[VickiParticipant]

Nioola,

Just catching up on your posts. I hope your dads hospital appointment went well today. I'm sorry to hear that he is suffering the side effects. When Colin was on induction treatment he did suffer with dex…..moody, tearful and up all hours of the night!

Hope all goes well. Is your dad going to hVe an SCT at the end of his induction treatment (sorry I've missed it if you've already said :-))

Vicki and Colin x

[VickiParticipant]

Hi Jane

As supporter I agree with Jean, if I feel Colin is not telling me stuff then I either run mind riot, Internet over drive etc, of make his life a misery by asking what's up, what can I do, how can I help every 5 mintutes! LOL. So I reckon it's easier for all concerned if you share a bit. A problem shared is a problem halved 🙂

Jean, I hope franks' doing ok, and you are keeping your head above water. This mm will be beaten on all counts. DETERMINED 🙂

Vicki

[VickiParticipant]

Thanks very much for your good wishes Jacqui and Joanne,

Keep everything crossed for us ! Surely it's got to be third time lucky 🙂

Vicki and Colin x

[VickiParticipant]

Sorry chris

I read your post on your thread first!. Thanks for your good wishes. We live in Gloucestershire so Colin is administering his own plerixafor at home tonight at 10pm which I am a bit nervous about and then we travel to Bristol in the morning. If the harvest starts and they think he needs more plerixafor we then have to go back from Bristol to Gloucester, doing the same thing tomorrow night, so who knows. As I said on your thread Colin is feeling really rough, has slept loads today and has some pain in his back, in his knees and the joints and knuckles in his hands. Did you notice that?

Do you know it's sp heartening to have the support of all on this forum, and thanks to you and Lena as you both have your own adventure coming up shortly. If all goes well for colins harvest well all be going through it together!

Colins asleep and i feel very restless. I can't wait to get down to Bristol and in another way don't want to go if there disappointment ahead…..I must stop this negativity!, 🙂

All the best Nd hope you can enjoy your time before SCT.

Vicki and Colinx

[VickiParticipant]

Hi chris,

So pleased for you if that's the right word! Yes I can understand the range of emotions that you talk about! Your date is the same as colins, if the mega harvest you refer to works! We too panicked at colins first date and rushed about like mad things….we needn't have done that 🙂

Chris if you are still tuned in, Colin has felt really rough on this last lot of gcsf….felt sick, dizzy, very tired and he has had a small amount of pain in his spine/back, a bit at the top of his legs and knees, and in his hands/joints. Did you have that too?. Me being me just looking for some common signs that these damn injections are working. Plerixafor at 10pm. Just trying on the one hand to prepare for disappointment but on the other hand hoping against hope it'll work. Chris do I remember rightly that you had a score of 13 on first day….what did you have the next day, do you remember? And did they tell you have many cells you collected and whether they were going to give them all back or save some for the future just in case, not that you'll need them 🙂

Sorry to hog your thread but you've only recently been through this and we are off to Bristol tomorrow (wednesday). For you I guess it will be planning what to take, iPad, iPod, minim DVD player?, plenty of books and oh yes the wet wipes and plenty of jim jams 🙁

Hope all goes well for you, keep us posted if you can x

Vicki and Colin x

[VickiParticipant]

Tina

Colin has not got to SCT yet but we are waiting…..I suggest iPod, iPad, kindle, smal DVD player if you have it…if not and none of those any good just want to say the very very best of luck 🙂

Vicki and Colin x

[VickiParticipant]

Pat and Jo,

Your posts about the leggings made me laugh! They don't suit everyone do they…..the jury is out for me at the moment, but I do know I'd get the same honest answer Colin :-).

Sorry you've been feeling rough pat but glad to hear its getting a bit better. Re your post about the treatment getting those mm cells, I used to say to Colin that the poisons are the 'goodies' and the mm cells the 'baddies', they do battle and the good guys win :-)', not a great help when he was feeling really rubbish but it did help a bit and it made him laugh!

