[suewiParticipant]

[i]started treatment on the intensive pathway clinical trial CTD group
I am very worried about the stem cell transplant if I did not have this would I still get the treatment. Please can anyone out there advise me what to do.
thanking you

susan[/i]

[EvaParticipant]

Hi Susan,
This is Eva. I think there are a number of things that might be concerning you.
If you wish to communicate with me, you can email evayouren@lineone.net and I am also then prepared to call you and we could chat.
I've had CDT and a transplant. I was very very afraid of having the transplant. I'm now four and a half years post diagnosis.
Ellen the nurse at Myeloma UK is also a good person to talk to.
I certainly don't mind giving you access to my experiences if it might help.
Eva

[eveParticipant]

Hi Susan

Sorry to hear you have Myeloma,but welcome to the club,it is very mind blowing when they tell you!!!,i cried when our own doctor told us,my thoughts were how do you control a cancer that goes all round the body in a blood supply.I had a lot to learn,and i have to say it takes awhile to take it all in.

My husband is on the Myeloma X1 trials ,he got CTD and for him it did not work the trials give you the chance to go on to Velcade that worked for him.if you choose not to go on the trials CTD is the treatment you would have.

You do not have to have a SCT, but thats a long way off,so i would just put that on the back burner and have your treatment,some people are not fit enough to have SCT,when the time comes you will see the experts who will tell you all about it,then you can decide.My husband made the decision to have a SCT that was last May,he is in full remission,but that must be your decision.Hope this helps Eve

[tomParticipant]

Hi Susan
A warm welcome to the site.
Am sure I can't advice you what to do, but I can tell you I was on CDT then onto a Successful SCT all in 2009, I am now in remission and drug free and still doing well , it has had it's moments over the year and a bit to be fair but it is a doable .

Where are you being treated ? As some on here might be at same hospital and can tell you more.

Good Luck on your road to remission.

Love Tom Onwards and Upwards xxx

[PeterJamesParticipant]

Hi Susan
Now you are here , welcome
I was diagnosed with MM at the end of may last year
My experience , along with a lot of the other good people on this site, is to get a much info as possible on MM
Be totally positive , you can overcome this & get on with your life , you can only look forward , not back as things were
Your life will change , but all not for the bad
I went on six cycles of CDT , without any probs, ditto extracting enough cells for two SCT's
You do not have to have an SCT , some people are not suitable candidates
But I was told in no uncertain terms that it would extend my life by a minimum of 18 months, possibly much more as as I had done so well on the CDT etc
Last thurs I went into the Christie Manchester to start my CDT
Thurs I had the strong dose of chemo, yes everyone but me smelt corn on the cob
Then on fri half of my stem cell harvest was put back in
All of these procedures are pain free , Hickman line is a few mins. Of discomfort
Now I'm waiting for my bloods to drop like a stone this week , which can make you be ill with infections etc, but then they pick up & soon after you will on your way home , in all probability totally knackered to start the slow build up of your strength
My view
If you can have it , get it done
All the best
Peter

[suewiParticipant]

[i]Hi Tom
Thank you for your reply, I will be going into Mancheter Royal if I do decide to have the SCT but reding about it scares me to death with all the side affects there will be. at the moment I am on my 3rd cycle of tratment, my doctor says my blood has come down a lot and would be arranging for me to see the doctor at MRI,were you on thalamide if so how did you cope with it they put my dose up to 4 per night, but could not handle it made my legs very weak, they were weak before but far worse so I am on 2 per night now legs still very strange, in fact I m walking with a tick at the moment. I will speak to you again.
thank you for taking the time to reply.

Susan[/i]

[suewiParticipant]

Hi Peter
Thank you for taking the time to reply, it just scares me thinking about the sct reding all the side affects, but I supose in the end it is worth it, it is just such a long recovry, and when you not use to be ill its a blow, will keep in contact with, and thank you once more

Susan

[LouiseAParticipant]

Hi Peter,

Glad to hear that you are doing well and coping with the treatment so far. Dad starts his injections to encourage stem cell growth on the 2nd Feb and will go to Leeds to have his stem cells harvested between 12-14th Feb. I think he shares your positive attitude and I really believe that has helped with his recovery so far. The trick for him has been not to look to far ahead but rather break it all down to little milestones.

Wishing you an uneventful recovery over the next week or two.

