[debonthewebParticipant]

Thank you hat is most helpful xxxx

[debonthewebParticipant]

I have just been through one round of DT-PACE and am due to start another round on Wednesday. I am being treated at UCLH. After the first round I was requested to book into Ambulatory care as I live more than 40 minutes from the hospital. I thought they were being rather over cautious booking me in to the NHS hotel just in case I got an infection but when I arrived I found out I already had a temperature of 39.5 so was admitted straight to the ward. I ended up staying in hospital for eight days as the first lot of antibiotics didn’t seem to be bringing the temperature down and they couldn’t find the route of the infection. I then had my pic line removed and changed antibiotics which seemed to do the trick. I was discharged on Friday 16th May. I have since been a bit obsessed with taking my temperature and am quite worried about going through the whole process again prior to my stem cell transplant. I have been feeling very sick and extremely fatigued but some of that could be due to the radiation I have had to reduce the mass on my spine.
Good luck to you and your husband. At what hospital is he receiving treatment?
Fingers crossed this will all be worth while and give us many years of remission.
Deborah
http://www.mymyelomajourney.wordpress.com

[debonthewebParticipant]

Hi Trish

I am on the PADIMAC trial and have had 10 Velcade injections. My paraproteins have gone down significantly and I am very close to complete remission. Unfortunately I have Neuropathic pain in my arms, legs and fingers so my chemo has been put on hold for now with the hope the pain will reduce and I can then go onto cycle $ with perhaps a lower dose of Velcade.

I think it is very important to keep the doctors informed of even the slightest problem as in my experience they take it very seriously and if necessary will stop or greatly reduce the Velcade.

Deborah
http://www.mymyelomajourney.wordpress.com

[debonthewebParticipant]

Thank you Helen you may have just saved my life as I am coming down from a large dose of steroids and feeling very low and despondent. Fingers crossed we will all get through this.

Best Wishes and Take Care

Deborah x

[debonthewebParticipant]

Thank you I have just looked it up looks great!

[debonthewebParticipant]

Dear Megan

Thank you so much for the useful information. It looks like that as long as all my pre tests are ok and I sign the consent form I will start the first line of treatment on jan 28th.
I am hoping this will hold off the need of the stem cell replacement for some considerable time but it all seems a bit of a lottery!
I have heard a rumour that it may be possible for the patients partner to be put up in a local hotel when they are in for the longer spell in hospital. Do you know anything about this?

I must admit our lives have been turned upside down by all of this but i am trying to get my head around it the best I can.

Thank you for your kindness and support.

I do hope you are all doing well .

Take care

Deborah

[debonthewebParticipant]

Thank you

[debonthewebParticipant]

Hi Jo

The lister is also my local hospital. I live in Hinxworth near Ashwell but work in Stevenage old town not far from the Lister. I am just trying to work out the logistics of travelling down so often although I am reassured by the things people have said already. I have also looked at the option of my husband driving down and parking at the local NCP car park. This may work out a lot cheaper. I wonder if any one else does this?

Are you on a trial? It would be good if there are some bits I can get done locally but I am not sure how possible that is if I take up the trial.

Thank you for your understanding

Deb x

[debonthewebParticipant]

Thanks Tom UCL seems a great place if you do have to go anywhere. I shall look out for you No doubt it will become my second home soon
Deb

[debonthewebParticipant]

Thank you everyone for your kind replies. Yesterday I was back for my app at UCL I ended up having a bone biopsy, chest X-ray (due to rib pain) getting info about treatment options and a load of tablets,
The tablets I need to start today are Dexamethazone 20 x 2mg/day for 4 days, Ranitadine and Allopurinol. I am worried they will make me feel sick and my sister has arranged a surprise small birthday party tonight ( my husband told me as he was worried I would cope).
I have been invited to be part of the PADIMAC trial
Is any one else on this trial? I need to make a decision pretty quickly as they want to start treatment as soon as possible. I have to travel in from north herts to London on the train to kings cross and then walk down about 25 mins to the hospital. Will I be strong enough to do this? I could try to swap over to Addenbrooks in Cambridge who are running the same trial, but I have got to know the doctors at UCL and feel its the best place to be. There seems so much to think about at a time when any remains of intelligent thinking has flown out of the window!
My boss said I need to remain off sick for now but I love my job and feel I am losing myself.
I am grateful not to be doing this alone although I wish none us were having to go through this!
Thank you for understanding.
Deborah x

[debonthewebParticipant]

Hello

I am 49 yrs old and I have smouldering myeloma. I feel like admitting that is like going to alcohol anonymous! I am under Prof Yong at UCL so I'm in good hands. At the last count my plasma levels reached 39. I have just had an MRI scan and go back to see Dr Yong again on the 30th. I am symptom free but my mental wellbeing is suffering. Unusually for me I have had to call in sick today. I feel so worried and exhausted by it all.

I was diagnosed with MGUS in 2008 but didn't really take it seriously as I only needed yearly blood tests. now I am back to the hospital every couple of months and my usual positive self has taken a battering.

This is one club I didn't want to join but there again I suppose we are all in the same boat. I just hope I will smoulder for a long time but my numbers are increasing at a fast rate 🙁

Please forgive me for sharing

Deborah

[Author]

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