This topic contains 13 replies, has 10 voices, and was last updated by 
bajabell 10 years ago.
Hello to All under 50’s ……
My name is Richard Bell age 54. I just wanted to give some good news and hope to any younger MM patients ……. a very brief description below.
I was diagnosed 10 years ago this coming September at the age of 44 and like most people had not heard of MM. I had a tumor in my spine which after several months of pain eventually cut off the feeling to my legs and I was no longer able to walk. After an MRI I was quickly diagnosed with MM and had immediate radiation treatment on my spine to reduce the tumor and relive the pressure on my spinal cord.
This progressed to six months of Chemo/VAD and an ALLOGENEIC TRANSPLANT, the donor being my sister who was a lucky six for six match for my bone marrow. I had the transplant in the spring of 2005 so have a year to go until my real 10th anniversary !!!
I suffered only minor rejection issues ( Graft verses Host ), long term being mainly the loss of tear function in my eyes which has left me with dry eyes.
I realize that this treatment is not always available and I was lucky all the way from an early diagnosis with a tumor ( which in some way saved my kidneys ) to a sister who was a good match ……. BUT the reason for this post is to say that I have seen great progress over the last 10 years and that if you are young as I was PLEASE have hope and courage that there are good treatments out there which are prolonging life to a much greater degree than even 10 years ago.
Good luck to all under 50’s …… the one thing we have is our relative young age with which we can fight the good fight. If I had not been 44 and in fairly good shape I would not have been eligible for an Allogeneic Transplant so being young was not such a bad thing after all.
All the best to you all……..
Richard Bell
Hello Richard
Firstly Congratulations on your “nearly” 10 years. I was also diagnosed at 44 nearly 4years ago, and had a Stem Cell transplant 3 years ago. Unfortunately my Brother wasn’t a match. Everything was progressing well until earlier this year when I had a relapse. After Velcade treatment I am now back in remission and my levels are the lowest they have been so fingers crossed for a good few years yet!!
I feel better for not being on any drugs and have been one of the lucky ones as haven’t really suffered any side effects. I know i will need another transplant in the future but i’m hoping it will be the distant future.
All the best for the next 10 years
Julie
Hi there,
My name is Pepita and was diagnosed in Dec 2013 aged 37. I have had a successful chemo treatment on Revlimid and am now (yesterday actually!) Started the process to prepare for harvesting stem cells for my impending transplant. I have to admit, I am terrified!! Central line being “installed” tomorrow due to naf veins!
After my first ever treatment of IV chemo (Cyclophosphamide) I’m not feeling too well so now know (roughly!) what I’ll be facing in a few weeks.
I am pleased that you are looking forward to your 10 year anniversary and hope that i will be as successful. In my case, there has been the discussion of a bone marrow transplant due to my age, but I’ll get through this bit first!!!
Do you have any advice at all for comfort duting the process?
Firstly ….. Julie, thank you for your good wishes ….. the same back to you, good luck and yes it is good to be off drugs.
Hi Pepita ….. Please do not be too “terrified” , it really is not that bad either for the Central Line or your transplant. I absolutely realize it is all new and distressing but be assured that you have youth on your side and you will get through it.
If you have not already, then join a support group if there is one near. They are a great wealth of knowledge from other people who have gone through all this many times over. it is good to meet face to face and ask questions.
Also be bold in asking your doctors and nurses questions and getting reassurance from them as to the details of the procedures.
Good luck ….. Keep your spirit’s high, it is not easy any of this but having a positive attitude is half the battle.
Take care
Richard
Hi Pepita
I also had to have a central line due to naf veins, it wasn’t pleasant but is a whole lot easier than having needles stuck into you. The harvesting part is easy, you just sit/lie back and relax for a few hours whilst the machine does all the work!
I was terrified about my Stem Cell transplant which i had Sept 2011, it wasn’t easy but i came through it and so will you. We have age on our side and like Richard has said having a positive attitude is definately half the battle.
I think I have spent the last 3 years or so worrying more about what my family are feeling rather than how I am!
Listen to your body, if you need to rest then rest – you’ve got a tiring journey ahead.
Good luck for today
Julie
Richard, Thankyou so much for this encouraging post.
I was 49 when I was diagnosed with MM in May 2011 and had CTD and a STC in February 2012.
I haven’t looked back since and have been drug-free for about 18 months.
Fortunately I was fit and healthy at point of diagnosis and have been positive and upbeat since day one. It definitely helps.
I take care with my diet and walk as much as I can to keep active. Basically, my life is very good at the moment and hopefully I’ll have a long remission like yourself.
I often try to post jolly, positive news on this site, but I don’t think most folk believe how well I feel and I tend not to get much of a response!
It’s so important for the newbies on here to realize that MM isn’t all doom and gloom and that it’s a very very treatable disease. Look and think ahead many years and don’t feel that your life has gone down the plughole.
Here’s to the next decade!!!
