This topic contains 29 replies, has 15 voices, and was last updated by 
HelenR 11 years, 7 months ago.
Hello there
Sadly on Monday I received a diagnosis of Myeloma. Tomorrow I go back to the hospital to discuss treatment options and the next day it will be my 50th birthday. Somehow I don't feel like celebrating. I am trying to make sense of it all but the treatment sounds so scary and I feel so tired and mentally drained. I am in a good place at the UCL but I just wish I could do something to get out of this place.
Hiya there..
I am really sorry to hear of your diagnosis but please don't lose faith. My name is Kerry, it's my partner Melv that has Myeloma. He is 39 years old.
Myeloma seems so complicated doesn't it? So hard to get your head around but there is so many treatment options as I'm sure that you have found today.
How did your appointment go? I'm happy to discuss any of Melvin's treatment with you and his current situation. Don't approach this alone. I am sure that you have a fantastic support network but don't be a stranger on here.
Hoping that you are feeling more focused…
Love Kerry x x x
Hi Deborah
Welcome to a place where no one wants to be I remembered a post of yours some months ago you were smouldering? My husband Frank smouldered for 6 years and in June started six months of CDT and few weeks ago had a stem cell harvest. He's just waiting for a bed for the transplant. As Kerry said it is so hard to get your head round this illness but I hope your journey will be made easier with the support, friendship and advice that you will get from the lovely people here I hope your appointment goes well to tomorrow and Deborah try and put it out of your mind for the day of your 50th. I know it will be difficult but I do hope you have a nice birthday. ????
Take care
Love Jean x
Hi
I'm sorry that you got such a horrid 50th birthday present! I found this forum so helpful and hope that you will too. As Jean said try to enjoy your birthday and be hopeful for your future because the outlook for people with myeloma is getting better all the time.
Love Alison
Hi Deb,
I'm sorry you've had to join us but you will get lots of help and advice from the lovely people on here 🙂
It's very daunting when you receive the diagnosis of myeloma, I remember feeling exactly how you describe. I got diagnosed at 39 nearly 5 yrs ago, smouldered for a year then it became active so had Velcade/Dex for 8 cycles followed by my Stem Cell Transplant, followed by 18 months of Revlimid and have been in remission for 2yrs 3 months drug free 😀 There is hope!!
I hope your appointment goes well and you manage to enjoy your birthday.
Take care, love n hugs Lorraine xxx
Hi Deb,
Welcome to the site and I hope you find it as useful as I did….it got me through the first weeks and months after my diagnosis.
I would echo what Lorraine has said above. It is scary in those early days when even the terminology sounds scary! But it does all get easier. I smouldered for a year, then went onto the Myeloma XI trial where I had revlimid, velcade and then my transplant. I am now 18 months post transplant and doing very well on revlimid maintenance – most of the time I forget I even have myeloma!
I hope you can find some good times around your 50th 🙂
Love
Debs x
Hi Deb
A warm welcome to the "Scary" place ?? well its not that scary its a great place for advice/help and a place to near cuss with all the problems that are thrown at us due to the MM.
I wont ask you not to worry because you will, I will tell you we have loads of Members here that have gone through what you are now going through and didn't know what to do/say (i was one of them) and a little bit down the line they (not I he he) can tell you the names and symptoms of every thing we get have and need, and i can see you knowing as much as the rest of the good folk on here (and more than I 😛 )
I had all my work done in 2009 and am now still in remission and Drug Free as you will be soon.
Good Luck in your Journey to Remission.
Love Tom Onwards and Upwards xx
Ps Happy Birthday xxx
Hi deb
Sorry to hear of your diagnosis. My partner Colin was diagnosed in October 2011 and it was an absolute shock for both of us in different ways! Like other coiln went on the myeloma 11 trial and after about 7 or 8 cycles he went for a stem cell harvest for transplant….a couple of blips along the way but had the transplant in oct,nov 2012. Thankfully he is recovering well. I remember when Colin received the leaflets on treatment and it read like a horror story, however once we got going it sort of became easier…. I hope you have family and friends to support you and your direct family as that's so important.
It is possible to get through this, and this forum and the medical teams attached to it or a great source of help and reassurance. Ask any questions you like and we'll help where we can 🙂
Vicki and Colinx
By the way do try and celebrate your birthday…..this mm thing must not rule us, we rule it! 🙂
Hi Deb
I too sm sorry to have to welcome you to the MM Club! Sorry you have got it so young. I am nearly 68yrs!
As others have said, if there ever was a time to have MM, now is the best. There is so much expermentation going on, and, also so many new drugs available.
Very best wishes for the decisions being made for your treatment. Get fighting, we are here to support you.
Mavis
Hi debs, I'm 46 and will also be starting at UCL this month. Might bump into you at some point.
Lots of new treatment on the horizon and serious discussion that Myeloma will soon be a treatable chronic disease.
