This topic contains 9 replies, has 5 voices, and was last updated by 
janw 11 years, 3 months ago.
Hello all
Haven,t been on here since I was diagnosed
So I have now started cycle 6 and hopefully this will be the final one
I thought I would wait until I has nearly finished my chemo before I posted on here
Cycle 1
Passed out 3 times ,1 resulting in a head injury (that was fun)
Overnight stay in hospital.
I think being on Clexane being needle phobic didn't,t help
So that was cycle 1
Cycle 2
Started on Zometa
The next day seemed to have an infection
Back down the hospital 2 nights stay and high dose of anti biotics
Still not dealing with Clexane ,so off down the anti coagulant clinic I go
Ckexane stopped and warfarin begins yippee so much happier
Cycle 3
Beginning to bang the weight on and having side effects
Co ordination poor,eyes everywhere ,moody nothing new there lol,
And more .blooming Dex awake very early every morning
Cycle 4
Very much the same
Weight gain more apparent going to second hand shops for baggy tops ad trousers gone from a size 8 to a big Size 12
Consultant wanted me to increase thalidomide to 3 every night but had bad side effects
Warfarin leves still not stable
On fluconazole for oral thrush due to the Dex
O the Dex that withdrawal is awful
Knees swollen and legs just don,t want to work
Cycle 5
Getting into be swing of this now
A better 3 weeks
Warfarin still not stable might have to go on aspirin as had tears in front of the Consultant when she said I might have to go back on Clexane no no no
On Continous Fluconozole
Dex I am on a tapering dose 4 days of 20 day 5 5 and Day 6 2.2 much better
As the weather was so intense this cycle wasn't,t able to increase thalidomide, but am hoping to increase next cycle.
Zometa going well nearly died when I was told it was ongoing for 5 years or how ever the life span is
PP results have gone from 40 to 13 so am doing well
Cycle 6
Whey hey here we are now.
Hopefully wont have to do a 7 but I only take a small step forward don,t look too much into the future that's the way I cope.
Michael and I had a lovely overnight stay at Woodstock watching the Battle proms at Blenheim a present from Christmas
From the girls and son in law it was just so beautiful
Later on this month they also treated us to 2 nights in the Cotswolds ,so something nice to look forward to
Well folks thought I would up date you all
I have read every single thread on here and will be in contact with you all
Tom and I share our birthdays within a day wood wo
Take care everybody and will be in touch
😎 😀 🙂
Carpe Diem
Well done for getting so far, as you've probably read, my Chemo stalled badly for 2 months and after lots of head scratching by the medics i was put on velcade which is going ok. I think we were diagnosed at about the same time – February. So what are the medics planning to do next?
Glad to hear you are feeling much better after the six cycles of chemo. I could have swapped clothes with you because on thalidomide I went from a size 12/14 down to a size 8! All of my trousers/skirts just slid off me. I was flat on top and flat everywhere else. It's taken a couple of years for the weight to go back to my normal level and my bust/hips are the same measurement as prior to the treatment. But I'm up to a size 16, because the hump across my back from the collapsed vertebra requires a larger top!
I think my third and fourth cycles were the worst, but luckily I didn't have to carry on with any further cycles. Reading through other patient's comments, the side effects do seem to plateau at around the 4th cycle. Like you, I also had thrush and legs which wouldn't work, but I also had fatigue, nausea, a urine infection, constipation, bed sores and bone ache.
But at least the treatment is behind you and your myeloma levels are doing well. It was good to read your update and see you are doing well.
Take care
Jan W
Hi Richard
Thanks for the reply
Yes we were diagnosed the same time,and I read your post with much interest
I too luckily was caught early ,so touch wood no bone damage
The next stage for me is a SCT which is going to happen before Christmas .
What about you are you going down that route
Have you finished your chemo treatment
How are you managing living in a different country
And are you still working
Look forward to your reply
Take care
Jane
Hi Jan
Thanks for your reply
I was quite lucky that when I was diagnosed it was caught very early
Stage 1 .
When I go for a check up , I did ask if I could have a print out of my bloods etc so I have a better
Understanding of what's going on but all I got was the pp results .
