Hi Tom,
Welcome seems a funny word, but this forum is so helpful to you all as those with the condition and us supporters, who give some help where we can.
My partner Colin was diagnosed in 2011 and has been on the myeloma x1 trial, resulting in an SCT at the end of October early November 2012!. it's not the same treatment as you but he is recovering quite well so hopefully that will give you some hope?, he found the SCT arduous, but he suffered mainly from the ulcerated mouth and some pain due to a rheumatic condition. He got off lightish with the upset tummy! It did seem quite bleak with Colin was diagnosed but that's because we'd never heard of mm and felt quite phased by the treatment. That said again on the positive side, the medical teams are excellent, new treatments are coming on line all the time and this is an eminently treatable condition!
I would also recommend that if you have a partner, that she uses this site as I've found this a godsend, both for friends on here, and the myeloma specialist nurses!
Vicki
Firstly happy belated birthday to your 3 year old cells Tom……you do look young for your age :-), long long long may it continue!
Liz and kev sorry to hear of kev's little stay on hospital…..never good but hope the abs do the trick!
Keep the party going Tom and get that hair cut 🙂
Vicki and Colin x
Ah Ali, that's lovely. Nice photo of them both.
You resemble your mum :-). She looks like a real bundle of fun!
Nice to put a face to a name….
Colins line came out today, so free of all gadgets! Hooray. So relieved. Bloods doing good and we are told he can eat normal food now, even Stilton! However we are saving that pleasure just in case!
Hope all going well with you!
Vicki and Colin x
Hi ted,
Colin was told his pps were17 at the start of his diagnosis, but his light chains were 31000. (yes that's 31 thousand!). The consultants never really explained the difference or significance of each, but I think the light chains are significant due to floating about and affecting the kidneys……I could be wrong and not medical.
Which ever way it goes ted they got colins light chains down to 700 before his SCT and his pps down to zero, so if you do end up with treatment, got every confidence for you 🙂
Vicki and Colin x
Hello marija,
Welcome to the forum. My partner Colin was diagnosed in october 2011 and just had a transplant in October 2012, came home end of november 2012. This forum has been a huge help to blvd of us, either for me asking supporter questions, or on behalf of Colin as regards mm. I won't say I'm still not upset or worried but you sort of learn to deal with it. Also I've phoned the mm team nurse from this site a few times and they have been very helpful and friendly too.
Like you Colin was very fit and healthy prior to, lots of sport, active exercise etc. So like you a huge surprise. However we are here alongside you so please ask away, will support you all we can on your journey to remission 🙂
Vicki and Colin x
Hi all,
Thanks Helen, Mavis and Dai for your good wishes. I'm still on tenterhooks waiting for something untoward to happen. I reckon Ali has a web cam in our living room because she said she had visions of me sticking thermometer in colins ear when he is asleep……not far wrong ther! 🙂
Ali, Colin is still very tired but is capable of doing a little bit. He's eating well and drinking well too. The difficulty is keeping ahold of him when he feels good and not doing too much. Like today for example he has not had much of a sleep, and delivered some thank you letters to neighbours around our cul de sac as they've been so kind to both of us throughout. He does get very tired and still a bit emotional, and also this disbelief that he is at home! The doctors also seem pretty convinced that he has this polymyalgia, which is an inflamation if the muscles. They've given him steroids 🙁 to get this under control, which might be perking up his energy levels, but worrying me about hidden infection!. Anyway as long as the platelets are up he is having his line out tomorrow, so fingers crossed.
I'm back to work on tuesday which is a bit of a worry because I think the mental side of this will take as long to get over as the physical. Though friends and family are around I am nervous about leaving him…..still I must stop my pessimistic side!. Hope you and the family are doing well and mum continues in leaps and bounds!
I guess we'll have to close this thread soon as it's getting longer than war and peace :-).
Vicki and Colin x
Hi Peggy,
Good luck to you!, Colin as you might know had his SCT done just recently so it's fresh in my mind. He took in DVD player, kindle, iPad, some writing paper. I would say he used each of them only a small amount as tiredness and concentration wained, as did from time to time not feeling up to it!. There is a tv in the room and that stayed on a lot as background noise and company.
With regard to nightclothes, I usually took in three days worth at a time, and washed ironed and aired the clothes each day. Clean towel and flannel daily. Got some nice john sons baby shampoo for hair or lack of it!, and some sanex or e45 shower gels as non perfumed. Took on some mouthwash but that was pointless as they provided salt water washes and muguard.
Colin was not keen on the food but I was allowed to take in fruit pots or rice pudding as long as nothing came from the chiller cabinet and were 'long life' products. I took in some day clothes for him to dress in to too, but that only happened at the end when he felt better.
