[nbcParticipant]

Hi All

After last Wednesday’s Bone marrow biopsy I got a call on Friday from the hospital and the doctor asked me to visit him coming Friday(tomorrow) but I insisted I be told over the phone so he gave the bad news that I have MM. Met the doc on WED and we agreed to start VTD from tomorrow. In fact had some Infusion on WED itself. Doc explained side effects of the medicines and injections so a bit nervous about tomorrow. This afternoon also did an MRI and in the last 1 hour feeling a bit breathless and also the sole of the feet just started aching for the first time in 56 years.

Not sure what life has in store as I have a 17 years old daughter that I want to see at least graduate. Wife knows everything but daughter only knows that it is some form of cancer – haven’t told her it is Myeloma as she is preparing for her “A” levels. We have had few days of roller coaster with emotions and I know this will continue. Sorry just wanted to let my heart out in the public for the first time in my life.

Thanks and regards
nbc

[kayleParticipant]

Hi nbc
Scary posting on public forums: I think there’s a few of us on here who would never usually do so.
First and foremost, all and everything you are thinking and feeling is normal. I was diagnosed in August, and haven’t yet started the chemo. I’m 53, and the hardest thing was telling my boys, but they are adults. Most importantly MM responds very well to chemotherapy, and there are many, many therapies that are being used and trialled – and there is plenty of life left in you yet, there is still time for Graduation, careers, homebuying, maybe even wedding and grandchildren…..
The first week I lost to feeling sorry for myself, but as that isn’t who I usually am, I came out of that. But you are still in the extremely early stages of biopsy, diagnosis, acceptance..learning the meds, side effects and so on. It is all bloody traumatic. It does feel like your world is coming apart especially during a pandemic, but you know what, you will wake up one day soon, and MM will NOT be the first thing to come into your mind, or the last thing at night. There are plenty of people on here who will support, who you can sound off to. Try not to look too far ahead, remember that today, now, you are still here. Plan to make memories but try not to dwell on becoming a memory. When you feel good, treat yourself, enjoy time….I don’t know your circumstances but I real hope this has helped….like I say there will be others on here who will support. Take care, goodnight xx

[nbcParticipant]

Huge thanks Kayle. I was emotional reading your positive and encouraging words. I have been told that I am already at a critical stage which is why they have started the Chemo within days of telling me about my condition. It’s all happened all of a sudden.

All the best to you and family too.
Take care
nbc

[kevinParticipant]

Hello nbc

I echo Kayles post On my part I was diagnosed nearly 15 years ago and with a couple of hiccups on the way I am again today in full remission. Even since my diagnosis there have been new treatments with more in the pipeline. Being positive does help. I have seen my children get married and now have grandchildren. I fully expect to see them get married as well.
I am quite happy to answer any questions (if I can) that you may have.
Best wishes
Kevin

[silverlining1967Participant]

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

[kayleParticipant]

Morning Jane, Kevin and nbc!!
We’ve all been busy reading and responding which is truly lovely….
Although I was just saying most days my brain is mush! I haven’t yet started my chemo journey as fortunately, the MM has not done any damage, but no doubt I’ll have off days during that process. I’m pleased that NHS have moved very quickly for you, nbc, although not a good sign, it will help in the long run. As Kevin says, he’s still here, 15 years on, and that gives me so much hope and courage.
Jane I’m from Whitby originally, a Yorkie through and through, and we are the same age!And also like you, I never ever thought in a million years I’d be hit by the Big C….accessing MacMillan nurses, and researching the effects of these big pharma drugs and chemotherapy……Although my body wasn’t quite the temple it should have been, I have become much much better at self care….so, next week I’m expecting to start the next phase of this journey. Good Luck to you Jane, keep the chin up lass! And speak again soon…Kayle

[rebeccaRParticipant]

