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Hi.  River.   Kevin here. AKA.  Vespa.    Male 68.   M. M for 2 + years and in Remission.    And I guess I am in Remission because I followed the treatment plan from my care team.  Hematologist!     It’s your call.  Your decision     If you can get the NHS treatment in the uk free that’s the best place.  But I thought we still had reciprocal health care in France with our European health cards.   ( do you have one )   Diagnosis is a terrible weight and shock      The treatments if they are the same are a combination of chemotherapy tablets and. Non chemotherapy injections   Called DVTD.   Usually 4 cycles. Over a 3 week period then rest for a week and start again to knock the   M. M down before stem cell harvest and then transplant.       It’s a tough journey but worth it.    I and a few others on the forum lead good lives. Active    A new normal but certainly better than the alternative.      Hope you make some good decisions.     Best wishes.   Kevin 

I got four cycles and then a month off for what they call a washout! My light chain dropped from 800 to 25 so I felt pretty good going to get the transplant in a couple of weeks

Hi kev, thx for your quick response, i don’t hear anyone who has survived longer, nor the suffering of bone pain with the treatment , I had no bone pain , after one chemo I’m now aware of my bone pain.   It’s all been a bit overwhelming, lack of understanding , after reading up on the meds I see the side effects. Blood thinner , was causing nose bleeds after one week , the weight loss I can’t afford , it’s all new treatments .a month in hospital will send me to a dark place. I don’t eat process foods , lactose intolerant. I turn from 60 to 80 yrs in one week. I have all the meds, why? ? I was under instruction to bring the chemo with me to the same hospital , why?? I couldn’t keep it cold so now is it ruined?? My problems go on , did u loose all your hair?

Hi River , having a MM diagnosis and not being  able to understand what is happening to you and the treatnent you are receiving must be a double blow .I have MM diagnosed Aug 22 had all the treatment as advised by my care team and Haematologist. Stem Cell Transplant April 23 . It's not an easy ride but like Vespa says much better that the alternative .I'm in remission now and enjoying my life . 

I'm a  69 lady ,  diagnosed 3 months into retirement and I live in Scotland. 

Wishing you all the best .Sue x 

Hi River. Welcome to the forum.

I was diagnosed in 2022 and have been in remission now for well over 2 years.

You say that "i don’t hear anyone who has survived longer". It just happens that a number of us active members of this forum were diagnosed within the last few years: plenty of people with myeloma live long, long lives with it. Wirh the latest treatments, for the first time oncologists are even starting to whisper the word "cure" (time will tell).

Of course your myeloma diagnosis was a shock - it is for most of us patients (some get prewarning with a preexisting condition of smouldering myeloma).

Your situation sounds rough. Is there no way in which you could take a translator with you to appointments?

On the bone pain, the chemo should with time reduce that and hopefully eliminate it.

On the weight loss, there are high calorie milkshakes that can help with that. You say that you don't eat processed foods: to get a huge calorie intake, I suggest lots of nuts and seeds in that case.

You also mention hair loss: that is likely when/if you have a stem cell transplant (some of us - like me - didn't have one).

You may feel alone but you are not. We are a community of myeloma patients and carers and we are all here to help you!

Wot were your symptoms with the treatment , I had 6 antibiotics on a line , a chemo , steroids and tablets , 8 in all , they gave me all the tablets except morphine , they know the treatment was causing me pain , hospital is 2 1/2hrs away

Thx sue, cakie , I’m planning marrying in oct ,I want to wait till after then , wot took u to the hospital, I had severe anemia, with in a week I was on chemo , I stopped eating and drinking and got very distressed , sick , shaky , pain , before this I was fine after the blood transfusions. To think I have to stay a month for stem cell is wot feels like impossible. I had no fresh air , no exercise , I was wasting away . For the moment I feel good , all back to normal

Thx for the quick reply ,the first dose of chemo caused the pain , after one week at home I was back to normal, eating , drinking . I have an amazing partner, but it wasn’t possible for him to travel 2 1/2 hrs to visit , phone calls only , I told him my diagnosis over the phone. I have felt alone and out my depth.  I didn’t have any appointments to take translator I was kept after blood transfusion . ( I felt great ) then came the diagnosis, and treatment , I thought I was dying .  I only wanted to be home with my partner , after a week home all is normal again . I did another blood test on my own to compare, I still wait for my file from the hospital, results from MRI snd 2 byops. Requested 2 weeks ago. .   

I am bald !    But lost all other body hair.    It does  get better   M.  M.  Treatments are developing all the time.    Other health issues need to be treated separately of course.     I have a weak hip  and lesions.   That to be honest is my worst pain       Sounds a bit classic.    Lost in translation. But I am sure the treatment in France is equal to that here in the. U. K.      Your body needs to get it self ready for a stem cell harvest.      This truly works.     Not easy but  you have to have help to deal with it      I drive myself to all my appointment.  But could not have done the stem cell harvest.   Transplant. And recovery without my wife and family       Kevin 

Hi again River.    The symptoms whilst going through treatment s.  Were.    Hip pain.   ( not bad)  Neuropathy        Nausea.  Diarrhea.      Fatigue.   Fatigue.  Fatigue       I slept most afternoons.