Hi myeloma2016,
Sorry i carnt be much of a help for you as i am slightly behind you as i have not had my sct as yet.its 6 weeks since i had my stem cells harvested so i wouldn’t have thought it would be the injections that i had to make more stem cells thats causing my joint pain.your joint pain could be a side effect of the melphalan you had.its very potent chemo and lets be honest all this medication we have all been receiving over long periods of time must tell on our bodies in some ways.have you questioned your consultant about your joint pain.is there anybody else on here that has/had sore joint pain couple of months after treatment/sct.hope you get your joint pain sorted.good luck with everything.take care.
Hello myeloma2016,
Im due to have my 1st sct on the 1st feb.i had my stem cells harvested nearly a month ago, but these past couple of weeks i have started having bone pain in my hands/fingers,knees,shoulders, also slight swelling in fingers and feet.not sure whether its still the vtd in my system or something to do with the stem cell harvest.like you its not severe but still a little worrying.be nice if anyone could enlighten us on this. I hope your joint pain soon subsides. Good luck with the yoga.
Hi airman68,
Thankyou for your post, im sure it will give us all a lift we need esspecially with your positivity.yes it is all very daunting and scary at first when you dont understad mm and its treatments and how it all works.eventually things start to settle down a little and we start to ger a grip with things.to know you and outher people that have been on their mm journeys for the amount of years you have just gives us all hope and to keep being positive.i hope your current treatment goes well and wish you all the best for the future, take care keep loving life.
Hello naren,
Really sorry to hear that you have experienced, what seems like some not so nice side effects. Im also on VTD, i start my 6th cycle tomorrow.like i have mentioned in my outher post, i have had some side effects but all have been quite manageable up to now.It just shows you how we all react so differently to medications.i hope that things settle down with your vtd treatment and it works for you.try and keep positive ( i know sometimes thats very hard to do).keep your chin up sending live n light your way.take care jane
Hi veggieperrin,
Although im not on the same regime as you, im on VDT and have just finished my 6th cycle of 8 treatments.i also have experienced vision problems. I noticed vision changes (blured) vision right at the begining of my vtd.i have spoke to the heamotolagy team and one of the doctors and they say its probably side effects of velcade/dexamethasone and should settle down once treatment finishes.hope this helps.
Hi,
Yes kayle it is a small world, and i find it gets smaller by the day.
Naren i hope your tratment goes well. Everybody reacts different, you may not have any side effects at all, some people dont. I too was quite a strong minded person before this,but ive found the treatment an emotional rollercoaster, not sure if its the VTD or the dexamethasone steriods or a mixrure of both.as long as it is doing its job thats the main thing.anyway i wish you luck, and as kayle says we have to find the courage to go forward.best wishes to all. Jane
Hello kayle, kevin, rebeccar,nbc.
Rebeccar your so right, the mind is a powerful thing, some of us humans do tend to over think things, and i have to admit i am one of them.im sure i will find my way of coping along my journey.
Hello kayle,whitby what a lovely place.i have visted whitby many times.i had an aunt that lived in hunmanby, just a mile outside of filey. I also have a cousin that lives in bridlington.we try and get to the east coat as often as possible for fish n chips and walk our dog along the beach.im originally from sheffield but moved just over the border to rotherham 13yrs ago to a more rural area.like yourself i too never thought i would have the big c esspecially at 53, i mean we are still spring chickens ( or so i thought). I suppose ive been lucky up to now,relatively healthy. We are all guilty of abusing our bodies at some degree through our lives.mine was smoking, not heavy, but still smoking.i gave up in june, but oh boy do i still crave one. But us yorkshire lasses dont give up that easy lol.good luck for next week, i hope all goes smoothly for you and your family.keep intouch all.many thank jane xx
Hi nbc,
My name is jane, i too was diagnosed with mm in june this year after being unwell for a few months.just like yourself i have never posted on any forums ever.i am 53yrs and am currently on my 5th cycle of vtd, infact i am waiting for my injection as we speak.i have just been talking to an elderly lady whilst in the waiting room, she told me she’s been coming here (barnsley hospital) for the last 18yrs.thats with one sct which lasted 9yrs and 3 different courses of chemo.how cool is that.we are still in the early stages, and everything is new to us.im sure we will get to the point were we wake up and mm and chemo, hospital visits will not be the first thing on our minds.i suppose we have to take the rough with the smooth.we have to adjust to a new way of life, and that will take time, we are only human at the end of the day.from being healthy and independant and life not being to bad ( in this day and age) to a life living with cancer, thats one big shock for anyone to get their head around.my vtd treatment is going well, my pp levels have come down to 3.6.had some side effects ie, nunbness and tingling in feet and fingers, heavy legs, constipation, sweating, weepy, angry, blurred vision,anxiety, all not very nice but we seem to get through.its hard trying to stay posative all the time, so we do have our rubbish days.forums like this one helps us on those bad days.nbc i hope all goes well with your chemo, and side effects are far and few between.very best wishes to all.xxx
Hello everyone,iam also new to this site
My name is jane, i am 53 years old and was diagnosed with mm in june this year (2020).it came as a big shock, as i have always been quite fit. I have been reading lots of peoples stories over the last month to try and find some answers and information about mm as i didn’t know anything about it or know anyone that has got it. I started vtd treatment 4 days after being admitted to hospital.i dont remember much about the first few days in there as my blood was so low.i had 5 blood transfusion over a period of days and began to feel a little more with it. I had lost about a stone and a half in weight, bearing in mind i was only 9st 9 to begin with.i was in so much pain with my back , just trying to get comfy was a major task.going to the loo a great upheaval.i just couldnt understand why i was in such pain.it wasnt till i got home 10 days later that i read on some paper work that i had a compressed fracture In the lumber reigion and buldging disc in thoratic part of my spine.my treatment has helped with the pain but i am unable to straighten up properly, and i have lost 1 and a half inches in height.i could barely walk from my sitting room to the kitchen for the first 6 weeks after coming home. I am responding well to my treatment, my pp has come down from 54.7 to 3.6. I have some of the side effects, ie, fog brain, fatigue, blurred vision, loud buzzing in ears, slight numbness in feet n fingertips, constipation,all bareable but my main symptom is anxiety, sweating and bouts of weepiness..maybe its a mixture of everything and still coming to terms with my diagnosis.i do have good days and i try to be posative but the anxiety just brings me down.i have had anxiety before on and off.i am supposed to be having sct somewhere after my 6th vtd cycle, but there is a back log from lock down and that might not happen now while early next year thats if we dont have another lock down .i try to take each day as it comes, but some days im just shit scared of whats to come. I know everyones mm is unique to each person, but reading outher peoples stories helps you to understand a little more about mm and also helps you through the bad days.so thanks to everyone who posts, i wish you all the best of luck with your journeys.keep positive.
