[Judd1Participant]

I have recently been diagnosed with Myeloma a depilating cancer which attacks your plasma cells and in turn destroys your bone marrow. Within 4 months (since February) this year having just turned the rip young age of 40…. I was just like everyone else without a care in the world, accept for a few bad spells of back pains, tiredness, and aches which progressively worsened after seeing a highly recommended Osteopath in February this year. I soon became aware something was seriously wrong with me after 4 trips to A & E via 999 calls due to feeling like my back was collapsing and severe pain, the first 3 times I was told nothing was wrong with me, and that it was in my imagination as my X-rays and CT scans showed nothing out of the obvious, even though I was on morphine every 2 hours and 30+ pain killers a day didn?t touch the pain, I was released from hospital in unimaginable and indescribable pain, and sent back home to spend a further 2 weeks in bed unable to lay down in bed, stand up or walk as every time I tried to stand up my legs were unable to support my body, and back spasms which felt like an LIVE electric wire had been connected to my spine. Although I suspected something was seriously wrong despite the hospitals inability to diagnose me on 3 occasions; how could someone go from being able bodied to bed and wheelchair bound within one month??????? things became even more serious when one night after 4 constant days of back spasms unable to move in bed, I was placed to lay on my side supported by a bank of pillows and within 2 hours I needed to move but couldn?t….. I was hit by a level of pain I can only describe as UNDISCRIBABLE PAIN , my spine felt like it had broken in 2, my eyes rolled to the back of my head and I almost stopped breathing the pain was so horrendous and unbearable, I felt like I was dying on a scale of 0 ? 10 the pain was 100, another 999 call resulted in 3 ambulance crew, 10ml of morphine, gas and air and 2 hours just to lift me out of bed. My back felt like it was breaking and I later found out that exactly what had started to happen, my spine had fractured and had started to COLLAPSE, I am lucky to be alive and thank god that a diagnosis was found thanks to the ?Whittington Hospital? having piecing together a jigsaw of health events which only showed up through a blood test. My Myeloma consultant made me aware that if I had gone undiagnosed for longer my spine would have collapsed, crushing all vital organs, or just broken and killed me BASICALLY I COULD HAVE BEEN DIED WITHIN A FEW MONTHS….. THIS IS SERIOUS……… I will be starting treatment padicmac trial which includes chemotherapy on the 2nd of July for 3 ? 6 months then I will need a stem cell translate, it?s a long, long, hard road from here but at the end of the tunnels theirs a glimmer of hope and light ? I would really like to meet or chat with others effected by Myeloma.

[jmsmythParticipant]

Judd
What a terrible time you have been through and so young. I'm sorry to have to welcome you to the site but you are in the right place so WELCOME. Although I have been a member of the forum for many years -6 to be exact – hubby diaganosed early – he has just started treatment past two weeks CDT. So I'm not experienced to give a lot of advice but we have lovely bunch of people here who I'm sure will be able to help with questions, tips and advice. So anything you need to know or to rant just come here

Best wishes to you
Love Jean x

[HelenParticipant]

Dear Judd
What a terrible experience! This disease creeps up on people so silently and with little to show until things are going horribly wrong.
Welcome?? to the site. There are many here who will be able to hold your virtual hand and offer help and advice if you need it. Read the back posts and learn as much as possible about the disease and treatment, it helps to understand why things are done the way they do them.
I was diagnosed 18 months ago at 56, after 5 years of gradually becoming more and more anaemic as the plasma cells took over my bone marrow, squashing out the healthy cells. I've had my induction therapy and stem cell transplant and have the luxury of knowing that I'm now in complete remission.
I wish you luck and a smooth journey ahead, myeloma treatment can be a bumpy ride, but keep in touch and we'll help where we can.
Love Helen

[BADGERParticipant]

Dear Judd
Welcome to this site
what an horrendous time you had I know the chemo will be difficult but neccessary can they do anything for your back I think when you feel a bit better there are certain operations you can have thank the Lord someone recognised your symptoms good luck with your treatment
Regards Jo x

[BADGERParticipant]

Hello Jean

How are you and Frank coping is it getting any better for him and you has it stopped raining in NI we have a fine day today for a change went for a little walk today got the kidney clinic tomorrow always a worry. Hoping to go to the IOW in a couple of weeks if all ok.
Love Jo x

[jmsmythParticipant]

Hi Jo

Hope things go well tomorrow at the clinic, I know what you mean about worrying. No matter what people say to me I get so up tight before we go – lets know hw you get on. Franks back is giving him merry hell. We did mention it to consultant and she said to wait and see how he is when we go on Thursday. It took her 14 months to find out what the pain in his side was! But when I see her on Thirsday I'll ask for X-rays. His protein had dropped again to 10 she said again its not a good thing. I have not listened to the recording yet – putting it off but I'm going to this afternoon. I remember her saying something that made me think that things were not right. He is getting medication renewed on Thursday. She put him back on 2 Thalidomde a night. He has no taste except for a martini!!!! So on Friday he will be starting the dreaded Dex for 4 days. She reckoned what he was suffering last time was withdrawal from Dex. He is getting quite a few power failures. Just gone to bed now.

