[Kazzam2Participant]

🙂

Hi my name is Karen, I was diagnosed with multiple myeloma last July after over 2 years of bad back pain. In the end it was a duty doctor that suspected something more sinister than backache and bloatedness.

I need to have a look round on here and check you all out (8-)). I suspect this could be the site I have been looking for.

[EttaParticipant]

Hi Karen firstly welcome a great site for any info you may need,
Every body is really friendly and all have different stories to tell.
So if there is any questions to ask your in the right place.
Regards Etta .

[tonyfParticipant]

Sorry that you are here, but welcome to the site. Myeloma seems to affect everyone differently and everyone has a different tale to tell. But whatever the problem or question I am sure that you will find someone to answer it here.
Regards Tony F

[Kazzam2Participant]

Thanks Etta,

I can tell already that people are friendly.

I put my story on my profile but will copy to here.

Thanks again Etta, nice to meet you. Karen 🙂

I am a 51 year old married mother of 2 teenage girls. Diagnosed aged 50 in July 2012, with Multiple Myeloma. Changed all our lives forever. We live in Rutland, but our nearest hospital is Leicester Royal infirmary, almost 30 miles away. Treatment to date, CTD chemotherapy in Myeloma Xi trial from August 2012 – four courses. Radiotherapy 8 gy to spine from T5 to T12 with an exit dose to the sternum. Vertebroplasty to 3 vertabrae, further vertebroplasty (cementing) awaited. (2nd MRI 11/5/2013) Autologous stem cell transplant January 2013 (stem cells in store) Medication at present Zoledronic acid (zometta) every 4 weeks. (bone strengthner) Morphine, zomorph 40mg twice daily Adcal-D3 oramorph Paracetamol. My consultant prescribeAzithromycin(antibiotics for emergencies), i am allergic to penencilln (sp) I have a back brace that has never been properly fitted. I have a slight curve, the physio recomended that I spent some time each day on a gym ball, it really helps with posture. I have a perching stool in the kitchen, murder keeping my cats off it. A board for the bath, again somebody was to come round an fit it. 9 months(approx). I do not bath anyway as it is very uncomfatable, and I cannot lie down I have a blue badge (parking0, which is very useful, though I have not driven myself for sometime. Worse than all this is the fact my consultant signed me of work for another 6 months, because of pain, risk of infection (I am a school cook) and I am waiting another vertebroplasty. Although i have family, they are out at school/college/work, so I have a lot of time alone. Our nearest realatives are 3 hours away and the few friends I have are working of course. I have nice next door neighbours, but cannot impose daily. As well as my job I used to work on Saturdays in our local cancer research shop, i miss that too, although I chat every now and then to the manager, I must ask my consultant can I go back. Is there an infection risk though. My husband (and daughters) has/have been very supportive and strong, but I sometimes feel guilty, as it has not only changed my life but of course all of us. I think my husband over worries sometimes, that is not a critisism, he has been great, I do not know how I could cope without him. Thanks for listening, reading through some threads, you all seem a friendly bunch, not the best way to make friends, but I hope we can. Take care Karen
Last 10 Posts

[Kazzam2Participant]

Hi TonyF,
Thanks for the welcome. Nice to meet you.:-) (bit of a smiley monster)
I hope there may be times when I can somehow help or support.
Regards
Karen

[tonyfParticipant]

Nice to meet you, you seem to have gone through the mill. What dates in January 2013 were you having your SCT? The reason I ask…..I was in the same transplant unit as you from January 29th, we could have been neighbours! We live in Leicestershire and I attend the various clinics at the Royal. I was diagnosed in March 2012, went onto the Myeloma XI trial. All drug treatment stopped in October, aborted attempt to harvest stem cells in early December, due to an infection. Successfull harvest in January, transplant early February. Last visit to clinic and I am in partial remission, not taking any maintenance drugs at the moment, waiting to see what happens at next visit to clinic. I assume that you know Dave and Cass the trials nurses and Jenny Rodgers, along with Drs Chapman and Barton.
May see you there sometime. Those who contribute on this site are very friendly and knowledgeable, most questions get a god response.
Regards Tony F