Best,

Louise

[CAZ1Participant]

Hi Susan

Welcome to the discussion group. Although I haven't been on here for a while I can vouch for the valuable support that being able to air concerns with others can bring when facing daunting situations like you are.
I have MM, had 4 cycles of CTD before my Stem Cell collection and transplant in April last year. Being 9 months 'down the line' so to speak I am now feeling much better than I have for a long time and realising that as I improve,that I had not been well for a long time before my initial diagnosis in September 2009.
My philosophy all along has been not to 'fight' the Myeloma, it uses too much energy. I 'dance' with it ,and have learnt to listen to my body, so if I feel tired,I rest.
The medical team that I have are superb, and you need to trust them. There is superb research that informs all the haematology teams on the treatment of MM and has enabled those of us treated to obtain ,hopefully, the best possible care.
The time in hospital is daunting if you are not used to being a patient, but support of family and friends helps enormously.
Listening to others who have been through it can help with forward planning, and be prepared to feel weak and need help on coming home and for the first few months, but it does improve. I had the added complication of a very slow to recover shattered leg from the year before to cope with as well, but can honestly say that with all that I feel better than I have for years.
Be brave, and if it helps, the whole thing is very much like having a baby, you forget about the process that you have been through in the fullness of time and then can make the most of your newly reborn self.

[adamsp41Participant]

Hello Susan and welcome to the discussion board… I was diagnosed with MM (asymptomatic) in Jul 2009 which became symptomatic in Jul 2010 resulting in acute kidney failure …like you…I was put on CTD for 5 cycles and had an SCT in Jan 2011…and have been in Stringent Complete Remission since…I too was told that basically I had no alternatives open to me but to have an SCT…what you will pick up from other MM'rs who have had SCT is that every single one of us copes with the whole process in totally different ways…some do not find it too difficult …but others struggle…some respond quickly…others more gradually….but stay positive and do not be afraid to ask anybody any questions (I write them down as I go along and bombard my consultant at our monthly meetings)….possibly the best advice I can give is to have a chat with your Clinical Nurse Specialist and discuss each stage of the process and tackle them one at a time…do not get to bogged down with something that is coming along in a few months…you can then focus on one thing at once…stay safe and good luck for the future..Phil Jan and Sam

[mhnevillParticipant]

Hi Susan

So sorry that you have been diagnosed with MM, but welcome to the Discussion Group, we aren't a bad lot! I find it very helpful.

I finished six rounds of CDT on October and responded very well and am currently in full remission. I just had two Thalidomide tablets each night. I had always decided not to go down the route of SCT and have had no pressure put on me. That is probably because of my age (nearly 68) and other health problems. There is a view, put forward quite strongly by one of the leading Consultants in America, that SCT isn't neccessarily the best route to go for. I wonder how old you are?

The good thing about this site is that you will get a variety of views.

All best wishes.

Mavis

[suewiParticipant]

Hi Mavis

thank you very for your reply, it has helped me, I am 64, don't think I will go through with the SCT, unless it is absoultly necessary, I am now on my 3rd cycle of teatment and feel fine. did the thalomode affect your legs my legs are very wobbly, I was on 2 tablets for 3 weeks, then they increased to 4, I couldn't cope with the 4 could hardly walk, my legs and feet were swollen, so they took it down to 2 again
Hope you continue to improve, and good luck
regards susan

[tomParticipant]

Hi Susan
Yes I was on Thal, I got through it pretty well to be honest, yes I went on sick for a year had all it done in 09 and am now Pleased to say drug free and still in remission, my ext visit will be 14 Feb,

Keep well and hope it all works well with little or no side effects
Love Tom Onwards and Upwards xxxx

[john62Participant]

Hi Susan
There is lots i want to say but i am not to good on computers..
I was diagnosed in March last year and went on a trial. I was at stage 111.
i was on the RCD trial of wich i had 5 months followed by SCT in December. up and about now. i have been looking at this site since June and like you was worried from the start. the comments i read in the build up to SCT really pulled me through over the last 6 months. after being through it i have finnaly got the corrage to talk on here i really owe a lot to all the peaple in the MM Club. I would love to thank everybody for there comments and advice and will try to comunicate with all. these people will pull you through. BELIEVE ME..

Love to all

John Cadwallader King of gwyned xxxxxxxxx

[VickiParticipant]

Hi Susan

My partner Colin was diagnosed in October 2011, culminating in a transplant in October, early nov 2012. We were scared from the start, read all things scary on the Internet and then found this site, a godsend. It has helped me as Colin's supporter, and Colin, although I'm the one that does all the posting!

It is very daunting, no doubt and like all the others we were v scared when it came to the sct. We knew we wanted it to happen but when it came to it…..we were scared. However once the high dose chemo had gone in we knew there was no going back. It's a very individual journey and there wre times when it wasn't easy but Colin came through it. We are now on the cusp of testing his bone marrow assessment done to see how it's gone 🙂

I'm telling you this because I hope it gives you courage and hope. Ask any questions you like and well help if we can

Good luck 🙂

Vicki and colinx

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