Never been to IOW though our son who lives on Southampton goes often. I'm sure you will get there. Hope the weather will be good for you. We had 3 days of continuous rain. Thought it would never stop. We went out for dinner on Friday and the flooding was terrible.

Will cross fingers for tomorrow
Take care love Jean x

[tomParticipant]

Hi Judd

A warm welcome to you sorry you had to nip in, now lets hope they can nip your problem's in the bud and get you into remission soon.

Is the road Long? is tit a hard road?? I dont know you seem to have had it bloomin hard already 🙁 Its not a walk in the park but I had my SCT in December 2009 and am now in remission.

Good Luck on your road to recovery.

Tomm "Onwards and Upwards" xxx

[PerkymiteParticipant]

Welcome Judd, This is a great site and you will find all the information you need to take you on your journey, which will have its ups and downs. Have a good look around the site. Also there is a Myeloma UK nurse on call, free to call.

I have had Myeloma since June/July 2009. My neck broke getting out of bed and that was the first symptom I had! I have been through the Chemo and Stem Cell Transplant and at the moment I am ?on a Plateau?, with my PPs at 2.4. My next appointment with destiny is this Friday for my 3 monthly check up.

There are some good folk on here and I look forward to sharing your journey with you.

Kindest regards ? vasbyte

David

[tishwishParticipant]

Hello Judd

So sorry that you have had to join us on here but as previous folk have said its a good place for information and you will soon feel that you are amongst friends. It sounds like you had a horrendous time previous to getting diagnosed. My husband was in a similar situation with the severe excrutiating pain, trips to the doctors constantly for 3 months. He did have 3 crushed vertebrea, which have been cemented. He was diagnosed on 31st May last year and has had a full course of CDT and a stem cell transplant in December.The consultant said his main aim as well as treating the cancer was to try and keep him out of a wheelchair, so far so good. He is doing very well but he still has terrible pain in his back and is on painkillers and tens machine. Take it one day at a time and we are all here to share your journey with you.
Best wishes
Trish xx

[tmcParticipant]

Hi Judd
I have just read your post and what an experience,
I will add that I can really relate to it as it is almost the same as my husband only it happened to us over the christmas vacation 2004. His spine finally collapsed just outside the hospital and they operated on him that night. We have been 7 years from that day now and with lots of hardware in his spine and a walking stick he went on to go into full remmission and do lots of travelling and enjoying life with all the usual treatments and trial drugs and sct So it may seem bleak at the moment but there are beter days ahead. Just one day at a time and as Eve says deep breath.
We are all thinking about you.
Love Teresa.

[tmcParticipant]

Hi David.
Let us know how the three monthly check up goes. Hope the pp's stay under control
Love Teresa

[Judd1Participant]

I just want to say a massive thank you to everyone who has responded to my thread, it's such a relief to know theirs other people who understand what I have gone through, and am currently going through. Thank you all for sharing your stories… some are so horrific, but all of your stories have given me hope and strength. It's so reassuring to have a website like this.

Thank you all again xx

[DaiCroParticipant]

Hi Judd,

You paint a good picture of the pain.:-D

I was right back there with you. Mine was a very similar story with two collapsed vertebrae that had crumbled into small picees and were pressing into my spine… and my GP, after months of agony and 10 weeks sleeping upright in a chair, sent a chiropractor to apply massage and pressure points. Luckily for me he examined gently by sight first… and spotted something amiss. He phoned my GP and told him to order a CTScan pronto… he saved my life.

The CTScan ended with an Oncologist telling me and my wife that I had secondary bone cancer, primary unknown… within 2 hours I was rushed across South West Wales to Swansea (75 miles away). 6 high dose radiotherapy sessions followed over the next 7 days and at the end of the week I was not only walking for the first time in 3 months I was also pain free… bliss.8-)

I can't say that there won't be uncomfortable times ahead during treatments Judd… but 4 years down the line I can honestly say that the only pain related discomfort has been the Bone Biopsies… and they are essential procedures. In my scoring one 'super spasm' and you know what one of those is I am sure, is the equivalent of 20 Biopsies… a walk in the park for anyone who has had bad spinal pain.

Welcome to the forum… I hope you get as much out of it as you put in… 😎 🙂
Regards

Dai.

[VickiParticipant]

Hi there,

Just caught up with the post. You have had a real nightmare and thank goodness you have been diagnosed and now onto the treatment. My pattern Colin was diagnosed last October, unlike you, with few symptoms and discovered by a random blood test. Whilst I would not say we were relaxed with the treatment ( we found it all very intimidating and really in shock to begin with ), the treatment can work wonders 🙂 So all the very best with your treatment and road to remission

Vicki and Colin

[foxy555Participant]

David, Good Luck for Friday

You have helped so many people on this site and made the journey so much easier!!

Best wishes

Ann and Pete

xx

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