Hope this helps
Vicki and Colin x
Blimey Sarah and Henry,
What a rigmarole! I know what you mean about the care Sarah, you only want the best. Fortunately for us ours has been faultless, however Colin has had to rein me in a few times when I'm on the verge of trying to be doctor!. It's also very frustrating when it comes down to money….we had the same thing with the plerixafor!. I would recommending Maggie or Kate on the myeloma team as the team have experience of putting together business cases to help Funding issues. Apparently they work with the hospitals to try and make it happen as they have a national picture of what's going on, not just local like the hospital, which all adds to the weight of the case.
Hope Henry is feeling better soon, he is certainly working long hours so a reduction for a bit might help?
Vicki x
Hi all,
Good news with SCT nurse today! We are told the below results are very good, and his line can come out Monday, they did not have time to do it today;
Haemoglobin up to 12.7 (13 is the lower end of normal)
Platelets, up from 41 to 90 (about half way to normal)
Total White cell count 3.4 (3.6 is lower end of normal)
Neutrophils 1.9 (anything about 1 ok, but apparently normal range is between 1.8 to 7.5)
Sorry to bore with the figures but hey it has been a good day 🙂
Hooray hooray!
Vicki and oh yep Colin to my right who is asleep!
Hi Carol,
Just wanted to say hi, sorry you've had a relapse. I'm glad to read your new treatment regime is going well and you feel more positive. We will always be grateful for the words of support you gave Colin and I at the beginning of his treatment and hope we can support you in return! 🙂
Colin had his SCT a month ago, so far so good.
Carol keep your chin up :-), you can do it. You told me you were riding your horse out alone, I remember, you will do that again 🙂
Vicki and Colin x
Hi Tina,
May. Ot be much help, but question, have your mouth ulcers etc gone altogether yet? Could that be a cause? Colin was given muguard to do mouthwashes and the good old fashioned salt and water mouthwash a few times a day? Wonder if that might help. Also do you have a really dry mouth as that might also be a cause, I remebr the hospital giving Colin some cream to sort of rinse around his mouth to make it have more saliva?
Just me guessing but I hope it helps 🙂
Vicki
Dai,
If anyone can do it you can. Your poetic words, even in relation to c diff, should be a reward to get some success and cessation for your ongoing tummy trouble. You have had a lot to contend with. And yes I agree revlimid can't work if it's not in your system. They need to give you another go…..I'm for starting the Dai for revlimid and break from c diff campaign 🙂
Go Dai go, but not literally of course! 🙂
Vicki and Colin x
Hi all,
Whimps we are southern softies, too cold to go for a walk today :-), so we are saving it! Tom, I like the idea of us having an award, V C sounds good enough! Colin definitely deserves it, as I was only the small part player but by gosh that was hard enough! 🙂
Jill, I hope your mum Is continuing to do well on her treatment, at 83 she deserves so quiet life not the bang and crash of a transplant for sure!
Jacquie, I hope Jeffs treatment is going well, it's the same trial and combination that Colin had. All going in the right direction and they do like to keep going until the mm plateaus. In colins case his pp went to zero, and he was left with 750 light chains, because his body just couldn't cope with another cycle!. Best wishes for the next lot of results. I cried when they said colins pp had gone to zero! Good luck with your progress!
Liz, thank you for your good wishes, you are right!, it is so much better being at home and Colin says it does feel great to be at home!,
Andy, you are so right, Colin is behaving so far. I have said I will start cooking to the standard of hospital food if that will keep him at home 🙂 :-). Hope you are feeling ok….roll on those matching donors!
Vicki and Colin xx
Hi Emma & Ali,
Emma just a quick note to wish your mum well on her treatment, and so glad her kidneys have improved too. A huge bonus. This time last year colin had done one cycle and started the second. It felt like a massive mountain but it was surprising how we soon got into the swing…..not normal but a new normal!
Like Ali we didn't have a rave up at Christmas, but never do, but considering we were dreading it, it wasn't too bad and we managed to go out for a meal,totally un planned and that's how we've managed this, be more spontaneous and taking the opportunity to do things when Colin is well! Good luck.
Ali so glad your mums doing well, it's such an inspiration to us….any chance of you putting a picture of your mum on? It would be so nice to see her. She's been a real trouper and it will truly be a great Christmas for you all 🙂
We've got the stem cell nurse tomorrow. Colin is eating and drinking very well (no beer like chris) but lots of ribena and other soft drinks so quite happy with that. If they can get to bottom of the polymyalgia and get the pain management right then that's good.
Best to all
Vicki and Colin, who is asleep AGAIN, and I reckon it's cos he doesn't want to speak with me, ha ha!
Ann and Pete,
Always ask away……will help where we can. And yes we are still at home……it's great. Be prepared for Pete to sleep a lot and you to feel nervous at every twitch, sniff or flush of the face!
Chris."…….would be great to meet up with you both when we've got more energy in the new year!
Vicki & Colin x
