[thejollynorthernerParticipant]

Hi
I am the Jolly Northerner living in Lincolnshire.
Thanks to Mullverry for pointing out how to post on here 😉

Been in a great deal.of pain since last October but only managed to see my GP mid March.
After several MRIs, a CT scan and a bone marrow biopsy I have now been diagnosed with Multiple Myelomas in spine, rigs and pelvis. This came from me suffering from Mgus.
My Chemo starts on Friday.
Been on Co Codamol, no use. Tramadol did nothing yo assist my pain. Now on 5ml Morphine every 4 hours boosted with 2 paracetamol in-between. Helps slightly but walking and getting up is agony.
My pains shift about, hip then lower back, then groin and buttock.
Anyone else experienced similar ?

Cheers

[maidmarionParticipant]

Hi Jolly Notherner!

So sorry to hear of the pain and discomfort you are in, I fully sympathise as my husband was in a very similar situation at the end of 2020. He was in incredible pain and couldn’t pull himself out of the chair unaided, eventually was diagnosed with MM and an MRI, X-rays etc. revealed four broken vertebrae, complete compression throughout his spine and a lesion on his pelvis. His MM is in his ribs, spine, pelvis and thigh bones.

Following a year of treatment, which consisted of six cycles of VTD and a stem cell transplant he is now able to walk for miles (sometimes I have to tell him to slow down as I can’t keep up with him). He still suffers pain but it is greatly reduced and under control with medication (Zomorph, Oramorph and paracetamol) which he takes regularly and he is now able to cope. We are taking lots and lots of walking holidays and planning more trips away, just recently came back from the Cotswolds and are now on the edge of The South Downs in Sussex. Good luck in the coming year, it does need some strength to get through but hopefully you will think it is all worth it, just like my husband does. Big hugs xx

• This reply was modified 2 years, 4 months ago by  maidmarion.

[lilibParticipant]

Hello JN,

Sorry to hear that you have been diagnosed with this disease, but I regarded the diagnosis as a starting point for my husband. Like you, he had suffered from increasing back and hip pain for years, and it was only when he was driven to get stronger painkillers from the GP that she decided to send off some bloods for analysis. Within days we had a phone call from the hospital asking him to come in immediately for a biopsy, and the treatment started the following day. At that point, he was unable to walk more than a few steps, and unable to drive.

After about three months of treatment, things had improved enormously mobility-wise. It is now one year since the biopsy and start of treatment, and we are waiting for the stem cell transplant, but life has resumed a semblance of normality (although we have also had to curtail activities due to CoVid).

So as everyone says – treat it as a marathon, rather than a sprint, and things will get better. Wishing you and yours all the very best!

Lili

[mulberryParticipant]

Good morning Jolly Northerner
It’s always profoundly shocking to get this diagnosis, and easy to worry that the damage we have at diagnosis will be permanent, after all we are told that this is an incurable condition. However this isn’t true. As treatment progresses and the myeloma burden reduces, our symptoms usually significantly improve. (During treatment we may get other side effects of the treatment itself which can affect quality of life, but these are mostly transient although pretty consuming at the time).
I found I had to moreorless give a year up to treatment, induction therapy followed by stem cell transplant, but for the three years since have enjoyed a near normal quality of life, far from what I feared. I feared “treatable” in myeloma terms meant maintaining a steady state, but it really means very significant health improvement.
I did not have the lesions & bone damage you are experiencing, but one of my friends, who after diagnosis 18 years ago, was in a wheelchair for 6 months, is now leader of a local walking group and digs her own allotment. Mobility does slowly improve during treatment.
I wish you well during your treatment & that you can soon see improvements.
Jane

[thejollynorthernerParticipant]

Hi Lilli
Thank you for your post. It is messages like this that spur me on.
I have a keen sense of humour and that will never dwindle.
It is yet another of life’s tests, and with 6 children we’ve had our fare share over the years.
I have only had a limited contact with the Macmillam nurses but I was overcome just how good they are.
Never having chemo before, I assumed my hair would fall.iut, but no so I am told but may thin. So I decided I would have the lot whipped off anyway to raise funds for them as I would not be any good holding a coffee morning lol.
It is happening tomorrow and since Wednesday last week I.have raised £668.
I send both you and your husband all the very best and will try and keep updates on here once my Chemo starts on Friday.

Take care
Thejollynortherner 😁

[thejollynorthernerParticipant]

Hi Jane
Thank you for your posting.

Very informative as I literally know nowt lol

Heads up, I am a comedian and love making people laugh. My Macillan nurse could not speak to me over the phone due to chuckling.
In truth, I am.not and never have been a walker lol but being so debilitated with this now for 8 months is a bitter pill to swallow.

I am so glad I joined this group to chat and educate myself for the journey ahead.

I did ask the nurse if I could play the piano whilst on chemo. She said yes so I replied …is there room on the ward to wheel it in lol
That’s me all over…… keep laughing, its the best medicine.

Thank you again
Thejollynortherner or Dave

[lilibParticipant]

Well done on the fundraising, JN! We haven’t had any contact at all with Macmillan, but I presume that is because we are in a completely different part of the UK from you.

It is only in the last month (with stem cell collection) that my husband has lost his hair. It is starting to re-sprout, though. I’m sure that someone will have already told you this, but it’s really important to stay out of the sun, and certainly to wear a hat outdoors, even on dull days.