I am hopeful.
UCL is one of the world's best research led hospitals too with great Myeloma specialists.
Hope to see you around.
Tom
Thank you everyone for your kind replies. Yesterday I was back for my app at UCL I ended up having a bone biopsy, chest X-ray (due to rib pain) getting info about treatment options and a load of tablets,
The tablets I need to start today are Dexamethazone 20 x 2mg/day for 4 days, Ranitadine and Allopurinol. I am worried they will make me feel sick and my sister has arranged a surprise small birthday party tonight ( my husband told me as he was worried I would cope).
I have been invited to be part of the PADIMAC trial
Is any one else on this trial? I need to make a decision pretty quickly as they want to start treatment as soon as possible. I have to travel in from north herts to London on the train to kings cross and then walk down about 25 mins to the hospital. Will I be strong enough to do this? I could try to swap over to Addenbrooks in Cambridge who are running the same trial, but I have got to know the doctors at UCL and feel its the best place to be. There seems so much to think about at a time when any remains of intelligent thinking has flown out of the window!
My boss said I need to remain off sick for now but I love my job and feel I am losing myself.
I am grateful not to be doing this alone although I wish none us were having to go through this!
Thank you for understanding.
Deborah x
Thanks Tom UCL seems a great place if you do have to go anywhere. I shall look out for you No doubt it will become my second home soon
Deb
Hi Deborah,
Dex, that'll make you a bit hyper, increase your apetite and it stops me sleeping. Allopurinol is used to keep acid formation under control it didn't give me any side effects at all. Ranitadine I've never heard of I'm afraid.
I'm not on PADIMAC but I will be using the same treatment protocol called PAD which is Velcade, Adriamycin and Dex. It's one of the newer treatment protocols and is supposed to be good. Lots of people have been on it including many on here.
I can't advise on whether you should swap to Addenbrooks or not, although it has got a very good reputation particularly for kidney and urology issues. From a personal point of view I wouldn't be worried about a 15 minute walk from Kings X to UCL, but I'm not suffering much pain at the moment. You could also get the 73 bus which stops outside the station (on the other side) and takes you straight down Gower street. About a 5 minute journey.
Drop me a line if you need any more help.
p.s. I don't know what you do as a job and realise this is a tricky area for some, but your boss has no right to tell you that you shouldn't be working. Legally they are obliged to support you if you want to and feel well enough to carry on working during treatment.
I have already informed my line manager that I will be working as long as possible. At some point I wont be able to, but that's my decision informed by advice from my specialist. If you have an HR department they should be able to help.
Hello Deb
welcome and so sorry you have had to join us what a 50th birthday Shock I dont think any of us really get over the shock UCL Is marvellous i am there every three months attenting my local hospital lister in stevenage inbetween UCH is the best as Mathias said 15 mins walk from Kings cross or 10 mins from Euston or the 73 bus which runs every few mins good[b][/b][i][/i][u][/u] luck with your treatment i have had MM for 4 years so live does go on 🙂
Love Jo x
Hello Deborah,
It is all a bit mind blowing at the start, isn't it? So much information to take in. My husband Phil was diagnosed with MM in May at the age of 43 and he was treated on the PADIMAC trial at St Bart's in London. He had six cycles of dex-dox-velcade and last night he returned home after 24 days in hospital for his stem cell transplant. The PADIMAC trial is looking to see if the SCT (stem cell transplant) can be delayed by the use of Velcade as a first line treatment, this obviously didn't happen for Phil but his paraproteins did drop from 32 to 5. We know of two people on the trial though who did reach a complete response (CR) from the treatment and have been able to delay the SCT so it is possible.
Your concern about travel to and from the hospital is something we worried about as well. When Phil was diagnosed he had quite extensive bone damage and was finding it hard to walk due to lower back pain. Near the start of his treatment Phil had to have both femurs nailed due to the lytic lesions on both of his hips. He was on crutches for a month and during that time he was able to use the NHS patient transport but once he was off the crutches he had to make his own way to the hospital again. This was often very tiring for him as the lytic lesions on his ribs and shoulder have not been fixed yet but he managed it, Phil's journey was a twenty minute walk to the tube station, a 30 minute tube journey and then a five minute walk at the other end to the hospital. Each person is different but Phil never had a problem with the journey due to side effects of the treatment, all of Phil's problems with the journey related to the bone damage.
One side effect that Phil has from the treatment is peripheral neuropathy in his feet from the Velcade. His last two doses of Velcade were reduced due to the neuropathy but the numb and tingling/burning sensation in his feet has not gone away yet. Not everyone has this side effect but if you do notice any tingling or pin and needles type sensations please tell your consultant as they can reduce the dose so it does not get any worse and hopefully no permanent nerve damage is done.
If you have any other questions about PADIMAC just let us know and we will try to answer them if we can.
Enjoy the surprise (?!!) birthday party tonight.
Megan
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