You are my heroes Tom & Tina.;-)
I have an en-suite shower/toilet to myself. It is approximately 5 feet from my bed to the door and another four feet to the toilet… passing the sink en-route. Even so, there have been times when I have barely made it… and a few times when I failed… so you having to put on your crampons and scale the stairs makes me want to stand up and applaud your efforts.8-)
Okay, I do have extensive bone damage… but I don't use a stick or any other support… I am just slow… and I seize up now and then. Well done you two for getting through your CDT with climbing and distance involved.:-D
Dai.
Hi Keith,
I am on week 3 of Cycle 5 Rev & Dex. I take my Dex on a Tuesday and like Andy I have the morning to myself and then pretend I'm a broccoli for the rest of the day, vegging out in front of the TV or computer.;-)
I sweat… profusely. On my second cycle I had to go in for some interim bloods… on a Tuesday. The phlebotomist thought I was having a heart attack and several people hovered near me in concern. I changed my shirt/'T' Shirt four times while in the clinic and I won a 'look like a beetroot' competition hands down. It was at this time, with my consultant on holiday, that I demanded an X-Ray on my shoulder… it was granted with the registrar who granted my wish looking terrified to come near me because I looked so red and bloated and ill. My two fractures were discovered but the staff in the radiology dept., insisted that I have a wheelchair to take me back through the hospital to my car.:-S
I jest… but the descriptions are spot on. I stay that way until approx: 11pm when I suddenly dry up and return to near normal. The Rev is more long term but each cycle finds me a little better and a litle less tired.. but even so, any exertion leaves me tired and sweaty and needing an hour or so's rest and recuperation. Hopefully that too will get beter the longer I am on the treatment.:-)
Look at the positives Keith:
[quote]I'm on my 17th month of Rev and Dex and assure you that it does get easier as your body adjusts to the drugs[/quote]
Keep on taking the tablets and follow Jen.8-) 😀
Dai.
Hi Mavis,
I had withdrawal symptoms from my CDT treatment… I went around the house shouting WHOO HOO! And.. it being near Xmas… there was a lot of carol singing as I recall.8-)
My normal medication regime carried on so the only sudden change was the disappearance of the C the D and the T… none of which I missed in the slightest… and I have never heard of any withdrawal symptoms in my four years on the forum. 😐 That doesn't mean it can't happen but if I was you I'd quietly celebrate your freedom from such effective but thoroughly nasty drugs.>:-)
Any side-effects should be reported to your lead nurse but I doubt that they will be directly attributable to the CDT.:-/
Dai.
Hi Ali,
You might be mixing up the Hickman Line procedure with the start of the harvesting procedure.
Your Mum will spend at least 24 hours in hospital when she goes in for her chemotherapy 'Wash and Rinse' before starting her GCSF injections which will be followed by her Stem Cell Harvest. I went in at about 2pm in the afternoon, received my chemotherapy 'Wash' about 4pm, followed by the 'Rinse' and was then kept in for approximately 24 hours before being let home.8-)
My Stem Cell Harvest procedure went as follows.
1. Fitting of Hickman Line
2. Chemotherapy 'Wash & Rinse' – preparing the body for the harvest of the Stem Cells.
3. GCSF injections to stimulate cells away from the bone marrow and out into the blood.
4. The harvest of the cels on the Harvest Machine and storage of the cells ready for the Stem Cell Transplant.
So as you can see, the only part of the procedure needing a 24 stay in hospital is No.2… 😐
Hope that is of help.:-)
Dai.
Hi Ali,
I'm also a Nottingham patient… my line was fitted in the Radiology Department and it took about 45 minutes in total.
I went to the DayCase Unit where I was talked through the procedure and made ready. I was then transported up to the radiology dept., where I had a 15 minute wait. The actual procedure, including local anaesthetic, included quite a bit of tugging and pulling but no pain as such.
It was a tad uncomfortable and you had to stay in one position but there were three nurses in attendance as well as the Doctor. The Doctor worked from behind me (with me on my side facing away) but one nurse stayed on my side (literally) and talked me through the procedure… telling me at what stage we were in the procedure and what the Doctor was about to do next.8-)
It was over quite quickly as I recall and after a five minute wait in the ante-room I was collected and taken back down to the DayCase. They kept me in the DayCase for about an hour and then I was let home.:-)
Mind you… I was back at the hospital with a temperature five hours later… but that's another story.:-D
Dai.
Hi Tina,
There are a few people on the forum that have made the transition back to work who will be able to offer more empathetic advice… But I would say that you should be guided by both your body and your mind.:-|
You might feel strong enough physically to undertake the major parts of your job… Or certain tasks identified and agreed by your HR Dept., and the occupational review but… If you feel mentally vulnerable, or emotionally unprepared for the work and the workplace, then let your HR Dept., know…. and put it off for a few weeks. Perhaps you can agree to a day or two a week for a few weeks to see if you can cope… don't push yourself and don't feel obliged… The only obligation you have is to yourself and then your family.8-)
Anyway… I am sure someone who has been there and done it will be along any minute now.:-)
Dai.