[jmsmythParticipant]

Hi Karen

Welcome to the forum – I know you would rather not be here but we are all a very friendly bunch. My hubby has MM and I don't know what I would have done without my 'cyber friends'. Great place to get support, share info, get advice and also if you want to rant this is the place to be :-),

Love Jean

[Kazzam2Participant]

Hi TonyF,
I had my SCT on 11th Jan 2013, i was admitted on the 9th Jan> . I was discharched on the 28th Jan, we missed each other by a day. I know Drs Chapman and Barton, but my main consultant is Dr Garg, I seen her a lot when i went for my vertebroplasty to the Spire hospital (husbands cover through work), Dr Rennie did op, it went very well,and originally e said I would need 2, then said one would be okay. Pain at the moment not good and i think I am shrinking again. Had MRI last Saturday. My next clinic is 6th June. I have my Zometta infusion on 23rd of May (4 weekly).
The Macmillan nurses are all very good, especially Dave, who goes the extra mile (for me anyway).
Who knows we may bump into each other sometime.
Take care
Karen

[Kazzam2Participant]

ps I was offered the maintenance drugs on my last visit by Dave, it was a bit out of the blue, and I declined as I want to give my body a rest as it has been battered.
Not sure if i have done the right thing though.
Regards
Karen

[Kazzam2Participant]

Hi Jean,

Thanks for a lovely welcome, I'm just about to put kettle on. Milk and sugar?:-D

Very nice to meet you, hope to share stories and rants in the years to come.

I have been on here all night, well a long time for me anyway>:-) .

See you soon
Regards
Karen

[tonyfParticipant]

I must have moved into your room as you moved out, can't remember the 'cell' number but I had white cups!
My next clinic is June 6th at 11.45 then upstairs for my monthly penidronate infusion.
Might just see you there.
You are right about Dave, very good and very thorough.
Regards Tony F

[Kazzam2Participant]

I was in the cell directly facing the kitchen. I think I was green cups, (chemo brain me!)

On the 6th June, I am on a clinic/consultant. at 11.25! But I am at the lower level.
My infusion is 23rd May. (day ward). The day ward staff are really nice, but is it me or does it sometimes seem a bit chaotic?
Take care
Karen

[tonyfParticipant]

May just bump into you on the 6th June, my appointment is 11.15, same day.
I agree with you about the day clinic seems to be chaos at times, but he staff are great, first name terms these days!
Regards Tony F

[MicheleParticipant]

A welcome form me too Karen.

I was diagnozed in May 2011 (age 49) and had a SCT in February 2012.
I was very fortunate to have been diagnozed at a very early stage before any major bone or kidney damage, so haven't had to have anything like you.
It must be awful and I really feel for you.

After SCT, it only took me about 4 months to feel normal again and 15 months on I'm leading a drug-free remission life and making the most of every day.

I too workied in a charity shop and thoroughly enjoyed getting out meeting people but it had to come to an abrupt halt in March when I caught a very bad dose of flu'. I then realised that my weekly Tuesday mornings weren't worth risking my health for. Sadly customers and some staff seem to think that walking in and coughing and sneezing all around you is acceptable.

I haven't got any children but have a wonderful husband who is always there for me.

Take care and keep posting.
Michele x

[Kazzam2Participant]

Hi Michele,
Thanks for taking the time to reply. I am finding this a lovely friendly site. It is good to hear from people who know how it is. I had coffee last week with a girl from work, who said I look really well, which is nice to hear, but because you can walk etc, people think I'm cured (touch wood my kidneys have been ok this far). I am on morphine for the bone pain, I do not know if I will ever be off it.

I notice quite a lot of people get back to work quite quickly. I would like to go back, I love my job but it is quite heavy, (catering), not just cooking, equipment is heavy, putting deliveries away, tables and chairs to put up (school). I hope the zometta will make me strong enough.
Sorry if I am going on.
Glad to hear you have a supportive husband. It is lovely to meet you.
You take care
Karen
xx

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