[eveParticipant]

Hi Everyone

Apprehension was right,Slim after starting trials in February and having a few ups and downs on the way finished 6 cycle two weeks ago,and we were left in limbo not knowing what the next path he was going to take.!!:-(

Had meeting 2 weeks ago,not going to recommend SCT as holes and blood clots on lungs!!!,awaiting on results,bloods ok kapper light chains ok,waiting on bone marrow byopsy ,results a bit of a shock to team,they had not improved had increased % wise to 80%.In the future the only way they will be able to know if drugs are working will be bone marrow results!!! bit concerned that this has taken 6 months to find out!!MRI scan to be done,to see how much damage there is.
Called into hospital yesterday,told results and blood taken,start treatment today:-P
Velcade starts today,have been trying to read up all I can and looking at post on this sight,apprehension does seem the right word!!!
would be grateful for any advice,ask about a picc line as Slims has to sit with heat pad on arms for 15 min,before they attempt line,also have been told 9 oclock for bloods 1oclock for injection twice a week, 2weeks on 1 week rest.looking at full course,.any suggestions would be grateful:-)
Love Eve

[DaiCroParticipant]

Hi Eve,

My Velcade experience has had its drawbacks in terms of side-effects but to be fair it has worked very well… spectacularly well in fact, in the reduction of my kappa light chains… which is the primary purpose after all. I went from 246 to 13 after 2 cycles and 13 to 11 after the next (under 18 is the Complete Response marker so the slow down to chipping away at the rest is to be expected, if slightly frustrating). My consultant is on holiday and I will be away when she returns, so we won't meet up until the 12th September… where I hope to find out about progress from cycles 4 & 5.

My consultant wants me to have all 8 Cycles… aiming to knock the KLC's down to somewhere near 0… remembering that I only had one chance at SCT's so this is for a bit of remission for me (6/12 months… and I'll take it). 😎

Finding the right dosage was the key to creating an efficacy/quality of life balance and I think that they have just about found that now. Hopefully Slim will have a gentler start than me but saying that… it might have felt a tad brutal but it more than did its job.

Velcade is a magical drug and if it does its job while allowing Slim some time to recover as well then it will have served a dual purpose.

The beginning of each Cycle is time consuming… the consultant signs off the dose at the consultancy (say 10.30) for the cycle and then the pharmacy makes it up… there is usually a 2/3 hour wait (we usually go into town for a couple of hours… well, Janet does, while I curl up with a book (the curling bit not always voluntary but there you go)… then the procedure takes place about 1pm (ish). The following three injections of the cycle are pretty quick 1/1.5 hours tops… so its only the first one of each cycle that is time consuming.

Like many others my veins are 'difficult' in the extreme and I struggle each time… but the nurses on the Day-Care Unit are great with the hand-warmers etc., (Janet makes me wear a thermal glove from the house to the unit) but I am minded to ask for a Picc Line when I return from holiday up until the end of treatment because the back of my hands are two large patches of purple through overuse and creativity.

Please ask if there are any specifics you want to know… I will help if I can.:-)

Best wishes to Slim.

Dai.

[gina45Participant]

Hi Eve i can only go off my mum, although she isnt on any treatment at the moment because of fluid on her lung. Mum only had one week of velcade and her proteins went down 10%. The only side effect she felt was fatigue. She went in and had fluid put in and then the vecade. The reason they put of mums velcade is because her kidney function had gone up from 150 to 157. So its swings and roundabouts really. I hope that you and slim are ok and the treatment does him good, please keep in touch and let us know.
Gina xx

[brochoParticipant]

Hi Eve well at least you have a plan now and the waiting is over I always find waiting makes me more anxious Velcade is a great drug and works well for a lot of people The first time I was on it constipation was a big problem but the dose was lowered and I took 3 forms of laxative every day Unfortunately the second time I was on Velcade it was discovered after 3 months it had not worked for me One thing to watch out for is expecting to feel better on the rest week , the first part of the week can leave you feeling exhausted but it does ease over the week I think you need to tell the nurses of any little changes especially any tingling etc in feet or hands so they can alter the dose if necessary and avoid PN . I did get some PN in one foot but Gabapentin eased it and it went about 6 months after treatment finished PICC lines are brilliant !! I have had 3 now and wouldnt hesitate to ask again if I was on treatment , like Slim and Dai my veins are shot The procedure to put it in is simple and just a slight sting nd taking them out is completely painless They can be used to take bloods and any IV meds So push for one !! Good luck Slim those numbers will soon come down love Bridget x

[BADGERParticipant]

Hello Eve

thats awful news you were quite right to be apprehensive it must have been a gut feeling you had I really hope velcade works this time for him have you asked if he can have the via injections instead of having a line fitted I know some hospitals are offering this now regards Jo x:-P

[eveParticipant]

Thanks Everyone for your replies
We got there at 12.30 for a one oclock appointment.As the bloods were taken previous day ,Saline drip first injection into it then more Saline sounds easy.left hospital at 3.30.Slim had to take tablets on same day so dex taken on the way home,he has been up most of the night and this morning more dex.so full of energy:-).I look like death warmed up:-P disturbed me every two minutes!!!!Have to keep reminding him the dex is working great!!:-P

Spoke to nurse about picc line who then in turn told Slim,she did not think he needed it,but it was his body so up to him!!! guess what,he is not having it,!!!Last time we went heat pad 4 tries 2 nurses before line went in,came out saying{by god that hurt}typical man did not tell them,so no picc line.

