[mandyphillips41Participant]

Hi All

Just had a long conversation with my consultant. My myeloma is very aggressive and even after cycles of chemotherapy it is always there waiting to pounce. We discussed my options today (he is always very honest & straight with me) basically I can have a double transplant – I have my own stem cells, then course of strong chemo, then a donor transplant BUT will the myeloma stay away long enough for my body to accept the donor, if not then what?? Or I don’t have a transplant and just come in each month for chemo and have thalidomide as maintenance.. At the end of the day he says I would probably have 2 years tops whichever choice I make but do I want quality of life or do I want to spend my time in a hospital bed fighting a battle that I cannot win?
I am as you can imagine a bit frustrated over this – Part of me is saying Fight, fight, fight you can do this! Then a voice keeps popping up saying “what if you can’t and you waste the rest of your life in a hospital bed”. I am only just 50 I still have so much life to live!!!
Has anyone else ever had a double transplant and survived to tell the story. Think it’s going to be a long night in this hospital bed, thankfully I go home tomorrow Having finished my 3rd cycle of chemo, think I will be asking the nurse for sleeping tablets. I can’t even imagine telling my family about this discussion – any tips? Thank you Mandy x

[CarolsymonsParticipant]

Mandy

I think the blogger, Jet, has been through this double transplant treatment with an allo for the second transplant and she is also younger. Although she is suffering some problems now with graft versus host disease from the allo, she seems to lead quite a full life. Whatever we choose in this battle is a gamble, but as you say at 50 years old maybe the gamble of a double transplant may pay off. Contact Jet or at least read her blog….may help with your decision making.

Carol

[davidbrParticipant]

Hi Mandy

I am so sorry to hear your terrible news. My thoughts are with you, bless you.

David

[rebeccaRParticipant]

Hi Mandy, when you think the nightmare can’t get worse it goes to a whole a new level, so absolutely gutted and sorry to hear your news and predicament. I think if you ring the helpline you may be able to get in touch with someone who has gone through a double transplant – its the peer support group/sponsor I believe. The myeloma beacon site also has many allo transplant patients/survivors stories. I know you had a very rough ride with your first SCT and there is a very long recovery period after an allo – can the hospital put you in touch with someone locally who has gone through it?. Presumably you have time to decide so I would use this time to slowly gather and digest information and perhaps have some counselling also – think this is the time to use this option. I am always taken aback when consultants put a time frame on things as it seems so definite – but it is only an opinion – my consultant refuses to talk personal prognosis as he says you never know what’s round the corner (he is a very kind man and I know now I don’t want to know as it diminishes hope – something we all need).
How the hell do you tell family this? no idea. Personally I would keep this to myself until I’d had time to get my head round it, digested it, and made my decision- this is your decision alone. I would never pass on the suggested “timeframe” to my nearest and dearest I think it’s too hard to live with and it’s one persons opinion – obviously your family are aware of the severity of the situation anyway.
Stay strong – don’t let it rob you of making the most of your time – this is at least one thing that you know is in your control.
Take care,

Rebecca

[finnParticipant]

Hi Mandy

I am so sorry to hear your news. I am also very surprised your consultant has put a time frame on your disease progression, especially as new drugs are developed all the time. Anyway, have you thought about going on maintenance first, give the drugs a chance to keep the myeloma away. This may take a long time as there are lots of drugs to try. Only when the drugs are failing you could still do the double transplant. Just something to think about, of course it it your decision and you will do what feels more comfortable to you. Best of luck

[piatkazParticipant]

Hi Mandy

I’ve had a tanderm transplant auto then a mini allo using my brothers cells in 2011 only got a year out of the allo but we are all different currently on rev and cyclo I was diagnosed in 2008 Jan and still here.I found the actual allo alot easier to get over as you dont have a high dose chemo.Like someone else mentioned there are a lot of treatments still out there and trials on others I cant see why your consultant would asy that stay positive.If you want to e-mail me with any questions there’s no problem piatkaz@aol.com
All the best Ian

[eveParticipant]

Hi Mandy

The news is not good,but from previous post you new this was going to be that way,Mandy you had no remission so you are high risk and it’s not great for people in this situation, you have good things on your side,you are young enough to have a back to back SCT,you have a family to keep you going,this is all good.

As for lying in a bed!!!! Waiting,that’s a no no,get in touch with Jet,she is also on UK Myeloma support on Facebook,she can give you information plus you can join a group that has under gone or planning to have the double,I can assure you Jet is doing so much with her life,she makes me tired just wondering were she finds the energy,Wendy is going for the double,that’s another lady who does not live to far away from you,she attends Manchester,and in between she has these lovely holidays,last one with husky dogs in the snow!!!!

Two years is just a number!!! Prove him wrong!!!! Eve

[keithmtParticipant]

Dear Mandy,

I’m sure we are all touched by your situation and your tough choices. Faced with the same I can’t even imagine what I’d do but I know I’d consider the views of the specialists and my family, as I’m sure you are.

My thoughts, hopes and prayers are with you.

Kind regards

Keith

[Author]

Posts