Hi nbc, When I was taken into hospital – at very critical stage due to misdiagnosis- like you I looked at it via my daughters perspective. She was revising for her GCSE’s and I was so worried about affecting her, not being around to see her settled etc. Anyway GCSE’s came and went then A levels and now completed her degree and off living in another country atm! If only I knew that in the beginning I would have saved myself a lot of self torture. Myeloma life is now a long and winding path to navigate – some bumps on the way – but then that is life. You have time to breathe and more importantly time to develop coping strategies that work for you and keep your mind strong. None of the chemo or the SCT was ever as bad as the damage my mind caused me. I read lots of books on cancer, mindfulness, positive thinking etc to help. I could never envision a time not dominated by MM but it does come. “Marathon not a sprint” used to be quoted on here and it really is true.
Rebecca

[silverlining1967Participant]

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

[nbcParticipant]

Wow, huge thanks Kevin, Jane, Rebecca and Kayle for such encouraging and motivating words. I used to be an overly optimistic person but in the last one week that attitude had taken a massive hit. After reading your experiences I have no choice but to remain positive.

Went in for the first Chemo(VTD) today and discovered that I have 97% abnormal plasma cells in the bone ( this was around 1% in year 2011 so bit of a shocker really ). Yesterday’s MRI results weren’t very positive either. Even though the regular blood tests of the last 9 years showed some abnormal reading for Paraprotein doctors were not overly concerned. It all happened in the COVID lockdown period as I had not given blood for few more months than normal.

Anyway, had the first injection and also came back with a massive bag of all the medicines which I will start taking from tomorrow when I am also having a blood infusion.

In deed the journey ahead is going to be long and challenging so many thanks once again for making me believe that things can get better. 🙂

Take care all.
Naren

[kayleParticipant]

Hello everyone!
I used to be asleep by 10pm….anyway, just to say to aJane silver linings, my youngest brother still lives in Brid, and I lived in Hunmanby for a good few years before moving to Scotland! Small world!
And Naren, mind over matter…I thought that was easy, until MM hit me. However, I think the journey through the chemo sounds much harder than the condition, and this is exactly when we need to pull up our boot straps and dig in! Excuse my metaphors!
I know it gets better…..Kevin, Jane and Rebecca have told us it will.
Keep on getting up each day, do what you can do that day, don’t beat yourself up. Guilt gets us nowhere. Have courage…..
K xx

[silverlining1967Participant]

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

[dennisParticipant]

A long journey ahead of us all I think. No matter who we are this news effects us all, but it’s nice to know we are not alone. I had my PET-SCAN Friday traveling from Torquay to Plymouth, fell asleep during the scan which helped. Hope to start other treatment this week coming.My neighbor next door had cancer so have been asking him questions about chemo, how he felt and hair loss which never happened, as I like my hair. Anyway stay safe and most of all be POSITIVE we will get through this. I am lucky reall as there are no buses running past my house.

[shaun3Participant]

Hi everyone,

great to feel tht I’m not the only one going through this, although obviously wish for your sakes tht I was! 53 seems to be a young but common age for diagnosis. Tht was 2 years ago for me and much of what’s been written above resonates with me. I cried like a baby for a week but have been surprisingly positive since then. Human nature is a funny thing isn’t it. Since Mar 18 I’ve had two stem cells transplants (auto and allo) and I’m currently MRD- (no sign of disease). No idea how long tht will last but I’m really optimistic about the future. My initial reaction was to take early retirement but 2 years later I’m getting grumpy again if I think others are getting promoted at work over me. I’ve been told to live in the moment, stay positive and stay strong – at the end of the day none of us really have any option. I have a few dark days but i recognise them ow and just do some more yoga or cycling which I find helps me get through them quicker. Sending positive vibes your way nbc – let’s kick its butt together.

Shaun

[nbcParticipant]

Thanks Shaun for the kind words and wishes.

Hi Everyone

You may have been wondering where I disappeared. Sincere apologies for a delayed update. There was a problem as I had some side effects. Will share details only if you all OK as my experience with the side effects was not very good and I do not want to scare anyone. On the other hand I think it would be worthwhile knowing how different people react differently to the drugs. Please do let me know if you want to know more.

Things seem to be back on track now but only been few days so it’s a case of wait and watch. Just hoping for the best as I really want the treatment to work.

Take care ALL.
Naren

[silverlining1967Participant]

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

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