Hi, Newbie Diagnosis

Hi again Cbar70 and well done navigating across to this corner of the Community.

I am Mike and I help out around our various Blood Cancer groups. 

I don’t have Myeloma but for some context I was diagnosed way back in 1999 at 43 with a rare incurable but treatable type T-Cell Low-Grade Non Hodgkin’s Lymphoma……. eventually reaching Stage 4a in late 2013 when a second, also rare fast growing type of T-Cell High-Grade Non Hodgkin’s Lymphoma was presenting….. so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

There are a few active members in the group at the moment so let’s look for them to pick up on your post.

Do also click on the main ‘Myeloma Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 as this service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332

As you are in Edinburgh do check out your local Maggie's Centre as these folks are amazing and most centres do run monthly Heamatology Support Groups, the one I attend does have a few folks with Myeloma in it so worth checking.

Always around to help more or just to chat.

Hi I was diagnosed with mm last February I had severe back pain for about 12 weeks finally got a blood test and sent to hospital the bones in my back where badly fractured .I started on a trial of drugs then in July I had a stem cell transplant I am.now on  another round of trial drugs 

It is a shock when you get told what is wrong I have had tremendous support from the team I have ask as many questions so you can understand what you will go through .

Good luck with your treatment 

Thanks Kizi, just had my confirmation appt and now know what my treatment plan looks like which is planned to start next week. Because of my age and levels of fitness the outlook is a positive one, I know everyone is different but did you experience any side effects to treatment? 

Hi      jumping in on the back  of your  conversation,   to offer some   comments and help  i hope !      Kevin here,   i am now nearly 12 months post  Stem cell  transplant and doing really good  after   the     4 cycles    of treatment  called DVTB     a combo of home tablets   and injections,  and lots of blood tests,   once the MM  was down,  low then i went for Stem cell harvest        which was for me  interesting,  but a bit boring as you have to stay attached to the machine for  6-7 hours  each time,  it took   2   attempts to get enough   for  2 SCT        then    about 1 month later i got the  call for SCT  at Birmingham   QE 2    it was    painless,  i had a PICC  line attached to me,    and    then the  Melphalam    Chemo,  next day was the transplant,   and then aobut 10 days recovery in my isolation  room,   i asked to be transferred to Worcester   hospital    were my   treatment had take place,  so back under the care of the  SCT   team  that  knew me,        it  was tough recovery,    but every day you get a bit stronger,   i had     about 5  IV   going into me,  Antibiotics,   plasma      i had a severe   stomach bug,   but i was warned about this.        then home    and  about 2 months post SCT  i started the  next two cycles  of the treatment again,    and   blood test,   i am now in Remission and  the  new life is good,   walking,    walking the dog every morning,         you asked about side effects,       diarrhoea    and    naseau  are common,  but we are all different,          i then began the   series of   replacement    inoculations  as all the ones    we had  for Covid    etc are  gone,  the  hospital sent the list to my GP  practise and    they have been brilliant   even   replacing  the    rabies    injections.          the biggest side effect i have now  is  actually   Neuropathy,    but  once again this seems quite common.         the     journey  is worth the effort and you will need  support from Family and friends     and your partner   may also need some friend support,        my wife and i  made a pact to be 100%   honest with  each other  on our feelings,  not only me the patient,       i encouraged her to go to Australia to visit our sons and new grandchild   and i   was at home post stem cell to  look  after myself,   i say this to give you  that confidence that     you get past the bad days,  and the good ones are even more sweet beacuse of that,       i  wish you well,     not  saying its easy,   just saying it is worth it  !!     Kevin,  

Hi Cbar70 Hello Sue here . Not going to offer a long post as you will have had alot of information to process today .

Just wanted to wish you all the best with your treatment plan. My treatment centre is Aberdeen and they have all been great since I was diagnosed with MM in 2022 .Had all the standard treatment and a Stem Cell Transplant April 23 .

I'm 68 and now in remission. I'm so grateful for all the treatment and support I have had to get to this point .

Wishing you all the best 

Sue 

I am 69 because I was fit etc it went OK I did take reaction to the chemo force wee while but they have managed to sort that out 

My situation was similar to yours. Diagnosed in my fifties when I was or at least seemed very physically fit.

Kevin has explained the stem cell process. Before and after the stem cell transplant you will have something like:

Bortezomib = Velcade

Lenalidomide = Revlimid

If not Revlimid then probably Thalidomide.

Dexamethasone.

Some of these drugs have a brand name and a clinical name. It's a bit like buying Disprin as a brand name when the clinical name is aspirin.

As for side effects, they vary so much from oerson to person. Fatigue is the most common. Dexamethasone often causes sleeplessness. If the side effects get too unpleasant there is scope to switch from one medicine to anorher.

Cbar70, there is life with myeloma. For example, I was diagnosed in 2022. Today I have worked, done chores, looked at booking a holiday, ate out and gone to the gym. A pretty typical day. It is one hell of a shock to deal with, but it can be a new normal. The drugs are much better than they used to be and you can have a long and fulfilling life ahead. 

Hi I was given my 4 letter treatment code today but can’t remember exactly what it was but my Dr was extremely thorough and explained everything with clarity, first treatment is next Tues  but seemingly I need a dental check and flu jab before then to boost my immunity before it gets hammered 

I forgot to mention that you are also likely to get the bone strengthening drug Zometa. The dental check is typically done before the first infusion.

Hi. Chicken 2 is right.   I am on Zometa. Every 21 days.   It takes about 15 minutes for the infusion.   About 1 hour in the. Day case unit ( outpatient)   With  blood pressure checks.    Remember to get blood checks done week before or they may refuse to proceed.      At one time I was on first name terms with the phlebotomist