This topic contains 18 replies, has 12 voices, and was last updated by 
mhnevill 11 years, 6 months ago.
I had my consultant's meet this morning. I haven't slept very much or very well these last few days, knowing this meet would determine more than treatment for Myeloma… it was also a matter of time, buying me some time if the trials were withheld from me.:-|
Blood was taken and I waited… a consultant down, so the wait was a good part of an hour. Eventually my consultant came out and called us in. I was surprised that she had every thing in hand… Bendamustine out and a new treatment decided upon and ordered, with a starting treatment in the Day Case Unit to follow the consult.8-)
The 'New' treatment? Velcade! :-0
Fair enough, it got rid of a secondary tumour [i]AND[/i] reduced my light chains in 1 Cycle. It then got my light chains to 0 in 3 Cycles and stayed at O for the next three, when there was no perceptible evidence of Myeloma to be found. A miracle drug then? Yes & No. Yes for the way it dealt with the tumour and the light chains and no for the increase of PN and the fact that the Myeloma started creeping up again after 6 weeks and I was declared relapsed after 10… and that included no hospital visits or bloods over the extended Xmas holidays. On January 30th I moved onto Revlimid… and he we are. 🙂
I thought about it and agreed… why not? If it worked so well once, even given that my Myeloma has moved on and there is always the chance that like antibiotics my Myeloma might grow resistant to the drug (my consultant's words) but we both agree it is worth going with. 🙂
I know she is buying me time as much as controlling the disease… I will have 2 weeks of twice weekly Velcade with 20mg of Dex on the subcut day and the same on the day after, meaning 2 shots of Velcade and 8 shots of Dex in the 2 week period. I will then have a week off) partly due to the Bank Holiday and partly due to letting the Velcade get to work before a Free Light Chain Test. Ha… 8 shots of Dex… Happy Days! 😀
I wasn't expecting it but I'm happy to go along with it. My consultant said that if the Velcade showed promising signs then she would bring Cycle 2 down to 1 Subcut infusion per week… stretching it out a bit and going for the full 8 Cycles. IF all goes well, then I could be on Velcade for 10 months or so… taking me into 2014. Given the history of my previous Velcade I don't expect much, if any, remission but at least I will have gained some time and perhaps we will find something as, if not more, promising to get me a bit more time. Positive thinking and watchfulness will be the key… as well as a good portion of luck. 😎
BTW – the extra 2 weeks + the GCSF, got my Neuts up from 0.53 to 2.26. I am not Neutropenic for the first time in 12 weeks and I can accept visits and go visiting… that'll do nicely. 😉
Dai.
Dear Dai
I hope it works for you again, i await your musings with interest as I start the same regime with added cyclophosphamide next Tuesday, I'm not looking forward to it, but suppose I must get on with it. I currently have pins and needles in my hands and feet and a black eye which I woke up with on Friday, just what is all that about?
Love Helen
Dear Helen, sorry to hear that you are having some difficult side effects, and Dai hope that all goes well on your regime too, my Mum was seen in clinic today her protein is down from 1000 to 11 the Consultant said, so the RCD is doing its work she has had 3 cycles so far but we are waiting for todays bloods as she is still a bit jaundiced so not sure what is going on there either but we will see, she does'nt feel well though so fatigued still, take care all San xx
Hi Dai
That's so of great isn't it :-). ? hope things go well for you with the treatment and even equally good you can see the grandchildren, do visits etc. great 🙂 why they didn't give you those gcsfs before I don't know eh?
Helen, how did you get that black eye? Glad you had a great time in Cornwall. Good luck with the treatment …..not a nice thought but let's see that mm disappear 🙂
Vicki and Colin xx
Dear Dai
I am so happy for you and Janet,I can almost see that big grin on your face.
Velcade worked well for Slim while he was on it,just tiring going to hospital, not the Velcade waiting hours ,I know your experience of Velcade is different,if you are not having it subcutaneous ,get a hot water bottle,worked wonders for Slim,before bottle,needed heat pad,15 min,then it was a lot of painful prodding.
It does sound if they are trying to knock Myeloma back and then with once a week maintenance ,until it stops working,that's a lot of time,I would be tempted to ask for a leaflet with all side effects,which are many,so you are better informed,remember Slims side effect!! Poor man was walking bandy until he told me.
Helen I know you must be feeling down about starting Velcade ,specially when you do not feel so ill,Slim was the same one minute everything showing remission expecting to be told CDT had worked only to be told Velcade was on the cards. I think we both walked out of hospital in a haze. He did find Velcade had an easy effect on his body,plus once you have had one treatment you do have more knowledge and it helps.
