleeping now because he is shattered and got no sleep on the overnight stay in hospital due to a very poor man who was very disorientated! And very noisy!
Hi Charlie,
My partner colinn was diagnosed with mm, age 55, a complete bolt out of the blue shock. He was given the option of myeloma X1 trial. We don't know what the treatment would be like outside of the trial because we elected for the trial. On it we have found it to be hard but the treatment and support received second to none. He got the revlimid,cyclophosmhide and dexamethasone. He had that for 7 cycles to complete remission, following now is a stem cell harvest (1st one today but not enough to go), then a SCT.
I cant say it has been easy, it hasn't but if it gives Colin the chance of a long remission and good quality of life then that's good enough for me. There will be sone ups and downs, however on balance it's your choice about the trial but I would go for it!
Good luck
Vicki and Colin x
Hi Tom, Keith, eve and Ali,
First of all Ali, hope all goes well for your mum 1st august onwards.:-) And again thanks for all good wishes!
It has been a very disappointing day :'-( . The harvest did not go ahead. The number in colins blood count was 5, when it should be 10. We have been asked to go back tomorrow for another go. Colin said my face was a picture when the doctor told us. To be honest I wanted to round up every doctor, nurse at any hospital to find somebody to make that number be 10. I feel scared and colins his usual self of trying to be controlled. I can't see how one injection tonight will make the huge difference between 5 and 10. I thought I read in one of dais posts that they would consider doing it at .8?
The doctors and nurses did not seem phased, and said in fact it was common for this to happen but when you get yourself in to the mindset it is a huge come down when nothing happens. Sorry to be negative.
Does anyone know, is the gcsf a cumulative effect? Do they build up in your system? To date Colin has not had a lot of pain although he is already on strong painkillers for his back. It's the only time I have felt like I want him to be in a bit of BEARABLE pain!, if it means those stem cells are mobilised! Let's hope for s better day tomorrow. The doctor has also said to keep Friday free.
Suppose we should enjoy the sun this afternoon, but to quote that song, it's raining in my heart at the minute. Will try to be brighter tomorrow 😀
Vicki
Thanks Helen,
All going well so far. Line in and 3 lots of gcsfs done, with sone pain in lower back. Other than that,seems ok. Colinnsaw one of the consultants today and she's said for the second time, don't be disappointed if they don't get enough. We don't know whether she means first time, or at all, which is slightly disconcerting. 🙁 we will know end of this week though.
How are you doing with your return to work, and finding enough time to do your hair?
Vicki
Hi Tom and ann
Apologies for the late reply. Just got back from hospital. Colin went in today to get his line put in, and all seems to be going well so far. 3rd lot of gcsfs done and pain seems ok, apart from in his back. In good spirits. We'll see how the harvest goes as long as the line is in the right place! Colin should be coming home sometime tomorrow.
It's been an interesting weekend. I'm so paranoid about bugs when Colin comes home, I've changed the carpet in the lounge and dining room, and got the 3 piece cleaned…..what did I get for my effort, an allergic reaction to the chemicals used on the sofa and ended up with swollen face, eyes and a rash! Nearly gone now!
Ann so sorry to hear about your holiday, at least you got some sun but very scary, you were both brave to go!.good luck for tomorrow , I can't say things get any easier but we are learning to deal with it better, with the odd blip of being overwhelmed.
Keep well, and Tom thanks for your support and humour, it really helps.:-)
Vicki x