I don,t mind the weight increase because I will need it when I have SCT
I try never to complain as there are so many people who are worse off,but your life is completely turned around
Have you retired completely from work now Jan
Look forward to your reply
Take care
Jane
Hi jane, sorry for the late reply, I didn't spot you had added to the post. As for me, things are a bit slow here. I am on my third different course of Chemo, PAD – stopped after first treatment because of increased Liver enzymes. Revlimid – stopped after one week because of the same Liver enzymes. Now Velcade at a very low dose. That will be increased with the second cycle beginning on the 12th. SCT was postponed but is now back on, don't know when though. They are also concerned that one of the drugs they give in the final session before STC can really stress the liver. I've started with Biphosphonates? to repair the bone damage. As for work, they are very strict here – No work whilst Chemo is going on. My wife pointed out to them that not working could lead to mental problems and that I needed the contact and a slow return back to work would be positive. So they have relented and I am allowed to do 6 hours at the German Red Cross old peoples home in the town. I'll just be helping with craft work and entertainment. Mind you I can't sing and just manage to play a cymble so that will be fun.
Apart from that Life's peachy here. My daughter has been on holiday for the last 4 weeks with 2 more to go. Temperatures have averaged 30 degress plus over that time and night time 20 degress plus. I did a German intergration course which aims to teach the language and the culture. I needed that so much for my confidence but it also gave me something to look forward to and do. That's part of the fight against MM I think, you mustn't dwell but just get on with things. I have too much time to on my hands so anything that gives me purpose is a positive. We have met a local support group that meets once a month. It's bad enough explaining your symptons and treatment to a group of strangers but in a different language when you know your accent is equivelent to something off "Allo Allo" makes it that bit harder. I cannot fault the medics, my care nurse at the practice is lovely and my heamotologist has a very good reputation here.
So there's enough waffle. Think you'll cross the finish line way before me so keep going and we'll see how quickly you can post some good news.
Hi Jane,
It's good news you were diagnosed at stage 1 before any bone damage or other complications. Keep asking your doctor/nurse for a print out of your blood test results. My hospital now allows patients to log on line to see all of your patient notes, including details of all blood tests and clinic dates. They are trying to sort out releasing information about pp levels and light chain levels.
I think my stem cell transplant really knocked my energy levels and with the bone pain, fatigue and lack of mobility, I still spend a good 12 hours a day sleeping otherwise I feel ill. I have to sit down for a large proportion of the day and take things easy. My husband carries out most of the housework including cleaning, washing, ironing, gardening and looking after the kids as well as taking care of me. Unfortunately, I'm no longer a good employment prospect.
Jan W x
[quote][b]My hospital now allows patients to log on line to see all of your patient notes, including details of all blood tests and clinic dates. They are trying to sort out releasing information about pp levels and light chain levels. [/b][/quote]
Wow Jan, I am seriously impressed by your hospital's forward thinking and freedom of personal information. 😎 😎 😎
Where do you attend? 🙂
Dai.
Hi Jane
Hope the six regimes will be enough.
I found taking the MUK Diary open at the results page , helped with getting blood results, but even so it is a struggle. Still, even my GP can't get the. I have to have additional blood tests for them. I thought computerisation was supposed to help, but it hasn't in this neck of the woods (West Yorkshire.)
Very best wishes.
Mavis x
Hi Dai
Yes, it's a forward thinking new scheme which was first piloted and funded by the Queen Elizabeth Hospital Birmingham Charity and the University Hospital Birmingham to allow patients access to their medical records. It's only in the last few months that the scheme has opened up to patients.
When the Queen Elizabeth hospital Birmingham was built in 2010, all paperwork systems were replaced by computer systems. Therefore, this hospital is probably much more advanced than some older hospitals in relation to how they store, monitor and retrieve their information. On my clinic visits, my consultant can show me a graph of the progress of my increasing light chains over the past three years, which is a powerful visual tool.
Let's hope the scheme expands to other hospitals across the UK for those patients wishing to view their personal medical records.
Jan W x
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