[TinaParticipant]

Hello Amelie,

Patrick had an accident in the garden and hurt his back. He went to the local Gp two weeks later as his back was not any better had a blood test and was told by the doctor of his suspicions – the GP was right – confirmed a week later by a biopsy.

Regards
Tina

[TinaParticipant]

Dear Roz,

What a seriously strong and brave woman you are, I am sure Michael was truly proud of you. I can only imagine the pain you are going through right now, my kindest thoughts are with you.
Love Tina XX

[TinaParticipant]

Hi Norman,

My husband Patrick goes through fazes when he has monthly infusions of Zoledronic Acid (Zometa)mainly when he becomes hypercalcaemic (too much calcium in his blood). I am happy to say he has not suffered any side effects to date.
I believe the side effect Liz is referring to is caused by long term use which may cause a degredation of the bones in the jaw.
Good Luck

Tina

[TinaParticipant]

Hi Gaye,

Yes, Bendamustine definately would not be suitable with your low platelet count. Patrick is having a platelet transfusion nearly every week now and the consultants are leaving the Pomalidomide for as long as possibel as his paraprotein count is good.
We live in Buckinghamshire – hope this helps.

Love

Tina

[TinaParticipant]

Hi Bridget,

Very interesting…I wonder what the op could be. Similar to Min, Patrick has five crushed verebrae & two have been "fixed" by vertebroplasty but he too has rcently been suffering with more pain although now in his ribs.
I remember Stanmore Orthopaedic Hospital very well I used to live close by – I attended when my dear brother fractured my arm in a play fight!

Best Wishes
Tina

[TinaParticipant]

Hi Kevin,

I am really shocked that your consultant hasn't heard of Pomalidomide, although not widely available in the UK it has been going through testing in a big way in th US for some time.
You might have read Patrick used Bendamustine from Feb – August this year with little to no side effects and a very good result in reducing paraproteins, in fact he has has much better results on Bendamustine than with Revlimid.
Sorry I'm a little gob smacked with your consultants views,

Wishing you well,

Tina

[TinaParticipant]

Hi Elizabeth,

Patrick had the sister procedure Vertebroplasty which was 100% successful in reducing pain he had in his upper thighs and knees.He could hardly walk before the procedure but after just two weeks the pain dissapeared like magic!
Similar to Min's hubbie Patrick has lost a total of 5ins which really upset's him. Kyphoplasty was not an option.

Good luck and best wishes
Tina

[TinaParticipant]

Hi Debs,

It was great to meet you last week, good luck with the table sale tomorrow. Patrick didn't suffer any side effects worth mentioning and like Mari says the time seemed to go by very quickly.
All our very best

Tina X

[TinaParticipant]

Hi Michelle

Oh your poor mum. Like Bridget Patrick has been in hospital this yeear with pneumonia. IV antibiotics will surely sort it out, the timescale depends on finding what bug is the cause. I know now that with any sniffle or cough the consultant is called right away and she drags Pat in – it used to be kicking and screaming but who want's to spend time in hospital.
Best wishes and a swift recovery for mum.

Tina
XX

[TinaParticipant]

Dear Gaye,

Your response to Revlimid appear very similar to Patricks. Currently he is taking Thalidomide, he also uses Itraconazole a broad spectum anti fungal drug as he has had serious problems with fungal lung infections.
At the moment he is having transfusions of platelets once a week, 2 – 3 units of blood every 2 weeks and is running out of places to insert a cannula which really gets him down, neutrophils are constantly low – 0.5. GCFS injections increase neutrophils only very very temporarily and then drop right back down again. He controls back pain with MST and has got used to the peripheral neuropathy esp in his feet. Otherwise he actually feels ok right now!

Best Wishes
Tina X

[TinaParticipant]

Roz,

Interesting to read ecoli was found as the last time pat was in admitted (about 6 weeks ago)with neutropenic sepsis the culprit was ecoli.We thought the contamination could have been transmitted via fish pond water. Initially I was horrified as ecoli can be put down to poor hygiene but I new that was not the case.
Roz, Patrick has had some very very close calls and has eventually pulled back from the brink – I hate to think how you must be feeling it's a truly awful place to be – keep strong & positive, Michael may turn the corner any day now.
Best Wishes
Tina X

[TinaParticipant]

Hi Roz

The only salts I can think of are mineral salts e.g.calcium, magnesium, potassium. These minerals have to be carefully balanced in the body – maybe Michael had a mineral imbalance of some sort. Calcium is a common one in MM. What does the consultant say?
If your GP is no use what about seeing the Macmillan nurse, they are specifically trained to listen and advise and have empathy and a better understanding of our situation that most GP's. You should not be going through this on your own, really Roz I really admire you for your strength and you DON'T strike me as someone who would give up.

Best Wishes
Tina X

[TinaParticipant]

Hi Gaye – We were told that the bendamustine was accessed as part of a clinical trial however he was not part of a group of people taking part just on his own? Access to pomalidomide is through special circumstancesas he has exhausted all other recognised treatments.
Similar to you Pat's counts have been low sometimes critically low which became most apparent during the fifth and sixth cycle of Revlimid which he stopped taking around Nov 2009. Even so he still began using bendamustine in Feb 2010 which has been known to drop counts even more – needs must I guess. The gamble paid off and his counts improved for approx 7 months. How many cycles of Rev have you had?

Tina X

[TinaParticipant]

Hi,

My husband Patrick has the myeloma – even though he is in his 50's he still has Jet black hair and hasn't lost any either during or after his SCT or since with all the chemo he has endured!…and still looks younger than me

Best wishes
Tina X

[Author]

Posts