[thejollynorthernerParticipant]

Hi Lilib

With the physique I have, to sun bathe, I would need a licence.
Never been a sun worshiper an I have my baseball cap ready after the shave lol

Cheers

JN….Dave

[lilibParticipant]

I’m sure that you will look very cool in your baseball cap! But seriously, even if you are outdoors to walk to the car, or water the plants, keep your hat on!

So… about the piano. Will my husband be able to play the piano after chemo? That’s a bonus – he was never able to do that before. (Sorry – very old joke!)

[thejollynorthernerParticipant]

Lilib
That was my other punchline 😂😂

[normantParticipant]

Hi Jolly Northerner

My experience has some similarities with yours. Here’s a brief rundown in case it’s relevant.

I’m now 76 and until this started I was fit and active. In Feb 2021 I developed a pain in my lower back. I’d been doing some diy that involved crawling round the floor and putting pressure on a screwdriver so thought I’d strained a muscle but after three weeeks the pain hadn’t eased. Then the pain seemed to move and it became more intense. By now the pain was mainly in my right thigh, and it soon became paralysing. I needed a wheelchair to get about.

The local GP decided it was arthritis in the hip and left it at that. Eventually the pain was so bad that I went for a private consultation.

The first thing the consultant said was that there was no way that the degree of arthritis that I had would put me in a wheelchair and he sent me for x-rays and an MRI scan.

It was the MRI scan that revealed the cause of the problem and his advice was to go to A&E immediately. What the MRI scan showed was a growth on my L4 vertebra that was compressing the nerves in the spinal column. I felt the pain in my legs (both legs by now) but the problem was the growth on my vertebra. A few days later I had an operation to remove the growth. As soon as I came round from the anaesthetic I knew that the pain had gone.
The growth was sent off for analysis and the results of that indicated that I had plasmacytoma (which later developed into multiple myeloma).

After about six weeks the pain came back and I had another MRI scan. This revealed that there was no need for another op and I started my chemotherapy.

Over about three months of chemotherapy the pain subsided. I suffered quite badly with the side effects of the chemotherapy but stuck with it for another six months. Eventually I came to the conclusion that no-one could demonstrate to me that it was doing me any good (my paraprotein levels had never been high). I stopped chemo after nine months rather than the 12 that the consultant advised.

Since then I feel much better. Some activities give me backache and I have permanent numbness and pins and needles in my lower legs and feet. When it comes to walking I think it is the arthritis in the hips that cause me most trouble now.

Like you I tried various painkillers. I found oramorph most effective.

Altogether I was pretty immobile between Feb 2021 and May 2022 months, and it’s taking me time to build up my strength and stamina but I’m now able to do things around the house and garden that have been neglected for more than a year.

I hope that this is some help

Normant

[kh0305Moderator]

Hi Dave,
Another northerner here! My dad had a similar experience to you. He had been back and forth to his GP with pains for months, constantly being prescribed painkillers for pulled muscles due to his somewhat physical job. It all came to a head when him and mum jetted of to Cuba for their first ever long haul holiday and he ended up in hospital out there with pneumonia and one of the staff uttered the C word…. He finally managed to get discharged and fly home and went straight into hospital up north where, after 3 days of tests, they diagnosed MM. That was back in 2013. He had chemo (also no hair loss) and SCT (hair loss but it grew back with no grey!) and then had period of remission for 7 years and is currently back on treatment for his first relapse.

In his remission period he lived a virtually normal life, no more back, hip, rib pain and it was the return of the pain, albeit much milder, that alerted us initially to the relapse. The pain you describe sounds very like dad’s.
He also tried different pain relief combinations and for him morphine and tramadol worked best, but if no success keep flagging with your medical team until they get a combination that helps the most.

Though dad is still undergoing treatment, his bloods are in a much better position and his mobility much improved – no more hobbling around! The fatigue during the treatment has been his biggest issue since switching (the first treatment he was on for his relapse Dvd made him very sick and didn’t work) and it is nice to see him looking much brighter and him and mum are actually away on hols not far from you as we speak.

Hopefully with the chemo starting you will be feeling much better soon and it is good to hear you’re keeping that sense of humour going – it will definitely help! xx

[thejollynorthernerParticipant]

Hi Kh0305

Thank you for your post and glad your dad improved from his original condition.

I rang Macmillan Nurses today with regard to my morphine dosage of 5ml doing nowt.
They have increased it now to 10ml so we will see if that works.

Friday is my first chemo day so really looking forward to the 38 tablets I have to take before I set off for Lincoln lol.

Keep in touch and say Hi to your dad

Cheers
Dave

[tony642Moderator]

Hi there,

I am one of the forum volunteers and have only just seen your thread. I also have MM. You are correct in saying that being diagnosed is a life-changing experience both physically and mentally, but there are lots of treatments available, which means that if one regime doesn`t work well, there are others that they can try.

I know it sounds a lot to take all of those tablets, but if it works, then it’s worth it. At least if they make you rattle, people will hear you coming! We are here to support you through whatever you need to go through. Please keep us updated on how you are and how you are feeling. A lot of us on here have been through what you are going to go through so we know what it is like. Keep smiling and keep your chin up.

Regards, Tony

[kh0305Moderator]

Hi Dave,
How did the first chemo go? Hope you managed with all of the tablets!
Has the 10ml morphine helped at all with the pain?
Hope you’ve managed ok in this heat the past few days and aren’t feeling too bad. Dad sends greetings back and wishes you all the best with the treatment. We are all keeping fingers crossed you are feeling better soon xx

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