Richard,
That’s great news. A real uplifting story that helps keep others like me going and gives them hope. I was diagnosed at 41 last August, recently had my Auto (Feb) and I’m due my tandem RIC Allo at the beginning of June. Luckily I have a fully matched unrelated donor and I’m hoping everything works out and I don’t get too much GvHD, but enough to keep the MM at bay. Ten years in remission is superb and I would take that now if it could be offered to me!
Keep up the good fight!
Regards
Scott
Hi,
hope you dont mind me asking Richard, how come you havent used your own stem cells ? My husband has a brother not tested at present. And we got the impression it was better to use your own stem cells……. We have done so much reading that we still really dont understand which is the right direction we should be going in. We have good specialists at qe but my husband only 45 still cant understand why stem cells are harvested assuming they still contain traces of myeloma and then are put back in ???? Surely we are just continuing the cycle or am i way off here?? We thought using a sibling if a match could pose bigger risks????
maybe this depends on the myeloma itself?
my husband due to see a specialist next week with a view to going in soon for his sct……. I think hes hoping he can stall and delay this until he really needs it done but the STATISTICS say otherwise so quiet confused this end x
Hi Majic30.
Firstly my advice is to talk with your Doctor / Specialist and ask these questions to get the professional side of things.
The basic Transplant options are:
A) Autologous stem cell transplants (autografts) refer to stem cells that are collected from an individual and given back to that same individual. Most stem cell transplants in myeloma are autologous transplants.
B) Allogeneic stem cell transplants (allografts) refer to stem cells that are taken from one person and given to another. Currently, these types of transplant are performed much less frequently in myeloma due to the high rick of mortality.
OK…… So hear is my personal take on my experience. I was heading for an AUTOLOGOUS transplant and after 6 months of chemo, my levels had been brought down to a good low level.
( This is generally the process, when they think they have achieved the best levels, they harvest your own cells, clean them up and then give them back to you. With this procedure there are NO rejection issues as you are having your own cells put back into your body)
As I was relatively young my team asked if I had any siblings and at that time I was told in detail about the HIGH RISKS of having an ALLOGENIC transplant. A large part of this type of transplant is the MATCH / QUALITY of the donor. A brother or sister with high numbers matching are pretty much always the best ( numbers are matched from 1 to 6, so a 6 for 6 match being the best ). A NON FAMILY match can also work but the risk of rejection is higher.
REJECTION is called GVHD or “Graft verses Host Disease” ….. so Graft being the donor and host being you …… when your cells fight off the donor cells this is called GVHD. I am now going to be very blunt !!! ….. IT CAN KILL YOU EARLY IF THE TRANSPLANT DOSE NOT TAKE.
The way I have always described it to people in general is that …. a computer has a VIRUS and you need to wipe the hard dick clean ( Chemotherapy / Radiation ), then re-boot the system with new software ( A transplant ). With an Auto you have less risk, but there might be some virus left in the computer. With an Allo you have a larger risk BUT the chance of a clean computer is much higher.
Back to my experience. I was VERY LUCKY I had 3 siblings who were all tested and one of my sisters turned out to be a six by six match for my bone marrow. This is about as good as it gets other than an identical twin !. Having been told of all the risks involved it was then my decision to have the ALLOGENIC TRANSPLANT. I looked at it as a risk assessment exercise, if I could take one big hit of risk up front and survive then then the prospect of a good recovery combined with a drug free quality of life was worth the HIGH RISK. I was told in my case that the MORTALITY RATE was likely to be around 38%.
My sister gave me two bags of marrow from two sessions ….. she had to take a drug for seven days which flushed her bone marrow into her blood system. She then had to sit still on a machine similar to a dialysis where she had a line in each arm taking her blood into the machine where the marrow was separated out and her blood was then returned into the other arm. She did this twice for approximately six hours over two days to produce the two bags.
Just before the transplant I had TBI which is TOTAL BODY IRRADIATION ….. this is where you are radiated over a period of four days. They pack your body with protection in the most venerable areas such as your head and major organs, but the idea is to blast the whole / total body with one last blitz of radiation. As I mentioned above effectively they are trying to wipe you clean without destroying your system …… in basic terms cleaning your body to the highest degree without actually killing you in the process !!!
I spent six weeks in isolation in hospital which was not much fun. The reason for the isolation is that with this treatment your IMMUNE SYSTEM is pretty much wiped out so any small infection could kill you, hence the initial high risk.
PLEASE NOTE THAT THIS TYPE OF TREATMENT IS NOT FOR EVERYBODY. YOU SHOULD BE YOUNG, REASONABLY FIT AND HAVE A GOOD MATCHED DONOR.
I was VERY weak after being in bed for six weeks and had went on to have some issues in the following months BUT after about a year on ANTI REJECTION DRUGS I was able to come off them and slowly recover to good health. The procedure kills off your salivary gland in your mouth which makes eating VERY taxing. In my case salt was also an issue and I ended up making my own chicken and veg soup which I survived on for well over a year along with porridge for breakfast.
