[mattkboParticipant]

Hi Amanda,

Thanks for your good wishes, planning for a great remission.

The unknown is the hardest to handle and hardest to plan for too. I take each day at a time and everyday try and give myself the best chance of staying healthy for as long as possible. Just after my SCT I read a book called ‘Anti-Cancer’, there are lots of tips about how to eat well and exercise etc but also how to handle a lot of the thoughts and emotions we probably all have. It was written by Dr David Servan-Schreiber ( published by Penguin Health) it really helped me after the SCT to deal with the void that can appear when the structure of chemotherapy and regular hospital visits is removed. I wish I had discovered it around diagnosis time, would have stopped a lot of sleepless nights.

Take care,

Matt

[amandaParticipant]

Hi Matt

Thank you for the idea about the book I will get that.  I am finding the delays between treatments and waiting for results takes so long.  The hospitals have lost two blood tests which upon I am waiting for results back since Christmas.  After the courses of treatment have finished there doesn’t seem to be any urgency in having an appointment or blood test before hand.  Have you experienced this laid back approach or is just my hospital.  Good luck with your treatment hope you have a long remission. take care,  Amanda.

[Anonymous]

Matt, bought the book for my kindle on Saturday , really finding it useful, thank you so much for mentioning it, hugs Helen

[mattkboParticipant]

Hi Amanda,

I’m really surprised and disappointed that your hospital has lost results, no this has not happened to me. That must be frustrating and a worrying. I normally have to wait a few hours to get general blood results ie haemoglobin ect and then 4 days for Paraprotein results or Biopsies.  Have you considered or are you able to change hospitals? I think there was a week or two delay between ending CDT and Bone Marrow Biopsy.

Hope the book helps, take care.

Matt

• This reply was modified 9 years, 8 months ago by  mattkbo.

[mattkboParticipant]

Hi Helen,

Thanks for letting me know you bought the book and are finding it useful. Sometimes when things are tough I re-read certain chapters. The book also got me meditating, I find it also helps.

Take care,

Matt

[bev2504Participant]

Hi Amanda

Sorry to hear about your lost blood tests, it’s really unacceptable. I generally have bloods taken on the same day as clinic and have results back on the same day, so the consultants and the team always know what they are working with.

Matt…….thank you for the book reference, I’ve purchased a copy and will begin reading it when i start on my new medication regime at the hospital tomorrow.

Thanks again

Beverley

[charlie67Participant]

Hi can any one give me some advice about car insurance.  Am I obliged to inform my insurer of my diagnoses? My renewal is due soon, and I’m planning on staying with Tesco who I’m currently with, but not sure if I should disclose my cancer.

thanks

Charlie

[arthursParticipant]

Hi,

I am new here; I’m 41 yrs with two kids aged 15 and 11 and was diagnosed last September on my birthday. My treatment hasn’t been straight forward due to other complications. Was initially on Cyclo,dex and Velcade but due to a reduced response was changed to thalidomide around Christmas. Due to increase in Light chains, thalidomide has now been stopped.

Due to funding issues, I have now been moved to the Macmillan Centre at UCL where hopefully I will be able to commence on Lenalomide with Dex. I will be having yet another muscle biopsy tomorrow….. and then following on from there proceed with the new treatment.

It has and is still difficult for me to come to terms with it; but I’m trying to take it on a daily basis.

 

[bev2504Participant]

Hi All

After my horrendous time in Feb on CDT, I am due to start cycle 6 of VCD tomorrow. At this point, I am undecided as to whether or not i am going ahead with this last cycle. The neuropathy from the Velcade is horrendous, leaving me in bed 5 days out of the past 2 weeks!

That said I’ve had a really good response on this treatment my PP levels were down to 8.9 when last checked 3 weeks ago, i’m hoping this is enough of response so that I won’t need anymore Velcade. Then it’s time to think about the next stage, which will be another bone marrow aspiration, followed by the high dose chemo to prepare me for the STC. There are so many positive stories on here, at the moment it just seems like a really long road!

 

Beverley

[amandaParticipant]

Hi Beverley

I had VCD but am now on VDT (thalidomide) I had neuropathy in hands and feet so velcade was reduced. It is now under control.  So hopefully you will be ready as I almost am for the SCT which to be fair is quite a scary procedure but I am sure that staying positive and upbeat is half the battle to winning.  Good luck.  I should be having my SCT in August after the usual harvesting and bone marrow ,( which I find the worst thing to have )  then head down and go for it.  Let me know how you are doing and I will try to give you an update to how it all goes.  take care,

Amanda

 

 

[bev2504Participant]

Hi Amanda

Thank you for the response. My 6th cycle of VCD was postponed on 25th July, due to the Velcade side effects. They started me on a new medication to help reduce the nerve pain, which has worked somewhat. I started my 6th cycle on a reduced dose of Velcade on the 2nd July. It didn’t take long for the side effects to re-appear, but at least I’m only on a weekly injection as opposed to twice a week. I’m just waiting for my bone marrow aspiration appointment so that they can fully assess how effective the induction chemotherapy has been, not looking forward to that procedure!

I hope your SCT goes as well as can be expected, keep me updated.

Kind regards

Beverley

[Author]

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