Hi Kath,

Yes, both Gaye and my husband Patrick are currently using Pomalidomide. Patrick too was allowed it under special circumstances and has recently finished his first cycle. If you have read any of my past posts you will see that Patrick had a successful year on Bendamustine, which is not a new drug, without side effects, before it stopped…[Read more]

Hi Debbie,

Interesting to see how the effects of Rev and Dex differ for each patient. Patrick used to take them both in the evening which did not affect his sleep, if he took them in the morning he would be sleepy all day. Hope you get on well with the Rev.

He has just completed the first cycle of Pomalidomide & has suffered very badly…[Read more]

Thankyou Gaye,
With regard to the low neutrophil count, Patrick has had extremely low counts for over a year now. Mostly the count is 0.5 but has dropped down on occasion hence the number of stays in hospital last year with neutropaenic sepsis.Similar to you Patrick has a low platelet count too.
He is also suffering with more pain this time in…[Read more]

Hi Jo,
Yes, Patrick was on Bendamustine with Thalidomide for almost a year with very good results. The only drawback was that the Bendamustine appeared to knock back both his platelet and red cell count, I will say however that this was also a similar scenario with Revlimid previously.Patrick did have to take anti-sickness tabs before and on the…[Read more]

Hi Gaye,

So sorry to hear you are in so much pain, I guess you must be taking MST? Patrick uses Oromorph for the breakthrough pain which doesn't appear to have any detrimental side effects.
Hopefully the MRI will identify the cause of the increase in pain and something positive can be done. How is your calcium level? Patrick always…[Read more]

Dear Gaye,

Very happy to hear you were granted use of the Pomalidomide. Ad=fter one year of partial remission on Bendamustine the devil within has again raised it's ugly head. As you know Patrick is in the same boat as yourself and will be starting Pomalidomide in the next few weeks. His paraprotein and calcium levels have taken a dramatic rise…[Read more]

Hi Amelie,

Great news that John is in remission – enjoy every minute.
Patrick was admitted to hospital at 2am Christmas morning with a temp of 39 deg, preceding this he had be suffering with a hacking cough but no other symptoms.The hospital was amazed that he had not been given Tamiflu tablets, the "inoculation" for swine flu and they gave…[Read more]

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

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

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…[Read more]

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

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…[Read more]

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,…[Read more]

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…[Read more]

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

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…[Read more]

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…[Read more]