[paulbParticipant]

Hello Gary

Nice to hear from you, hope you are well.

After next week’s chemo, I will have reached halfway through the 3rd cycle and to date have had no side effects or other ailments to inform of – fortunate so far! I belive this in part is due to my being able to tolerate the dosage and my pre-diagnosis age/fitness levels. As such I expect over time this will gradually decrease as with all things that are age related.

I am very pleased to be included on the Cardamon trial and really believe it is the best option given they provide close attention throughout the course of your treatment and consequently any deviation will always get prompt attention. I for one am an advocate for anyone who wants to be fortunate enough to be asked and sign up to this trial. The chemo unit and trial team at King’s College Hospital have been fantastic and I could not have wished for better – long may that continue!

How are things going with you on the trial?

Regards

Paul

 

[paulbParticipant]

Hello Judy. Apologies for not responding sooner as have just read your email.

I was diagnosed on 23/12/16 with MM when i had high levels of paraprotein and haemoglobin resulting in a lot of pain. I was asked to sign up to the Cardamon trial at King’s College in London whcih I did. Following a bone marrow biopsy, MRI & PET scans, blood tests and so on, my first cycle of CarCyDex (Carfilzomib/Cyclophosphamide/Dexamethasone) chemo started on 09/01/17. Having nearly finished my 2nd cycle of initial 4 proposed cycles I am now almost pain free with thankfully no side effects. After completing the first 4 cycles, I will go through the computer randomisation of either having a STC or 2nd more instensive chemp therapy. I have since developed very minor fractures in my neck and spine but nothing too serious. Whilst the 18 month maintenance period is lengthy and on this trial you do still have a once weekly chemo to do, I believe that if you werent on the Cardamon trial, the 18 month maintenance would mean only regular Outpatient visits every few months.  I am certainly more comfortable and in favour of being looked after on a weekly basis and receiving monthly updates on my progress from the Trail Consultant however I appreciate that everyone is different and may not share this view but trust my comments have helped. Please do not hesitate to contact me again if you have any further questions or request for advice and best of luck with your Husband’s treatment.

Regards

Paul

 

 

[paulbParticipant]

Hello David

Thank you for the email and comments, these are a great help and I will certainly be liaising with Myeloma UK in due course.

I had more tests and scans today at the Hospital and finish the remainder of these on Sunday. Results will be made immediately known so my first cycle of chemo can begin – then the hard work really begins!

Glad to hear that your treatment went well and quality of life has improved – this is of some comfort and gives me hope for which I thank you.

Best Wishes for the New Year and please keep in touch.

Paul

 

[paulbParticipant]

Hello Andy

Thank you for the email, it was good to hear from you. The biopsy went well and is not too bad. I am scheduled for various other tests and scans next Wednesday to assess my condition and its severity, with chemo treatment looking to be started the following week if all okay to proceed.

I purchased a vee pillow yesterday which has helped with my resting position both on the sofa and in bed – which was a welcome relief.

Best wishes to you for your biopsy when due.

Take care and please keep in touch.

Paul

[paulbParticipant]

Hello Gary

I was only diagnosed on 23/12/16 and today read your email above. I am 49 and have always led an active lifestyle having played football for over 20 years and running short to long distances. In fact I was last year training for the London Marathon and had gained entry for this year too. I am a vegetarion and so enjoy a healthy diet and so when I visit the Hospital today for my biopsy will be looking to obtain information on how best to maintain this with the drugs, etc and so will be happy to share if interested.

I too have also signed up to the Cardamon trial and so am hoping this will assist in the long term in pushing forward to find a cure for this disease.

All the very best and hope you are keeping well.

Paul

 

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