[foxy555Participant]

Hi Vicki and Colin

Oh, so sorry for you both, after preparing yourselves so thoroughly as well – you did make me laugh about your reaction to the cleaning chemicals, poor you!!! Thats all you needed!!! Hope you are feeling better.

It must have been so upsetting at the hospital, really do feel for you both!!! Excuse my ignorance – but what does gcsf relate to?? I must admit that until I knew Colin was going in, I have tried to ignore alot of things, did'nt really want to know what lay ahead.

Pete's visit to consultant on Tuesday was good, they gave him an ECG, X-rays and took further blood tests regarding the return of the back and chest pains and swollen legs, but could not find anything! They have said it will probably be November for SCT, so not long!! I must admit we have been so impressed with the treatment he has received at Musgrove Hospital so far.

Oh, update on insurance!!! After we provided them with a few more details, they have now decided just to pay my portion of the holiday back, still saying that Pete was undergoing treatment in December!!! This is not the case and so we will not give up without a fight, principal more than anything now!!!

Good luck Vicki and Colin for the week ahead, will be thinking of you both. Keep in touch and do try and enjoy the last day of Summer tomorrow!!! Only joking, rain over the week-end, but really hoping it will return.

Love

Ann and Pete

xx

[AliParticipant]

Hi Vicki and Colin

Im sorry that things didnt quite go to plan today – there was a lady when my Mum was there 2 weeks ago who had the same little blip. You say the nurses are not phased, and you are right, they have seen it all before and have tons of experience – its us that have not, and I think sometimes they forget thats its all new and scary for us, and disappointing when things dont quite go to plan. Like the others have said they will not stop! so please stay positive 🙂 and just prepare for a few more trips to the hospital this week.

I will be thinking of you

Love and a big hug from Ali x

[VickiParticipant]

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

[foxy555Participant]

Hi Vicki and Colin

Thinking of you both!! Take care and best wishes. Keep in touch.

Love Ann and Pete

xx

[eveParticipant]

Hi Vicky
Sorry things have not gone to plan,at least you know he might be able to try the other injections so do not get to down.
As for the Hickman Line,Slims went in on the 23 April and its still in!!!!! originally they said it will not come out until his platelets are over 75,and they are only 50 odd.Its just the flushing through every week that takes time.

Feed him up why you have the chance Love Eve

[tomParticipant]

Hi Vicki and Colin

Sorry its still not worked out and I do feel for you and Colin, we all want it to happen yesterday when we try and Mobilize the cells and not drag on longer 🙁

When I had my GCSF's I had two injections every morning is Colin having two injections or just the one??

Sending Love and Hugs for you both.

Love
Tom "Onwards and Upwards" xxx

[EvaParticipant]

Dear Vicki,
So sorry this has been a disappointment. I believe this is just a glich, and the stem cells will be in the bag soon.
Eva

[VickiParticipant]

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:-)

[tomParticipant]

Morning Vicki and Colin

I hope you both slept well? Four Injections per day sounds good enough.

Hope all goes well stay strong.

Love to you both

Tom "Onwards and Upwards" xxxx

[eveParticipant]

Hi Vicki

Slims is on the left,as he is often the passenger in the car,it did rub the line a lot when we did the 3 hr drive from London,It looked a bit red but not infected,the whole area goes red,plus hot with infection,Slim had a little pus on his,so took antibiotics just incase,if you catch it early,it saves a lot of problems,I kept spare dressings and gloves which I used in between the line needing flushing.If they are left dangling it,s awkward,you can have the main line put in a circle to make them shorter.:-/ :-S

Vicki the course of injections they give you,has a spare one in just incase you drop one,so I do not think it would have made any difference ,Colin just needs some thing else to get those pesky cells moving .Eve

[AliParticipant]

Hi Vicki

My Mum had the cyclophosphomide and the gcsf to mobilise, I was not aware this was not a standard sequence of events – hence the hairloss already. Her Hickman line is also on the right, she [b]does[/b] drive and rests one of those small chamois leather sponges that you would use to wipe your windscreen in between the seatbelt and her chest, she says its much more comfortable!

Love Alison x

[VickiParticipant]

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

[foxy555Participant]

Hi Vicki and Colin

How are you both!! Silly question I know, but I do hope that you are both bearing up.

I obviously cannot offer any advice, because we have'nt gone through it yet, but Vicki, you know we are thinking of you both!!!

Pete is really good at the moment,and so at times I do forget what lies ahead. I am dreading October/November when it all happens, but hopefully with the wonderful support on this site, it will help. Any idea when they will do Colin's SCT???

Take care the both of you.

Best wishes

Ann and Peter
x

[VickiParticipant]

Hi ann and peter,

Really glad that petered is feeling good at the moment. O I know what you mean, Colin is good at the moment too and you can almost get caught out and forget this mm thing!, until a temperature crops up, or time for tablets……

We have heard from the hospital and they are looking to try to get funding for the drug injection that boosts the gcsf injections, won't know anything until end of next week, or early the following one. We are going to hospital Thursday for the final checks, the only thing missing is the stem cells!. The 14th august is a non starter now so we will wait for revised dates. Every time he says he is tired I ask him, is it normal tired, or mm tired, as I always worry it is flaring up again.

Still this is a marathon not a sprint, keeping the Olympics theme!

Have a great weekend

Vicki and Colin x

[MariParticipant]

Dear Vicki and Colin,

I have just got back from our holiday and caught up with your news. I am so sorry that Colin's harvest has not gone to plan and even more so to hear that you are having trouble getting the plerixafor. As you know Steve had similar problems but did manage to get enough Stem cells in the end, 2.1 million, so just about! I think I have heard of people getting funding for plerixafor in your region but it is such a time consuming process and it puts the whole process back for, it must be so frustrating.

I am surprised that Colin had not had the cyclophosphamide induction, I also thought this was a standard treatment. If he has not already had this, then maybe this alone will be enough to mobilise the stem cells. It works by killing off some cells and therefore encourages the body to produce more new cells and the whole process is boosted by the growth hormone GCSF injections. Steve had the cycloprime and his hair did fall out. He has a very thick head of hair and his hair came out in clumps leaving him with a very fine covering of hair over most of his head. It's a bit disturbing seeing it all over the bed in the morning.

Good luck for all his Colin's future treatment,

Lots of love, mari xx

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