[jmsmythParticipant]

Hi all

Has anyone got any info for me. Frank still waiting for a bed for SCT. he said today that he doesn't think that he will go for it as when they took the cells – 7"5 million – his Pp Levels was at 2. They will be putting cells back that have a PP level of 2 and that means he won't go into remission so it's not worth it. He rekons that is why he has not got a bed yet as the consultant probably won't want to do it either. Has anyone got info for me. At
Jean x

[meganjaneParticipant]

Hi Jean and Frank,

I had the same concern before Phil's transplant so I called the infoline and although I didn't completely understand Maggie explained that the stem cells are treated so there is almost no Myeloma left and with the strong chemo before the transplant when the cells are returned they start fresh and new. Phil's paraprotein was 5 at the time of the harvest at the start of December and they have now dropped to 4. I have asked and they can continue to drop up to a year after the transplant. Everyone is different but the transplant helps get a deeper and longer remission.

It is very unfortunate that Frank still has not got a bed, I hope it can be resolved soon so you can both move forward with Frank's treatment.

Please call the infoline on Monday and I am sure Maggie or Ellen can explain it better than I have! 🙂

Megan

[jmsmythParticipant]

Hi Megan thank you for that. It has eased me a bit. I will definitely get unto Maggie / ellen. I am so worried – frank seems to be so laid back about the whole thing. I'm not sure what is going on his mind. It's because of the long wait – he has had time to think and he's getting info from a registrar instead of from the boss (consultant).

I hope Phil is doing well thanks again
😀 jean x

[meganjaneParticipant]

Hi Jean,

The long wait must make it more difficult, it gives you too much time to think!! I know I was the same, Phil was diagnosed in May last year and it was such a whirlwind – diagnosis and then straight into treatment and then treatment stopped to have two operations to pin both femurs and then back into treatment and then suddenly the treatment was done and we felt like we were in limbo while waiting for the stem cell harvest. It had all been so full on and then suddenly nothing for six weeks. This was when I called the Infoline quite a few times with questions as I think it was the first chance I had to actual sit down and think instead of rushing around.

Phil is doing well thanks, it is just over a month since he came home after his transplant and although he is still very tired,he is on the mend and getting stronger everyday. He still needs a kyphoplasty operation to fix his collapsed verterbrae and hopefully that will help improve his back pain once it is done, we don't think he is even on the waiting list for it though so it may not be for a while yet!

I hope Frank gets some news soon about a bed. Is there anyone you can call at the hospital to try and get a time scale?

Megan

[AliParticipant]

Hi Jean and Frank

I dont seem to contribute to this site much nowadays but I do check in regularly – Congrats on your new arrival:-)

Im sorry to hear you are still waiting for a bed, I agree with Megan – is there anyone you can chase at the hospital?

I hope this helps Frank (and you Jean)……My Mum waited nearly 4 months from end of frontline treatment to SCT. Delay, had to order Hickman line?, then waiting for bed. Her PPs were <2. Her SCT was early Aug 2012. We never asked about PPs afterwards (probably too engrossed with bloodcounts, platelets and neutrophils). We just assumed that after SCT the PPs would be totally wiped out?. At Januarys consult Mum asked about PP levels and was told Novembers result was 3. We were devastated – how could they have gone up? Anyway, I worried about it for a week and then phoned the specialist nurse. She said The Melphalan carries on working for 8 months or so. Not to get too fixated on the actual PP level but the stability of the level. Not everyone reaches the magic zero. So, I dared to ask about the previous weeks results and was told the PPs were too small to quantify. So hoorah, she was right. Mums went up (probably the wait for SCT) but then slowly went down after SCT.

I do hope you get a date soon:-)

Love Ali xx

[tomParticipant]

Hi Jean and Frank

Hey dont worry too much about Pp Levels mine were still present (cant remember what level? ) but Mine went ahead and yes i had a Long wait from harvest to SCT due to Dr missing me off the list 🙁 now that was for me scary, no date and not haveing anytreatment? I wanted them to give me smartie's in a pill box just so I thought i was keeping the MM at bay (am a silly burger lol) but here I am still in remission 😎 and am sure Frank will be same.

