Hello there Dai,
That is a pretty detailed account, well done on your attention to detail. My wife, Cecilia, has been on Valcade since last November and she gets an infusion every second Friday (no Dex due to problems with it 2 years ago). Thank goodness she is doing quite nicely now and the dreaded side effects (PN, mouth, nose and eye infections) have practically all gone, just a bit chesty for the first day or so after treatment. Her only problem (which is not a problem when compared to what she went through for thr first 3 years) is the constant tiredness. She spends most of her time in bed and sleeps quite a lot. I think that this has more to do with the MST (morphine). So Dai, take heart, you are doing well and I sure hope that the leg complaint deminishes PDQ.
Best regards,
John
Hello there Roz and thanks for calling in. Never fear, you will never be forgotten on this great site 'cos you had such an important input. I hope I speak for everybody when I say this. Like you, I have'nt been contributing lately, just too busy, but I do "drop in" for a quick look now and again. I can assure you that the adage "out of sight, out of mind" does not apply here.
Kindest regards,
John
Hello Dai,
That sure is a tough punch. As most other people on here have said, you have been a great inspiration and I'm sure, you will continue to be for a long time to come. My wife is doing very well on Valcade for the past 4 months (and the same drug nearly killed her 3 years ago!) so I urge you to "take heart" and continue the good fight.
As Kipling said "…be thankful you're livin', and trust to your luck.
And march to your front, like a soldier"
Best regards,
John
Hello there Roz, and I'm sure glad that that you still "drop in" from time to time. Just like everone else on here, I often think of you and your many contributions. Please keep them coming.
Kindest regards,
John
Flippin' brilliant. You're a tonic!
Hi Roz,
When I saw this poem I thought of you (in the nicest possible way), and I think that you will see the humour and honesty in it, that I believe you always portray in your posts.
WHEN I AM AN OLD WOMEN
When I am an old woman I shall wear purple
With a red hat which doesn?t go, and doesn?t
Suit me
And I shall spend my pension on brandy and
Summer gloves
And satin sandals, and say we?ve no money
For butter.
I shall sit down on the pavement
When I?m tired
And gobble up samples in shops and press
Alarm bells
And run my stick along the public railings
And make up for the sobriety of my youth.
I shall go out in my slippers in the rain
And pick the flowers in other peoples gardens
And learn to spit.
You can wear terrible skirts and grow fat
And eat pounds of sausages at a go
Or only bread and pickle for a week
And hoard pens and pencils and
Beermats and things in boxes
And now we must have clothes that
Keep us dry.
And pay rent and not swear in the street
And set a good example for the children
We must have friends to dinner and
Read the papers.
But maybe I ought to practice a little now?
So that people who know me are not too
Shocked and surprised
When suddenly I am old and start to
Wear purple.
Jenny Joseph
Good grief Roz, what a wonderful gift you have!. Such gorgeous sentiments and a terrific way with expressing feelings. I am lost for adequate words that should thank you for a wonderful posting.
Love and admiration,
John
Hello Gill,
My wife Cecilia initially had a fierce time on Valcade and Dex and she was eventually removed from that course of treatment.That was nearly two years ago. Now she is back on it, on a much lower dose and without Dex. So far so good. The current side effects are fatigue, occasional constipation and infections to her nose, eyes and mouth. She also has a cough now and again. Unlike Stephen, she does not have a swollen face but she does have "bags" under her eyes. Perhaps you should mention the possibility of a reduction in the strength to the doctor?. Then again, you know that this is such an individual scourge of a disease, the reduction may not suit poor Stephen.
Kindest regards,
John
Hello there Wolf,
My wife attends the clinic just once a fortnight now and she must give blood for the various tests before she gets her treatment of Valcade. We wait for about two hours and then most results come back. Some other test results dont return for a couple of days and only then does her doctor see them. Unless there is something amiss or urgent, he will wait until her next visit and then discuss any issues. He has said to us, over the course of various treatments "when you dont see me then all is well". So, when we hear nothing from the hosp we assume all is OK. "No news is good news". Perhaps this is the same way that your doctor does things. Have a chat with your team nurse and let them know of your concern. Best of luck.
John
Thats good to know Gill. In the early days Cecilia had a canulla fitted (when she was an in-patient for many months) but eventually it had to be removed because of infections. I will suggest the PICC line on our next visit in a weeks time. This is a great forum. Thank you all.
John
Hi Jen,
That is very interesting about the subcutaneously administration (such difyclut slpeling!). My wife and nursing staff are experiencing fierce difficulty in finding a suitable vein in her arms each time we attend the clinic. This has become progressively worse over the past few months (she has been on all the treatment regimes during the past 4 years) even though she uses the electric "arm-warmer-uppers" prior to treatment. To be honest, I have become more apprehensive before each visit about the injections (and subsequent discomfort (another clinical name for pain!) that she must feel, than the disease itself. I wil ask the team about the alternative injection next time we are attending. By the way, the Valcade (without the Dex) seems to be working well, so far, although she continues to sleep for most of each day and night.
Keep well,
John
Hello Jentay,
Yes, my wife Cecilia is now on her second course of Velcade. The first course, which included the dreaded Dex was particularly harsh on her, but it did the business. However, after about three months she had to come off it because the adverse effects were too debilitating. That was about one year ago. Now,after Revlimid for a few months, and a long break from any chemo, she is now back on Velcade (half the dose and without Dex and only once a fortnight)and is doing quite well. Much better than before.
So, I hope this info gives you some sort of comfort. Of course, as we all know, MM treatment seems to be so for each person. Wishing you the very best of luck.
John
Hi all,
well, I'm glad to see that I am not the only one losing posts lately.Talk about being paranoid! I thought that you were all ignoring me:-D . Anyway, I submitted two seperate posts since Christmas (ie in Other Topics – new discussion)but neither one has appeared. However, I did reply to a current topic and that appeared ok. I have heard about losing a sock in a clothes dryer but this has me baffled. I hope this post appears – fingers and toes crossed!!
John
Hi Keith,
Thats tough alright. But, as you can see, there are a whole bunch of good people supporting you. As Sarah has already said, Valcade is doing well as a new drug (my wife is on it after a gap of nearly two years and is doing quite ok, although this time she is not taking the dreaded Dex and is therefore in much better form). So, look up off the ground (there is no money there – I already found it!) and let the battle commence.
Good luck,
John
Dear Jo,
My wife, Cecilia, has recently gone back to Valcade at a much lower dose (and without Dex) and is doing fairly well. She has had all the usual treatments, ie SCT, Revlimid etc. Perhaps your consultant might consider previous treatments at a lower dose also.
Regards,
John