[davidbrParticipant]

Karen

That is brilliant thanks for letting me know and the more detail the bettr. I find it helps to discuss things with other MM suffers and you have help me thanks.

Just wondering why surgeon said you did’nt need the 2nd Op.

David

[davidbrParticipant]

Karen

Sorry to be a pain but just breifly how did your Vertbroplasty go. What did they do was it just one day in hospital? If you are busy no problem and thanks anyway.

David

[davidbrParticipant]

Karen

Thanks for your thoughts I think you are right and I will speak to my GP about a 2nd opinion.

David

[davidbrParticipant]

Hi Karen / Anne.

Anne did you get any answers to your bloated stomach? My Stomach is very bloated at present, seems more food is going in than coming out. I try not to take co-codimal no more than 2 a day so am not sure if the bloating is caused by pain killers or MM.

Karen glad to hear you finally got diagnosed can’t belive it took 4 years you must be very tollerent/ paitent.

Just want to say how I am getting on. Went to back speciallist and she said I didn’t need any treatment for my crushed vertabrae. I was very pleased at the time as I didn’t want surgery. She said she would refer me to my local pain clinic.

Having thought about it I am a bit surprised i am not having the crushed vertabrae fixed. As I am 1.5″ shorter and my waist is 2″ bigger, I have problems breathing due to small chest cavity, and have had various levels of pain over the last 2 years. walking is difficlt and I walk with a sideways stoop as I can’t stand straight. I find it difficult to find a sleep position due to pain etc. etc. etc.

Best Regards and wish you both well. David

[davidbrParticipant]

Hi Anna

Thanks for your reply.

I like you had back pain and the first doctor gave me an exercise sheet and said take some paracetamol. The 2nd doctor asked me if I wanted a “sickie note” and gave me naproxine which gave me kidney failure. Fortunately the 3rd doctor a locum was on the ball and realised I might have Myeloma. After an x-Ray which showed my 2 crushed vertebra I was diagnosed with MM.

I was told by the back specialist there was nothing he could do until I had the MM under control. Hence the 2 year wait till now before I talk to someone about having my back fixed.

Once again thank you for you reply it has been very helpful and I wish you all the best.

David

[davidbrParticipant]

Hi Anne

Slightly off topic from your post but I am interested in your back OP. I was diagnosed in May 2013 and had my SCT in Dec 2013. I was told I was in complete remission by my consultant recently so am currently not on any treatment. I have 2 crushed vertebrae which I am seeing a consultant about next Monday so will have to decide if I want to have them fixed.

If you could let me know more about your back OP I would very much appreciate it. Like how long where you in hospital, how long to recover, and questions I should ask and things to be aware of. Why did you decide to have it done. Mine is very painful day to day and I am really suffering at the moment. Co-codomal take it off but I don’t take them as they make me constipated. Did you consider pain management such as patches.

Any advice you can pass on would be great and I thank you for reading my reply.

Best Regards and wishing you well David

[davidbrParticipant]

Hi All

I was on maintenance Revlimid after my SCT last December as part of the Myeloma X1 trial. I took the Revlimid for 3 months May-Jul but my platelet count was below 100 so they took me off it. I do feel better now I am not taking anything and feel at my best for 2 years. I have my 3 monthly Consultant appointment on the 24th so am hoping for a good report.

Best wishes everybody.

David

[davidbrParticipant]

Just a suggestion.

I have a smart phone and use a voice recorder APP to record all my appointments with the hospital. I find them invaluable as a reference which I return to again and again especially my earlier appointments when I didn’t understand the terms being used. Also very good as I forget much of what was said as soon as i walk out the door.

I always tell the consultant I am recording for my own reference and later referral.

And yes you have a right to see and have a copy of any information your doctor has on file. I always get a copy of letters sent to my GP.

• This reply was modified 9 years, 12 months ago by  davidbr.

[davidbrParticipant]

Hi Susie

Do not fear the Zometa Infusion it is pretty painless apart from the needle for the drip. I have never had any side affects from my monthly infusion in the past year. I drive myself to the appointment and have never had any problems. The nurses at The Pines clinic Darenth Valley Hospital, Dartford are brilliant and make it a pleasent visit.

Glad to hear you are feeling better now with the good results.