I came through with only some permanent damage to my EYES in terms of GVHD. I have loss of tear formation and what is left produces a thick white sticky mucus. I treat my eyes am and pm with a special eye drop which dissolves the stickiness and then all through the day top this up with and eye lubricant. It has been VERY easy to get used to this and live with it, small price to pay !!!
Take a look at the link below which has some good information on transplant:
LASTLY ….. DO NOT BE AFRAID TO ASK YOUR DOCTORS QUESTIONS AND IF YOU DO NOT UNDERSTAND ANYTHING FIRST TIME AROUND …… ASK AGAIN AND AGAIN UNTIL YOU GET IT. If they are impatient and don’t give you the answers GO TO ANOTHER DOCTOR AND GET A SECOND OPINION ?????
Good luck to all and don’t let the BIG C grind you down
Take care,
Richard
Hi Richard,
Thanks for posting your positive story on here, it is great to hear the good news stories… how are your level now?
I live in Cape Town, South Africa and was diagnosed this year in April (43yrs) and have had radiation to relieve pressure on the tumour that had encased my scaitic nerve going down to my right leg, and chemo for 6 cycles. My levels have not come down enough yet to have an stem cell transplant and so i have just been put onto another two months of chemo with Velcade in the hope that it will reduce my numbers enough to justify the stem cell transplant. Unfortunately or fotunately i’m not sure 🙂 my only sister is not a match so i’ll be having the Autologous transplant if and when i get there.
I was just wondering how people handled work during this phase of their treatement? I am (was) in a very demanding industry and have had to stop working while i go through this treament, but was wondering how others have handled it… is it usual that one has to stop working, becuase it is obvioulsy quite a financial strain with on a family when soemthing like this happens?
Cheers
Grant
Hi, I am an oldie ( 76 ) so read this purely out of interest, and hope I am not speaking out of turn. Richard, your contribution I found cleared up a lot of terms etc. I’ve really never understood or grasped, and has opened my eyes to just what decisions and risks young SCT patients must go through. In a way, when at my age anything can come along and knock me of my perch, it is easy to adopt a philosophical attitude, do what I am told, fight back against the Myeloma as best I can, and get on with what is left of my life. I can’t imagine going through this and more with a family and young children. Believe me when I say – and I think I speak for most oldies – our thoughts and best wishes are always with you in your battle against this horrible disease. Jeff
Richard
Nice to hear about your experience. My husband is in Christie in Manchester at mo. Just has autologous last week. Not good at mo but expected. He’s 47 now. His siblings have had blood tests and just waiting results do we will know whether they are match for allogeneic transplant. Tandem transplant I believe? Such a massive decision to take if they are a match.
Good luck all
Leza Starkey.
my husband was recently diagnosed with mm found the same way yours was. He goes for sct next month. Did you ever regain the ability to walk or use your legs. He has been in a wheelchair since he was diagnosed.
Thank you all for your response’s
1) Oct 3rd GRANT ….. In answer to ” how are my levels ” …… this is not easy form me to answer !!! ….. I get tested twice a year and have basic bloods and a FREE LIGHT CHAIN TEST which for my MM the main deal. This test looks for a protein spike, no spike is good meaning there is no detectable MM …… so far so good.
As far as working, well this really comes down to the individual depending on what treatments you are undergoing, how fit you are etc etc ….. On the whole most treatments drain the body of energy and along with the MM this can mean fatigue making it difficult to keep going.
Good luck
2) Oct 5th Jeff ….. Thank you for your kind words and your thoughtful consideration of the under 50’s …… Cheers
3) Oct 6th Leza …… Good luck to both of you. Yes it is is a big decision, I can’t point you in either direction other than to say that basically it come down to a Risk and Quality of life . In my case I weighed up my individual situation as to Risk and the prospect of what my Quality of life could be …… with my sister a 6 x 6 match it was a no brainer desicion, I took all the risk up front with the calculated hope of a reasonable long remission of good quality …… for me so far so good.
All the best to you and your husband
4) Oct 27th Deaton 1111 …… Yes I did gradually get the full use of my legs back . As with your husband I too was in a wheelchair and the with a walking stick. My first treatment after I was diagnosed was 21 days of Radiation Therapy on the Tumor in my spine. As the day went by this treatment shrunk the tumor and eased the pressure on my spinal cord which bought back enough feeling for me to walk aided by a stick. As I progressed onto Chemo and and weeks passed walking got much better. I have no lasting problems at present.
All the best to you both
TOO ALL “FIGHTING THE GOOD FIGHT” …… TRY AND KEEP POSITIVE WHICH I ADMIT IS NOT ALWAYS AN EASY THING TO DO, BUT A GOOD MIND AND POWERFUL THOUGHTS, WITH SUPPORT FROM LOVED ONES CAN KEEP YOU GOING …… GOOD LUCK TO ALL
RICHARD
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