Hi Ian,
I developed PN after my frontline CDT and it was made worse by my Velcade treatment. At times is has proven to be quite painful and it is with me 24/7… at its worst when I am feeling tired. At its best I can only describe the sensation as being like chilblains… Or like that feeling you get as a child when you have been out in the snow… 😛
At its worst my PN crept into my calves and caused great discomfort… But that soon wore off as I finished Velcade… and these days it is more a nuisance than an actual pain. Although it did spread to my hands I am gratful that it never really took hold as I play guitar and other stringed instruments… and that would have been a pain too far. :-/
I take 5mg Amitryptiline tablets to help but I can't say that I've noticed a big difference. I take Gabapentin as part of my usual daily meds but there's nothing to beat rest and a good night's sleep for keeping it under control.8-)
Dai.
Hi Andy,
I'm glad you had a good time in the Lakes… I always enjoy my stays there, regardless of the weather .
The fluctuation in your PP's must be galling, to say the least… it's not so bad for me and Keith because we are on R & D as a maintenance regime… as long as our numbers stay relatively stable we are OK but you need yours to actively drop to a given figure for your SCT… I hope they can force them down over the next few cycles.:-|
Have they given any indication of a suitable number for your PP's? Either way, let's hope for some progress soon.:-)
Dai.
Great news David,
I hope you get to repeat this news for eons to come… and the good health to go with it.8-)
Dai.
Tom,
You and Elaine have made my day!:-) 😀 😎 😀 🙂
It is so good to know and see that there is good news to be had from bad situations. Your ever positive outlook and Elaine's care and companionship must make your home life a joy at the worst of times… so enjoy it all the more now that the times are good.8-)
Regards and love to you both.:-D
Dai.
Hi Jennah,
First things first… if your Dad's back is hurting don't let him pick up little bruisers… I fractured my shoulder doing just with my Grandson four years ago, when my bone damage was getting worse (although I didn't know it at the time).:-S
What treatment is he on? If it is his first (frontline) treatment it will be something like CDT (Cyclophosphamide/Dexamethasone/Thalidomide) or something like. I was shattered at the end of my 1st Cycle and didn't really feel much better until the end of my 3rd Cycle. As my GP said at the time, my body was 'going through the wringer and anything worthwhile that includes chemotherapy will make you feel much worse before it makes you fell better… but make you feel better it almost certainly will'.:-|
My GP was right… and it was worth every minute of feeling lousy.;-)
If your Dad's back stays the same or gets any worse then a call to the hospital (he should have a lead nurse) will do nothing but good.. whether they call him in or reassure him that all is well.:-|
It is very early days yet… your Dad has to stay positive and persevere through the next 8 weeks or so…. the corner will turn soon and he will start to feel the benefit of his treatment.8-)
My regards to your Dad (Name?0 and to you and your family.:-)
Dai.
Hi Eve,
I agree with you about hospital days… they really throw your routines out of kilter. I have quite a fixed routine at home, with flexibility when visiting but the hospital can turn you around in an hour or so or keep you for half a day. 😉
[quote]Good News Neuts 3.5 Platelets 57.[/quote] Good? Superb you mean. It certainly looks like Slim's reboot is working and working well… his Nuets are better than mine and Keith's already and his platelets are climbing prodigiously… go Slim! 😎
Turning point? He's plate spinning! 😀
Smile girl… and don't take any nonsense.:-)
Dai.
Hi Eve,
I think we have covered the Hickman Line removal elsethread but as soon as they are sure it won't be needed fot regulatr infusions of platelets/bloods etc., they will whip it out.
I was told that they like to remove it pretty quickly because long term wear (6 months or more, so no need to worry yet) can cause te flesh to mould itself to the line, making it that little harder to remove but even then we are not talking major surgery… just a little longer procedure. Mine came out four weeks after my SCT and came out like a breeze with one registrar and me in a side room of the Daycase Unit. I was surprised how quick and how painless it was… a little sensation on a tug or two and then he was saying 'that's it'.
It sounds like they are ready for slim to start producing his platelets independently… and if his next reading is up hat might be the time to ask about the line removal.
Slim (and you) are now on that road to recovery and hopefully a long remission… enjoy it all.
My son Ross and his wife Kelly and my grandson Owen (2) live out on the Isle Of Sheppey at Minster )he's a prison officer and she teaches at another prison… is that far from you?
Best wishes and regards as always.
Dai.
Hi Mari,
I can only wish you and Stephen the best possible results from his harvest and a smooth run up to the SCT itself The double GCSF injections sounds good… has the chance of Plerixafor been mentioned?
Your local hospital sounds helpful… I imagine they would like the experience… perhaps they have ambitions towards expanding their Haematology treatments… either way it is helpful and handy for the both of you,
Please pass on my best wishes to Stephen… and more than a few for yourself.
Dai..
Hi Helen,
Do you have much bone damage? Extensive bone damage seems to be the biggest drawback to insurance companies (and consultants). I have been quoted from 350 to 600 for a return flight to Barcelona… + a clearance letter from the senior consultant of my hospital.:-(
It will be cheaper to go to Portsmouth and take the ferry to Santander or Bilbao and then take a 6 hour journey across the mountains to the east coast. More fun too I'll wager.:-)
Dai.
