[ElizellenParticipant]

Hi again, Ivan.
Wishing you all the best for today's appointment!

One thing I have bought that really helps when I go to see various doctors is a small digital voice recorder, no bigger than a memory stick which records everything said and can be downloaded onto a computer or IPod etc for later confirmation of all the words used and plans for future treatment.

Too late for today I know but the company I bought from ship within a day or so and have them on sale at present
http://www.gizoo.co.uk/Products/PCGaming/PCGadgets/USBDigitalVoiceRecorder.htm

[img]http://www.gizoo.co.uk/Images/Products/USBDigitalVoiceRecorder/Additional/sm-3-usbvoicerecorder.jpg[/img]

[ElizellenParticipant]

I am so sorry you have had to join our group of MM warriors, Ivan.

Welcome to the best place on the www to find accurate information and interact with others with similar problems.

Hopefully as you have been diagnosed before you have suffered any bone problems you will be treated in time to stop any degeneration such as for some of us was the first signs of this wretched disease.

We have many members here who have been able to lead a fairly active life post-diagnosis, so I hope you remain relatively healthy and active for many years to come.

Luv
Eliz
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[ElizellenParticipant]

Like Shirley, I had to stay in overnight as when they removed the femoral line I bled quite a lot a soon as I got up to get dressed. (Stupid new nurse on the ward who thought just a small plaster would be enough!)

If that hadn't happened I would have been back to "normal" immediately I think, as I didn't seem to feel any after effects at all.

Hopefully by now you are fine.

Eliz
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[ElizellenParticipant]

Another happy to have a blue badge here too!

Though my hubby has one becaue of his chronic back problems, it means I can park closer when on my own, and in some places not even have to pay for parking.

We have discovered there are 4 disabled spaces near the rear entrance of the hospital which do not come under the rule of the car park moghuls, so often get not to pay for appointments even!! It does mean a loooong walk for Sam when I m going to specialist appointments, but as I now have a mobility scooter I can go to my zoledronate (sp?) sessions on my own and not make him push me in a wheelchair or take the chance of being able to find a "friend of the hospital" or porter to help me on my way.

We enjoyed the luxury of sitting on the promenade at Lyme Regis eating ice cream yesterday where though it is not signed officially we know Blue Badgers can park for 3 hours free!

Though, like most of you, I would prefer not to need the privilege I am grateful for it.

Eliz
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[ElizellenParticipant]

Good to hear you had such a great time, David, and at a bargain price too, well done you!!! 🙂

Eliz
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[ElizellenParticipant]

Gosh, Dai, you really have been through the wringer!!

Hopefully when (not if) you get the CR verdict you and Janet can start getting back to whatever passes for "normal". 😉

Eliz
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[ElizellenParticipant]

Wow, Eve!
That IS impressive 🙂

The shortest it has been for my infusions has been an hour and a half (plus 15 minutes each way walking along the long corridors)

Eliz
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[ElizellenParticipant]

I am so glad to hear you have been given 3 whole months off!!

Have a lovely relaxing time in the Rhine and take lots of photos so we can really envy you when you post them. 🙂

Eliz
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[ElizellenParticipant]

I am so glad to hear you have been able to get back to taking hacks, Carol, you must really have missed being able to get out for a decent ride!

And it is great that you now have effective pain relief too. 🙂

And I noticed in another post that you are now in remission, may this last for a long, long time!!

Eliz
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[ElizellenParticipant]

It is good to hear you are all set for your 2nd SCT, Keith. I hope you have a great relaxing holiday to boost you in preparation for the stay in hospital.

Love
Eliz
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[ElizellenParticipant]

It is good to hear from you, Roz!

I often think of you and hope you are managing to sort things out and jog along OK

Lots of luv and hugs
{{{{{{{{{{Roz}}}}}}}}}}

Eliz
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[ElizellenParticipant]

For anyone not sure, to start a new thread you need to first make sure you have signed in.
Then click on the forum which you think is most relevant then scrolll down to the bottom and to the right there are the words "Start a New Discussion".
Click on that and a box will open where you can add a title and type whatever you want.

Hope this helps someone!

Eliz
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[ElizellenParticipant]

Hi Vicki, I have not logged in here for a while so hae just seen your post.

I was 60 when I was diagnosed in Feb last year after having a stiff back for 6 months or so culminating in searing pain which sent me to the GP who luckily sent me for blood tests within a week or so.

I had 6 cycles of CDT immediately then a stem cell transplant in August/September 2010.

I was lucky enough to get no discernible bad side effects from the CDT and sailed through my SCT with not even a sore throat let alone the sore bum and iritated everything inbetween that many people do. Only a reaction to one of the pills they put me on afterwards (making me vomit) delayed my discharge from hospital after 3 weeks.

I am now officially in Complete Remission and since then I have only had problems with the back pain from my disintegrated vertebra which have dislodged a fragment or two, nudging them a bit too close to my spinal chord for comfort or surgery.

I too, like your Dad, was fit before diagnosis (used to go to the gym 3x a week and lifted heavy weights there as well as doing lots of active classes), and the nurse thinks that was the reason I have responded so well with only minor problems. So it is possible your Dad will have the same uncomplicated reaction to his treatment, at least I do hope so!!

Hopefully these words of encouragement will let him (and all your family) know it might not be too hard a journey for you to travel!!

Thinking of you
Eliz
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[ElizellenParticipant]

So sorry to hear of your Dad's passing and interested in the possible hereditary connection.
Is there any chance his medical team would be able to test you and your siblings to hopefully catch any early signs in any of you?

Eliz
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[ElizellenParticipant]

Wow, Min that does sound like an interesting new way of harvesting stem cells.

As I have two large rolls of fat, one above and one below the navel that will not shift I would love them to try removing them and see if they could get any stem cells from them. A case of "2 birds with one stone" in my opinion!!

[Author]

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