As for black eye have you been walking in to doors in your sleep.!!,pins and needles not great,have to boost your circulation here is we're heat and massage helps.
It's nice to have some good news. Love Eve
Dear Dai,
I wonder whether even if the Rev mightn't appear 'right' for you – if you had some with the Velcade it really might work in a synergistic way. I suppose it might be a question of funding and also of how many side effects you'd develop. Maybe your myeloma needs to attacked along a number of different pathways simultaneously. Sure Velcade seems a wonderful drug- perhaps one of the most powerful we've got for certain patients- but there has been a big push for at least two or three drug combos overseas.
Anyway, you must be so pleased to have more options. I'm glad you seem to like the steroids- I guess the increase in neutrophils is important. It does that for me too. How do you cope with steroid withdrawal?
Eva
Dear Helen,
Good luck with your treatment. I still suggest some lubricating eye drops from an optician to be used a day after Velcade when the eyes can start drying up, lots of moisturiser for your hands, perhaps an antibiotic in the house if you get an infection late at night if your consultant agrees to have one waiting for you. When I was on about maybe my third cycle of Velcade, I was happily pottering about my kitchen fairly late at night. Sudddenly I noticed a weird infection in the nail bed of one of the fingers – it was swelling fast and my finger was going purple. I knew that at that rate the infection was spreading & I shouldn't wait until morning. I rang someone at the London Cancer Centre- a matron advised me to begin antibiotics immediately. I'm sure you can get advice from the NHS in the same way if the hour is late, but it might be more difficult to access meds. Anyway,see what your consultant thinks.
As for the mysterious eye, platelets or some lack of clotting factor? Once on my myeloma journey, I had a quite severe nose bleed for three hours and then a milder one for a couple of hours longer. It was so inconvenient and I considered going to hospital but it's an eighty mile round trip and I might have been been totally ok by the time I arrived. I couldn't really move much and had to be super patient, as each time I tried to get up, I squirted blood all over my clothes and the sheets.
At the moment, I seem to have lost a sense of the boundaries of my body. I was out having a soup yesterday in a cafe. I exploded a fizzy drink all over the table and floor. I often walk past tables knocking off cutlery at random. I feel like my brain's going in some ways. I even managed to pour boiling water into the cats' food and they've been staring at me woefully, trying to tell me they they don't want stew,even if they're hungry. I'm starting a big journey overseas in the next couple of days, so I better get my act together fast.
Eva
Hi Dai that's great for you and am sure Janet is delighted. And an extra bonus you can do visits – great 🙂 Hope all goes well
Helen good luck with the treatment. Will be thinking of you
Love Jean xx
Good luck Dai.
Eye drops a great idea, don't rub your eyes and transfer bacteria…
I still have infections in both my eyes and won't be allowed to proceed to my SCT until they clear. I've had them for over 2 months.
tom
Dear Tom,
I've had to stop wearing contact lenses because of the danger of infection.
I sometimes have to use Chloramphenicol eye drops (antibiotic, not lubricant) or Chloramycetin antibiotic cream- perhaps not spelled correctly. You might need to confirm whether you're having an allergic response to something as well that's affecting your eyes. Are your immunoglulins too suppressed? Can you get help with that with an IVIG if the infection persists?
Eye infections can make me tired and grouchy.
Best,
Eva
Eva thanks for the suggestions really helpful. I'm going into UCLH today to see a doctor and will press to get an appointment with an eye specialist.
Well Dia
I think this is good news if anything it will buy you a bit of time i am glad your nuets are good and the purdah can end I have the velcade subcut once a week much less side effects PN etc after my sixth cycle UCH want me
to have velcade once every two weeks stretching it it out to 9 cycles less agressive they say then thalidomide maintenance 50mgs after that hope it works get PP results next monday so fingers crossed
Keep well
Love Jo x
Hello Dai
Its great that you can try something else. Pity you can't have another SCT. Do they not think they can harvest enough cells now. I hope and pray that the new treatment works for you. I'm due to go to Kings tomorrow for my bloods plus some injection and all being well go back Thursday for the SCT harvest process. I guess thats the easy bit.
Keep fighting.
Scott
Hi Dai
Well you are doing well and am sure you and Janet are well pleased you can now have and do visits :-D.
Am well sure your gonna crack it this time and to help you my fingers are well crossed 😎 , its good to see you getting a chance and hope that something else is on the use list soon.
Stay Well My Friend and am sure summer is just round the corner.
Tom Onwards and Upwards x
Dear Eva
Many thanks for this, I will certainly see the optician, I have a supply of antibiotics too…. An enlightened haematologist I think.
San and Jean thanks for your good wishes, I've updated my recent thread.
Love Helen
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