[stanley-1960Participant]

Hi to all,

I have just been diagnosed with myeloma  FINALLY. I just thought i would share my initial journey with you. In 2005 i was diagnosed with mgus as part of a routine blood check for diabetes. I attended the clinic for 2 years before being discharged with the words well you may get it when your 70 (I was 47 at the time). Since then i have had no symptoms until December 2013. Earlier in the year February i fell over on the corner of the sofa damaging my ribs under my left arm. I thought i had broken a rib but carried on regardless with the pain and swelling which reduced as the year went on . Then in December i was driving to work in the car when i sneezed. The pain in the same place as the fall felt like i had been shot. Shortly after that a painless lump appeared which seemed to grow quite quickly. In early January i attended my local GP who advised me it was dry blood possibly from a clot but sent me for an ultrasound scan. The scan showed an 8cm x 4cm x4cm  blood clot in the pleural space (so all the experts said). I the saw a thoratic surgeon who was unsure and arranged for a cat scan. The crushing feeling when he called me in to tell me that it was not a blood clot but a large tumour now 10cm x 4cm x 4 cm on the 5 th rib left side was the worst day of my life. He operated within 4 days and took 2 large biopsies 35mm x25mm x12mm thick but did not resect the ribs. The biopsy results indicated NHl of an aggressive high grade large cell lymphoma. Well nearly 2 weeks later staining tests complete and it is now not NHL but a plasmacytoma occurring externally from the bone ( several months afterwards and numerous x-rays later nobody can tell me if the rib was actually broken pathologically as i suspect). I have just had a full skeletal survey, bloods and the dreaded bone marrow biopsy. I have been told that chemo will start Friday or next Tuesday at the latest. I am going to sign up for the myeloma XI trial  cdt or rcd or ccrd (sounds like a raffle). I hope to share with you all and learn from your experiences with this dreadful disease.

P.S. I know this is off topic but i have just had very slight tingling sensations like mild pins and needles all over my body (even the soles of my feet) Sporadically all day is this normal .

Kind regards to all,

Stanley

[rebeccaRParticipant]

Hi Stanley, when you read your experience it sounds like you have had many years to get your head round it but I know it doesn’t work that way and when they tell you it’s an indescribable blow and the start of something all consuming until you get your head straight (if, in fact, you ever do). Good luck with your treatment you will no doubt be going down the SCT route. I wasn’t eligible for your trial but had chemo then SCt at Xmas and am now totally back to normal/fitness and drug free and just starting being monitored by 2 monthly blood test. Lifes good – feels better than ever now I appreciate everything so much more – and I feel MM is no longer dominating it in a negative way. You will get to this stage also, you are young and strong, so focus on the end goal and stay positive. There are lots of people on here who have done your trial/treatment who I am sure will help you on the way.
Best wishes, Rebecca

[stanley-1960Participant]

Rebecca,

Many thanks for you positive outlook. I’m really pleased you are feeling better after you treatment. Your comments are of great comfort and have given me a boost in what has already had more ups and downs than the lift operator at the Savoy. I’m afraid getting my head round this more advanced stage is proving a little more difficult then the MGUS diagnosis all those years ago. I must of took the consultants comments of you might get it when you are 70 too literally.    I am desperate to start the treatment and must admit to a little frustration in the time it’s taking now not till Tuesday next week if it’s oral or even later if is’s IV Carfilzomib (no beds). Once again many thanks for your best wishes and i hope your better health continues for a very long time.

Kindest regards,

 

Stanley

[rebeccaRParticipant]

Thanks Stanley – there is one saying that I used as my mantra during the whole process and even now – I got it from Eve “Worrying does not empty tomorrow of its troubles it empties today of its strength. It is so true and such a negative waste of energy. I reminded myself of this everytime I worried about my family etc and generally all the time if I had black thoughts. It takes a long time but with perseverance you can block a lot of unnecessary things out, lock it in a cupboard as Eve says, and just focus on the day. I also like Caroles saying “you never know how strong you are until the only choice you have is to be strong. Having come through it, for now, I feel like a warrior! I know I have the strength for whatever the future brings and you will also.
Rebecca

[keithmtParticipant]

Sounds like you’ve had a really rough ride and my thoughts go out to you.

I’ve just had my SCT so I’m hoping that I’m on a road to some sort of recovery. As for pins and needles in the feet, that’s exactly how my MM was diagnosed. I think a lot of people get these sensations as a consequence of the treatment but for some of us, it’s part of the symptoms.

My best wishes for the future.

Keith

[stanley-1960Participant]

Keith,

Many thanks for the the kind thoughts. I have been on the CTD for a week now and have had no more pins and needles just severe pain in the chest and shoulder. I have been told this is a good sign of the tumour reducing. I cant believe how much the swelling is reducing after only a week. I sincerely hope your SCT brings you a long remission.

Best wishes

Stanley

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