[CarolsymonsParticipant]

I give up most of my post is missing again….damn! Administrators?

[CarolsymonsParticipant]

Whoops half of my post is missing I wonder why? Sooo right now I am in Hammersmith Hospital London as my cancer numbers rose after only 3 weeks off drugs,

[CarolsymonsParticipant]

Hi Tracey
I finished the initial treatment 6 weeks ago but did find the 5th and 6th cycles the wort with very weak legs, shakiness, constipation and numbness (neuropathy) in my toes. I was off work for 7 months as I was diagnosed with a fractured collar bone but managed to return to work this last month off treatment. Staying home every day was doing my head in! Oh how I enjoyed being back at work which is at a high school in Southall London!

[CarolsymonsParticipant]

Second night in Hammersmith hospital…etoposide didn’t start till 4:30pm so will have a disturbed night as new chemo has to be connected every 2 1/2 hours. Saline drip 24 hours so here till 1:30pm tomorrow at least. Anti nausea tablets and IV steroids seem to have kept nausea away so…..all OK at the moment. Start injections Friday and have been warned to expect pain in pelvis and sternum. Also told to expect hair to fall out…I was hoping o keep my hair till the mephalan….oh well! Staying strong and optimistic.

[CarolsymonsParticipant]

I use an ipad and also get the internal error notice…annoying! Also frustrating having to remember to click the box each time I post to be notified of follow up replies by email.

[CarolsymonsParticipant]

Tonight I go into Hammersmith Hospital, London for the first step of the stem cell collection….10 hours of chemo….very anxious about his amount of toxin entering my body. How ill am I going to be? Transplant tentatively scheduled for early January.

Paraprotein now up to 4 (was 0) and lambda light chains 252 (were 61) I am so frustrated that these numbers dared to creep back after only 3 weeks off initial drugs. (CTD)

Carol

[CarolsymonsParticipant]

This has not been offered to me here in London, but Tom mentioned in his post that it had been suggested to him recently. The American Myeloma Facebook page had quite a lot about it recently with concerns expressed about the amount of radiation and the usefulness of the test. From what I understood it seems to have fallen out of favour in the U.S.

Carol

[CarolsymonsParticipant]

Finally have result from 29th November…..paraprotein now 4g/l so creeping up steadily. I am soooooo anxious about the high dose chemo this Wednesday. Taking the oral chemo tablets was difficult psychologically, but the thought of this chemo poison flowing directly into my heart for 10 hours via the Hickman line is doing my head in!

Carol

[CarolsymonsParticipant]

Oh no! But you still must feel blessed with your 4 years in remission and drug free……let’s hope I manage that long. From all I have read, Velcade seems to be very effective. In fact, that is what I was going to have if I had transferred to a clinical trial at University Hospital. Given that my numbers are rising after only 3 weeks off CTD I am sorry I didn’t chase the Velcade. You know even in Australia it is now used for initial treatment, but here in the UK they are still only offering CTD as first line treatment. Pet scan I have not ever been offered but seems it is standard in the US. Where are you being treated?

Carol

[CarolsymonsParticipant]

Thanks Jean I have emailed the transplant doctor asking if I should have these tests before collection….makes sense to me. Because my light chains and paraprotein started rising after only 3 weeks off CTD I feel they are now rushing me into SCT. On Monday I will have been off all drugs for 6 weeks. Paraprotein was only 8 on diagnosis in April, 0 in September while on CTD and already back up to 4! Worrying!

Carol

[CarolsymonsParticipant]

Thanks for your replies. I think have managed to resurrect a more positive approach. Hickman line was inserted last Monday; parmidronate tomorrow, 10 hours of etoposide Wednesday and stem cell collection on the 23rd. Haven’t managed to get my most recent paraprotein results from blood test on the 29th November, but lambda light chains dropped a little, so perhaps paraprotein did too. For now I am pretending it has! Still no date for SCT but doctor thinks early January. Anxious times!

Carol

[CarolsymonsParticipant]

What fabulous news David!

Carol

[CarolsymonsParticipant]

Transplant doctor tells me that once I have the chemo (etoposide not cyclophosphamide) over 10 hours I will be neutropenic and no way should I return to work which is at a west London high school….so I guess it is back on sick leave and half pay again. Collection is planned for 23 December….an early Xmas present?

Carol

[CarolsymonsParticipant]

It must be very frustrating for you with the drugs not bringing your paraprotein down and you are so much younger than me-at least I feel I have lived my life and what an adventurous life I had! My children are all grown up but I have the sweetest new little grand daughter in Australia and I so want to see her.

The transplant doctor assures me the chemo before collection will bring my numbers down again….is that what you have been told? I really do not want to go into the transplant with paraprotein and light chains showing in my blood work as research indicates that relapse will be sooner…..common sense tells you that I guess. I know my paraprotein was low at 3 but that was 10 days ago, it is probably higher now and chemo is still another 10 days away. Maybe I will have to do a course of Velcade before the transplant ……really do not want more drugs!

Carol

[CarolsymonsParticipant]

I am a bit behind you…Hickman line app't this Monday, 10 hours of intravenous chemo (etoposide not cyclophosphamide) on 11 December, 10 days of G-CSF injections, collection on 23 December, transplant early January.

I have been back at work part time for the last 3 weeks, but as consultant says I will be neutropenic after the chemo, guess I will be off sick again.

Carol

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