Hubs told now needs treatment

Hi Janien and a hello to your hubs . What a shock for you both to find yourself in this position and wondering what the year ahead will hold .

 I just wanted to say welcome to a very supportive group .The story you have just told is very similar to my own   5 years MGUS watch and wait then smoldering April 2022 and full blown asymptomatic August 2022  Started treatment Sept 2022 and Stem Cell Transplant April 2023 .

Not going  to fib its been a roller coaster of a  year but the support from the team at the hospital and family and friends has been wonderful. 

I wasn't able to work as had bad reactions  to some of the drugs and have a very face to face roll in Social Care and  was concerned about my suppressed immune system. Everyone's different and I know some folk have been able to continue with work so just with and see I guess  .

It took me a while to decide on the Stem Cell transplant because I think I was in denial about my illness  However I finally decided it was the best route and am so glad I did   Great result thank goodness and feeling very well ..

Take advice e from your team and keep your Specialist Nurse on speed dial ! 

Best of luck Sue 

Thanks so much for responding Sue. Hubs works local government he's hoping to negotiate increased work from home which is does 2/3 of the week anyway.  Its such a worry and i.have decided to try and take it week by week perhaps expecting the worst so anything better than that a positive

 We've been in some denial these last few years and now it's slapped us fully in the face.  Last 1/4 bloods showed no deterioration and we were buoyant. 

I'm expecting a difficult year but won't lose sight of the potential future of remission.  Its the cost of living, mortgage hikes etc. That are worrying me most alongside this

I've always suffered anxiety myself though. 

Hi Janien  and a second warm welcome to this corner of the Community although I am sorry to see you joining us and hear about your husbands diagnosis.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 with a very rare (also incurable) but treatable type of Non Hodgkin’s Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of living with an incurable blood cancer.m more so as I have had 2 Allo (donor) Stem Cell Transplants (SCT)

Although you have used the term Bone Marrow Transplant (many consultants still use this old term) the process is not done by taking Stem Cell from the peripheral blood (like giving blood) and there is no need to harvest directly from the Bone Marrow.

When he is at the position of going into SCT do check out our dedicated Stem cell transplant support group where you will connect with many people from different blood cancers who have navigated the SCT process.

As for working through all this….. it is very individual but based on my experiences with my SCTs you both need to be prepared for a 6 month’s recovery post SCT.

HI  Janien,   its Kevin here ( Vespa)    like Cakie,  sorry to hear this  news it is  a shock  to al connected to you,    Please take heart that there are some brilliant Meds being used right now for MM,   i am recently diagnosed  June,  on my 66 th Birthday and my retirement  day!   after 4 blood tests for skin issues,      so   fast track 2 weeks from GP  referral,  and  Bone marrow bipopsy    MRI  scan  X ray  the works   consultant confirmed it,   treatment started the same day!   Tablet  Steroids,     just  heads up  on hospital visits,  i am on Cycle 1  still,  i go 3 times a week,  Monday for Blood tests  then  Tuesday and Friday treatments,    NHS  Brilliant in Worcestershire,      so a long journey yet to come,  a lot for you both to come to terms with,  but Macmillan    info  books are brilliant,  other people will guide you to them,  but   a booklet " a life in Limbo"    gives you a lot of great help,     work wise  i am ( was self employed )   and still working,  also needed the cash flow  post covid,   but   once again other help is out there,   you will be classed as a " carer"  so may qualify for financial help,      i have learnt  that every MM  patient is quite Unique in how they react to  meds,  and    side effects,    my kitchen shelf looks like a boots pharmacy shelf        biggest things for me,     still being a very active  person  was no longer being able to the the things  i used to,         pain wise for me,  its lesion on my hip bones and lower back,     paracetomol  keeps most of that at bay,  as the meds   do their work inside by body.     working from Home,   sounds like a great plan for Hubbs    hope he gets that,         Be  prepared for Fatigue,  and some Insomnia,     i invested in a great  tilt and lift relaxing chair,   this helps me    duiring the day,   i still drive to my own appointments,  and feel fine  most days,   i recored the side effects   and    medications at  home,  my  Wife support ( 43 years married )     is incredible,   as of course it effects her, and you in many ways,         i hope this is not too long to read   for you,  but you are not alone,     some great support on this website,  if anything  you want to hear from me about,  please ask throough the forum,  i am only a patient    and  going through some of the same things   but just ahead of Hubbs,      The hard one for me  was not the MM  as such,   it was i can no longer attend my sons wedding  in Australia in October,       but next year i will go   Best wishes to you both and the family,    only trust  Macmillan and Bloodcancer.org   ignore Google    Kevin

Hi Janien,  sorry to hear your story. I was diagnosed in March with MM, shocked to say the least  just a routine blood test and wham,  didn't even hear anything the consultant told me, its like I wasn't in the room but anyway, I've had four cycles of chemo, no side effects at all apart from neuropathy in my feet which came 2 months after chemo stopped!  I've had my stem.cell harvest which was just like giving blood, no side effects to that either and I go in hospital next week for my stem cell transplant. I know my journey still has a long way to go but upto now the hospital staff along with my family have been brilliant.   You need to ask and get all the help you need. Macmillan have been brilliant . Everyone always asks how I am but my husband is going thru this too so please don't think you are alone.  I a. A 68 year old female by the way. Sending love and blessings to you.

Thanks for the sound advice.  I reached out to a Macmillan nurse this afternoon who sent me a leaflet and explained that was the unable to work bit usually and due to the risk of infection. 

Thanks Kevin and hope all goes well for you x thanks for the practical info re the first treatment stage that's lifted me a tad.  I feel very positive about the post SCT potential of a cleaned out vascular system and hoping he regains his youth! But it sure is scary the whole treatment process. At Basingstoke and Southampton for the SCT. You absolutely will get to Australia and be in a better position to enjoy time with your son more. X 

Thanks wishing you lots of love for your stem cell treatment. You're going to be in the safest place and the future looks bright ( the consultant told us they expect between 5 and 7 healthy years after treatment now). I keep on being told year on year treatments getting better.  Thanks so much for replying, it helps. 

Keep in touch with the forum,    always some body will respond,    Mike for me  has been an true Inspiration,       Thehighlander   Kevin