David

[davidbrParticipant]

Hi Susie

I am fortunate to have wife as my carer and for support. I don’t know how I would have got through without her. I was diagnosed in May 2012, had my SCT at Christmas and now am fortunately on Maintenance X1 trial drugs Revlimid. I an having a bad week and am very tired with lots of aches and pains at present so Myeloma never goes away.

I can only wish you well and hope that you can find someone to support you through your fight with Myeloma.

My thoughts and best wishes are with you.

David

[davidbrParticipant]

Hi Sarah

I had my SC harvest in November last year. I had it at Kings London about 1 hour each way from my house in Kent. Mine only took 2 days, but on the 1st day they had only collected a small proportion of the cells but the next day with help from the nurse they managed to get 8 million which is the requirement. The machine I had was returning my cells back with the blood.

On the first day your husband will have a blood test which will determine if he has sufficient SC to harvest. If not you will be sent away with more injections. He will have a tube to each arm so will have to sit still for around 7 hours. It is a painless procedure and apart from the sitting still and not being able to go to the loo not unpleasant. I felt no ill effects and was fine afterwards, just glad to go to the loo. 🙂 :-).

I had a Hickman line fitted, the fitting was not pleasant but I soon got used to it and I gladly showed anyone who asked. I had to wait 5 weeks for a bed at Kings for my SCT and I was only in for 16 days.

Hope this helps and his SC harvest, SCT goes well. You will get through it and on the other side looking back it wasn’t that bad. I would do it all again tomorrow no problem.

Best Wishes David

[davidbrParticipant]

Hope your SCT goes well and you achieve complete remission.

Best Regards David 🙂

Ps. I put this on the bottom of my previous post but it was left off when I hit post.

[davidbrParticipant]

Hi Deborah

You are in for a bit of a tough time but don’t worry it is not too bad and you will get through it. I had my SCT just before Christmas 2013 about 7 months ago. I am in partial remission and currently on maintenance drugs mainly 10mg of Revlimid but I have to take up to 32 pills a day. Mostly to counter the side effects of chemo. These include pain killers, laxatives, aspirin, antibiotics etc. I have 2 crushed vertibra as a result if my Myeloma so my back is quite painful most if the time.

I would take a laptop or iPad if you have one I found it invaluable for keeping in touch with every one by message and FaceTime. Takes some wet wipes you will need them, something to suck you will get a sore dry mouth. Something you really like to eat like chocolate as the loss of appetite is unbelievable and most food will turn your stomach especially hospital food. Take lots of loose light clothing and a pair of Crocs as most hospitals are quite warm. Also ear plugs as the nurses bless them crash and bang about all night

[davidbrParticipant]

Hi DXS
As I understand it the standard treatment in the UK as allowed by NICE is 4-6 cycles of CDT followed by SCT and then no further treatment until the Myeloma returns.

Also you get 2 lots of chemo to a SCT. The first a small dose by infusion as an outpatient followed by injections to stimulate you stem cell growth. Then if you have sufficient stem cells they are harvested. When you go in for your SCT you have a further large dose of chemo via your Hickman Line before your stem cells are replaced.

Perhapse the difference in dose is because 1 is taken orally in pill form while the other is infused directly into your blood stream.

I had my SCT in Dec and was told I didn’t really have a choice. I have only acheived partial remission and am luck to be on the Myeloma X1 trial so have now started on Revlimid. I am 59 by the way.

Wish you well David

[davidbrParticipant]

Hi Author. Sorry to hear of your wife’s problems.

When I had my SCT in Dec 2013 after the Chemo I was very violently sick. Then I had very bad diarrhoea for about a week. I remember one particularly low point when I was sitting on the loo with my pants full of poo. I hadn’t been quick enough dragging the drip to the toilet. Blood running back up my cannula where it hadn’t been changed and feeling very poorly. I thought it can’t get worse that this can it.

I didn’t have a sore mouth as I used the mouthwashes they gave to excess. I had a very sore throat and could only drink cold milk for about 3 days.

It does get better but is a very bad experience which I wasn’t really prepared for. As you say the nurses bless them were too busy to give the help I needed so I was left to fend for my self. Often waiting hours or days for treatment to arrive for sore throat, sickness, diarrhea etc. which didn’t help much. Even getting Paracetamol for my constant headache was difficult.

I must say I am concerned about your wife’s Hickman line and infection that doesn’t sound good. It needs to be sorted as soon as possible.

I was very ill for about 2 weeks but got better in the end and was out after 16 days which is very quick.

Hope your Wife feels better soon.

Regards David

[Author]

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