[SarahJaneParticipant]

Been off line for a while, trying to 'have a break and enjoy myself' as my nurse told me.

After 5 cycles of REV I progressed to priming and stem cell harvest, but it wasn't to be, even after 10 days of GCSF injections my levels were still too low. It seems that this can happen to patients on Revlimid and although I was warned I had everything crossed for a success.

So now I start again on 1 June with the chemo/injections. The break of almost 10 weeks will of been good, but I just want to get on with it and worry those horrid MM cells are doing their worst.

Having survivied with no hair loss, bang on target 2.5 weeks after priming chemo it started falling out. So head scarves and hats it is, and an excuse to go shopping 🙂 My 10 yr old is now fine with my new look (I found this more stressful than the chemo) and the birds have enjoyed taking my hair to build nests as I scattered it on the garden. Ironically my springer spaniel died a year ago and this is what I did with his fur after a brush.

Hope everyone is enjoying the sun, it makes such a difference, top up the vitamin D and smile 🙂

x

[angeParticipant]

Hi SarahJane

I was wondering how you were getting on. Sorry to hear you couldn't have the stem cell transplant on time but it doesn't seem like you have to wait too long. I am still ok but things are progressing so I don't think I will have much longer to wait before starting treatment. Enjoy the sunshine! Take care Andrea xx

[rebeccaRParticipant]

Hi Sarah, So sorry to hear about the failed harvesting and having to lose your hair in the process. I am hoping to be harvested and stored for a rainy day) as my kidneys are not great for an SCT (understatement). I am only on dex/velcase so have had no hair loss and my hopsital couldn;t tell me if I would lose all my hair at harvesting or it jusst thinned – have you lost all hair now or just patches? I haven;t yet sorted a wig out as I didn't know. I feel rather cheated if I have to lose my hair just for harvesting when not following straight through with chemo but guess in the great scheme of things it's a small price to pay. What chemo drug did they use at the harvest melphalan or cyclasomething?
Take care, Rebecca

[tomParticipant]

Hi Sarah

And welcome back but am sorry your cells are hiding away from the Nurse 🙁
am sure its not nice to lose your hair but for me I felt it was a blessing no shaving no haircut for Months, but am sure you will all cope with it also.

Enjoy the long week end and hope all falls into place pretty sharply.

Love Tom Onwards and Upwards xx

[VickiParticipant]

Hi Sarah Jane,

Try not to worry this is what happened to Colin too. First harvest failed miserably, second one even worse! Third go he had to have plerixafor injections as well as gcsfs! He just got the 2 million! It is distressing as we didn't know it could fail until the first one bombed 🙁

By the way the same thing happened with Colin's hair , we thought he'd got away with it and then he phoned me at work to say it was coming out in clumps! He had some snazzy hats. Glad to hear your. Little girl is ok with it…..it must be hard for you to explain. However I reckons kids are more resilient than we adults.

Best of luck with the next harvest

Vicki and Colin x

[SarahJaneParticipant]

Thanks Ange, sorry things are progressing – but at least you are being closely monitored. xx

[SarahJaneParticipant]

rebeccaR

Harvesting for a rainy day sounds like a good idea, if I'd known I could of done that I would of. I was on Cyclophosphomide through my cycles – I was always told hair may stay/thin/fall out, but it stayed. I think the priming CYC is 4 times stronger which is why mine fell out over a few weeks, I also pulled/brushed it out, ironically I had a hair appointment to get it cropped the day it started to fall out – so cancelled that. It is now very fine – almost baby hair – with a few bald spots. A very kind friend cut it as short as she could – I was advised against shaving it as this can be quite sore. I wear scarves to work and go head-naked at home 🙂 Presume the bigger dose pre transplant will kill off all hair – again everyone is different – not sure of peoples experience on this?
xx

[SarahJaneParticipant]

Thanks Tom, will also save me lots of money on haircuts/shampoos etc 🙂
Although I am now spending money on scarves and hats – and suncream for my head – a new novelty
xx

[SarahJaneParticipant]

Thanks Vicki
I was warned it could fail – didn't realise it could fail twice! I now everything crossed for June. I know my CD34 was 3 and they could only do transplant when it was 8-10, so I was way off. Shame they can't do a test before you have to go through priming chemo/injections.

The funniest thing was it wasn't my head hair that I noticed falling out first, lets just say that I wont be needing a Brazilian (not that I've ever had one). This story always makes people laugh 🙂
xx

[rebeccaRParticipant]

Thanks for that will now get a wig – good luck fingers crossed for you.

[FOXLEYParticipant]

Hi Sarah,
I also had difficulty with the harvest and found it rather depressing as I thought it important to have the high dose chemo as soon as possible. They got there in the end though, after having the highly expensive booster injection (can't remember its name). Consultant said it was important to have a gap between the harvests in order to give my bone marrow a rest.
The down side of having a very dilute concentration of stem cells in my blood was that the transplant had to be given as 6 sachets over two days.
Chris

[scott9Participant]

Hi Sarah

What a great forum this is. Its so helpful to see what happens to others in the same position. I was at Kings yesterday for my harvest. This followed chemo, 6 GCSK injections plus another one given to me on Wednesday. My reading was only 4 though and as you say it needs to be about 10. I'm also now on a break and will see what the thoughts of the oncology team are next month.

It was such a let down as I had mentally prepared myself for it. Maybe it will happen or maybe not. This whole disease is just so totally random.

Keep fighting

Scott

[BADGERParticipant]

Hi SCOTT

Dont get down hearted it seems like they are not giving up on you and your body could probably do with a rest let us know how you are getting on keep in touch:-P
Love JO X

[BADGERParticipant]

hi Sarah

sorry they could not get enough of those little devils so better luck next time. gave up on my hair and had it all cut off so now its just wash and go my grandson said the other day when looking at photo's i like that one you had hair then gave me a big kiss so kids are cool:-P if they love you is doesnt matter
Love Jo x

[ozzyParticipant]

Hi Sarah & Scott
It is a good place for info isn't it? I too am in a delicate situation.I relapsed in Jan had Velcade & dex till April but suffered so much with pn that they stopped it and had one course of rev & dex.My pps went from 49 to 5 so on 7th May went into hospital for the chemo priming for second sct. Had 8 gcsf injections but on Sun 12th had to go to A & E as I had chest pains (which were from injections). On wed 15/5 went to hospital to harvest but my figure was only 5 and they needed 8 so came home after 4 hours with another gcfs injection. On thurs back again but still no joy not enough cells. I am now in no mans land, They mentioned Perixafor but I think they are quite expensive and I will have to see if I can have them.My netrofils were 0.5 in a& e and I now have a cough & cold.So lets see whats next in store. Ill let u know.
good health to all
Ozzy

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