What all this means is every cycle we will go in for 9 for bloods come back at 1 o,clock for injection,then wait for drugs ,take dex as soon as possible and be full of energy,( think i might have a word with boffin Craig) this is were we need some input!!!!
Dai as 8 cycles is the order of the day i think i will have lots of questions you will be able to answer,but for now,just watching for side effects,at the moment its just dex,and picc line that is causing heated discussions 😛
Thanks everyone for your kind support Eve

[DaiCroParticipant]

Hi Eve,

Quick question… what strength of Velcade have they started Slim on?

I started on 2.79 for the first two Cycles… 2.1 for the third and 1.49 for the fourth and fifth… each reduction being necessitated by side-effects… something to watch out for and to consider. I'm glad they started high because it obviously worked in bringing my kappa light chains right down… but since the reductions the drop has slowed dramatically – so it is worth sticking with it as long as possible.

Dai.

[MinParticipant]

Hi Eve just a quick one.
Get him to take the Dex 1st thing in the morning before he goes to the unit, It might have worn off by bed time!
love
MIn

[brochoParticipant]

Hi Eve I just read your post and am now hopping mad , alright I am on a dex comedown too!! How can a nurse come out with such a c**p comment about the PICC line and really what is her opinionin the scheme of things!!! I thank goodness the team at UCH look at my overall welfare first and foremost , whether it is side-effects or the extreme discomfort caused by trying to access veins which are non-existent after years of toxic treatment!! I can honestly say they have never hesitated to find a solution to any issue I have raised and whilst they are very good at treating myeloma with all the latest treatments their first priority is my well-being. I would love to be a fly on the wall when you are having those heated discussions!!Tee-hee!! Good luck I am sure you will get Slim the PICC I hope they dont take too long !!Right rant over now I am going to find a happy song to bring me down off the ceiling lots of love Bridget x

[mhnevillParticipant]

Hi Eve

I join everyone else in saying I do hope the Velcade works for Slim and without any serious side effects.

Hang in there through the Dex highs and lows – you are a wondeful carer!

Very best wishes.

Mavis

[eveParticipant]

Hi Everybody
Min the problem with dex is we do not have it to take,in the morning,trial day one take vcd,will not give us dex until blood results come back .so 9 for bloods 1 oclock for injection then,rest of meds sent for got out at 3-30 in afternoon.Stupid i know,were did commen sence go!!!!!!
Bridget I asked about picc line after reading up,and as they have had problems finding veins,and realising if he has problems with fluids his veins will be none existences,the nurse made the comment [,she did not think it was necessary ],so Slim has chosen not to have it done,I disagree completely,this was the first time she had seen him,Slim has chosen to take her advice,but if in the process of this treatment if they have any problems with his veins,I will remind her about that conversation!!!

Dai I do not know what strength Velcade he is on,as all of this was being done as nurse was telling him,he did not need picc line,we go again Friday for bloods and injection,thank god we do not have to wait for tablets,the marathon hospital job will just be at the start of each cycle followed by a dex night,as he has to take them same day.basically it means vcd does not start till one o clock!!! also with cyclophoshamide,which he would normally take at 7 in morning because no food 3 hrs before and no food only water 1 hr after has to be taken on first day,so food and fluid except water has to be curtailed for 4 hours once the tablets are given to us.
does that make sense Dai!!!!:-S
Spoke to nurses about it,and they agreed,but said this is trials and they have to be followed,8-) :'-(
Jo is this just an injection without the saline drip ??
Gina Slims getting heavy doses of proteins,steak steak and steak,feeding him up before he looses his taste for food.:-)
I am getting a swear box,save some money,how are you getting on with your sexy sock, LOL my mind boggles when I think about it,I can remember Slims when he had the hip replacement,anyone who heard us must have thought rude things eg.go on get it in there,push push it in,we would end up laughing so much,we could not get them on,and Slims always had skinny legs.
Love Eve

[BADGERParticipant]

hi Eve

At UCH they offer the injections which go just under the skin subcutainsly
(sorry wrong spelling i am a terrible speller) I know two people who are having it that way it has much less side effects and much easier to administer you should look it up I know you are good at doing that

Regards to Slim
Love Jo x

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