Now what will Frank be thinking???? If like I was during the treatment and Waits (the wait is far worse than treatment) he will be scared and worried that you are worrying, I know i did for my Young Bride, and that am afraid to say is something you just cant stop, I/we dont have brakes for the worry head am sorry to say. (but cuddles helped 😎 )

Lots of love
Tom Onwards and Upwards xxxx

[jmsmythParticipant]

Thank you all for your replies. Ali your message cut off and didn't get what your mums levels were. I would be interested in kmowing what they were. Hope you mum is doing well
Love Jean x

[meganjaneParticipant]

Hi Jean and Frank,

I just thought I would add a bit more encouragement for Frank. Phil and I met with the Prof today at clinic and he is very pleased with Phil's progress. Phil has now reached the VGPR stage which stands for very good partial response, this means there has been a 90% drop in the pp levels since diagnosis, Phil's pp level is now at 3. I asked how long after the transplant the pp levels continue to drop and the Prof said it can be up to 18 months so if Frank is starting at 2 then he will have lots of time to get to the magic 0 🙂

I hope you get some news about a bed soon.

Megan

[jmsmythParticipant]

Thanks for that Megan and good news for Phil. It's always on my mind and just wish we could get it started. We go on Thursday week to hospital and this time I am going to ask to see consultant – even if we have tow wait, I have such a sting feeling that she is deliberately avoiding us – hope I'm wrong but will see. I also emailed Ellen so waiting for a reply from her. I want so much info so that when we see consultant I will be a bit knowledgeable.

Megan thanks again and best wishes to you both

Love Jean xx

[jmsmythParticipant]

Vikki that information is very helpful. I didn't know that about the cleansing. Thanks. Hope Colin goes from strength to strength

Love jean x

[VickiParticipant]

Hi jean and frank,

Try not to think of the pps! The consultant never mentioned what Colin's was before we went for sct so we had no idea! Megan is right about the cleansing, we couldn't get our heads around the fact that they were putting old infected cells back in. When we saw the stem cells nurse she explained to us. Firstly there is the induction treatment that starts hitting it, then the big dose of chemo. In addition though the mm cells are stored at something like minus 180 degrees and apparently they don't like low temperatures so that kills them off as well. So if there is any residue when it does back in the high dose chemo should battle that down.

I hope that helps…..the waiting is definitely the worst, if felt like an age when we were waiting, and after the failed attempts at harvest! It doesn't get any better though, Colin had his bmb on 24th jan and our appointment is 20th feb. to get the results. It's all I can do not to ring up. I was cared before and scared after now:-/ . I do wonder how its possible to get back to some normal.

However I do hope you get a bed soon to stop the negative doubts creeping in, I know we did! However I still believe this sct is a lifeline. Chins up, take care

Vicki and Colin x

[AliParticipant]

Hi Jean

I cant seem to post on this thread properly. I have sent you a private message.

Love Ali xx

[jmsmythParticipant]

Hi Ali I have PM'd you. Thanks
Love jean xx

[FOXLEYParticipant]

Hi Jean,
Have you thought of asking whether there is a specialist nurse who actually does all the paperwork for booking you in? I was treated at The Christie (specialist cancer hospital in Manchester) and directly I was referred there by the haematologist from my normal hospital for CDT I was introduced to the nurse who coordinated everything from harvest to Hickman line to the bed being ready. I hardly ever saw the consultant but I know that the nurse was in frequent contact with him. The point is that the nurse was always available either by email or phone for keeping me up to the minute on bed availability etc etc. whereas the consultant or registrar is harder to get hold of and they don't actually do the admin.
Likewise after the transplant I have now got all the contact details of a specialist Myeloma nurse who I have phoned several times in the first weeks after transplant for advice and reassurance.
I do hope it gets sorted soon. I know the waiting is horrible. I had difficulty with the harvest so it took a month longer than normal and all the time I was imagining my PP going up.
Chris

[FOXLEYParticipant]

Hi Megan,
I would be very interested to know how the kyphoplasty saga proceeds. I have two collapsed vertebrae that give me back pain and after some difficulty got referred to a specialist in that area (Manchester Royal Infirmary). The registrar I saw said that the outcomes of the procedure were often unsatisfactory. Furthermore he did not seem to think that I was in enough pain. All in all I got the distinct impression that they did not deal with many MM patients and that osteoporosis was more their speciality. However about 2 months after that first consultation they are going to give me an MRI scan of the affected vertebrae.
Chris

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