Onwards and upwards as Tom would say x

Vicki and Colin

[VickiParticipant]

Jane

Colin sleeps loads. That's fine, as Tom says healing!. Colin seems to have bursts of energy and he will just run out of steam. He does a bit and rests a bit. Seems like the right thing to do. I'm sure your husband enjoys doing the jobs, make the most of it, then when you are better you can return the favour 🙂

Vicki and Colin x

[VickiParticipant]

Hi Tom,

Yep injections started yesterday morning, each day with the funded drug of prelixafor on Tuesday night at 10pm. Down to Bristol Wednesday for the third and final go. I am absolutely dreading it….I know this drug is supposed to be 80percent successful but the two other disappointment s have been so hard, for both of us in different way :-).

A friend of my parents has mm too, diagnosed not long after Colin. He has just had gcsf alone, first go, had a score of 31; and harvested his cells for SCT first go. Great for them, really pleased but it just heightened my anxiety! Still I suppose what will be will be.

Making the most of reasonably well time;lovely meal Friday night with a bit too much wine :-). No wine last night, well off it ;-), fingers crossed for us. Let's hope those cells finally give way 🙂 and break the 2 million required!

Hope all well with you 🙂

Vicki and Colin x

[VickiParticipant]

Mari,

The good thing is that Stephen is home and they say that recovery is much better in your own bed and in familiar surroundings!. That's said though I remember eve posting that it's where the hard working starts!

I won't say keep your chin up, but thinking of you and would like to be as much support as possible if you find the time to post 🙂

Vicki and Colin x

[VickiParticipant]

Andy

Thats wonderful news. You should have more sunny holidays and then those pps will be dropping again. So glad to hear that despite the cough and cold etc on your return.

We are back on the treadmill. Gcsf injections started yesterday, prelixafor Tuesday night and then we are down to Bristol on Wednesday for another gomat harvesting. I'm dreading it! A friend of my parents has just had his first go at harvest, with gcsf alone and got a score of 31 and harvested all the cells required for SCT….so pleased for them but it made me feel even more dreadful about our third and final go. Apparently this prelixafor is 80 percent successful….let's hope so.

Still that's enough of us. Really hope you carry on in the direction you are going, and still basking in the warm of having returned from a lovely, sunny holiday 🙂

Vicki and Colin x

[VickiParticipant]

Mary

Just picked up in the thread. You and Charlie are having a really rough time! Gosh there has been some eventful situations for you both to say the least…..no more shed roofing for either of you 🙂

I can't offer any help with the blood clot but I can offer you my experience about stress in supporting my partner. There were days when I could cry and cry. They still exist now, but I am always trying to pick up a positive, either from everyday life or as Tom says, from this forum. I also try to read around the subject too to get as much understanding as I can. Also it's important to talk about how you are feeling to. Have you tried Macmillan nurses, they are great. And the nurses on this site are so so helpful, understanding and knowledgeable. I keep getting told to look after myself too,rest and eat well as if I get unwell Colin won't have my support :-(, sometimes easier said than done, but it is true.

If there are any questions I can help with please ask. It's a long road but as Tom would say shoulder down and charge at this damn condition. It will be beaten,

Take care

Vicki and Colin x

[VickiParticipant]

Hi Joanne

Sorry I'mjust catching up with posts too. I'm really sorry your dad had to go through that and you all are going through it with him! There is certainly no easy route through tis myeloma but we've all (watchers and sufferers) go to believe that it is do able, slim, Tom,david, debs, Helen, Ali's mum. I just go through the list every time I start to lose it a bit 🙂

Hope the treatment starts to work soon

Love and hugs

Vicki and Colin 🙂

[VickiParticipant]

Mari

Just wondering how things are going, and to say hi and hope all is well:-)

Vicki

[VickiParticipant]

Thanks very much Joanne

Then date for harvest is getting closer….injections start Saturday. :-). We are holding our breath and everything crossed. That's quite hard to do LOL 🙂

Vicki and Colin x

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