[PerkymiteParticipant]

Hi Helen, do you want to compare notes.

I start my third session of Velcade today. I have 20 mg of Dex and a Velcade Injection (I will find out who much today) Monday and Thursday for two weeks then I have one week off followed by a blood test and assessment on the Friday.

My Blood measurements are (were on start 2/4/13) HB (10.5)10.9; WBC (5.59) 5.50; Neutrophils (2.69) 3.5; Platelets (239) 145 and PP (17.1) 9.

Side affects: Slight constipation. A Burning sensation in my thighs (like somebody has pored acid on them) this lasts for a few moments and is totally random then goes off. I have had a lot of bone pain but I do not think it has anything to do with the Velcade treatment.

I have not noticed a drop in energy and the wife says I can still be very annoying 😀 , I just love to pull her leg or tease her (I do not think I ever forgot the fun of pulling girls pigtails at school 😎 >:-( ))

Kindest regards – vasbyte

David

[HelenParticipant]

Hi David
Yes of course! It's interesting to see what others are experiencing. I'm on cyclophosphamide 500 weekly as well as the Dexamethasone and Velcade. I've had my first 2 week cycle now and just started my week off today. All my bloods were ok, no paraprotein detected and sflc 155. I'm hoping they will drop to zero again in a month, here's hoping.
I'm not too bad, having had Revlimid for the last 18 months I've always been tired but this stuff feels rather different. I don't like the constipation already! And I've lost my sense of taste. And my skin is as dry as sandpaper, so I'm back on the moisturising trail again
Today I've been a proper madam! No patience with anyone, quickly bored and a serious feeling of irritation and a need to irrationally do things to prove to myself that I'm ok! Clinic this morning and I'm the one complaining about the chemo day unit again!
I'd forgotten how slowly the Dex settles down qnd how it can alter you mood.It will be nice to sleep properly again, well I'm hoping.
I can't believe you would deliberately annoy your wife, what on earth would you do to exercise her wrath, don't you want a safe life?
Love Helen

[PerkymiteParticipant]

I noticed on yesterdays injection that I have 2.5 mg of Velcade.

I am one week ahead of you. I wonder why some have Cyclophosphamide and not others, it must be something to do with their treatment position in the whole scheme of things perhaps, I will ask at my next assessment.

They now seem to have my bone pain under control and the change over from Loron tablets to Pamidronate infusion seem to have been accepted by my body. I think this change in medication was a lot to do with the sudden increase in the level of pain, they did warn me!

I am a real power house on Dex days, wish I had this stuff when I was a runner I would have won the Olympics! although I suppose they might have banned me!! Biggest problem is I cannot sit down for two minutes in a row he he….

I get constipation, although the Consultant asked me about loose bowls and upset stomach. My skin is dryer than normal but no real dry skin problem. I have always had very oily skin though, it gave me lots of acne as a kid.

My appetite has risen and I find I am looking for chocolate biscuits etc… I went through a short period, about a week, where everything tasted like dry biscuits but that seems to have gone this week.

Are Yes, the Old Dexattitude, when I start getting uppity Mo just ignores me she tells me. I do actually try to control it as soon as I realise I am getting aggressive. I am not a naturally aggressive man.

Sleep wise I am not doing to bad. I take my 20 mg of Dex in the morning about 8:00 am and I find this does help with sleep. I normally am off by 1100: p.m. and wake between 5:00 to 6:30 a.m.

Teasing Mo is so much fun. It is little things, good example. We have a rotary washing line. Yesterday Mo and I were hanging out the washing. I noticed she moved the line around to put on the next lot of washing. So I took some clothes and went around the other side to put them up, instead of staying where I should have done. She said you silly so and so I have just moved the line around for you, then, she realised I had done it deliberately. Not a big deal but it raised a laugh with both of us.

Kindest regards – vasbyte

David

[HelenParticipant]

Hi David
How is it going? I'm nearly at the end of the second cycle. Shockingly tired and hate the dex, living on senna and vegetables and putting weight on like nothing on earth, otherwise I'm remarkably ok.
Love Helen

[eveParticipant]

Hi Helen and David

May I butt in here,as every one knows bowel movements are very important to how you feel on a day to day bases,I can think of nothing worse than Senna unless you are really bunged up, Movicol is a must at first you might have to take it a couple of times a day,but it does make the gut move more naturally .then you can reduce it to one a day.

Bowel movements are so important,just to stop feeling lethargic .Eve

[HelenParticipant]

Hi Eve
Sadly the codeine and the velcade together have caused terrible trouble but movicol is horribly fierce and I only use that as a last resort, so far the senna is the only thing that seems to allow me to function …..eeugh, enough of this:-P
Love Helen

[PerkymiteParticipant]

Hi Girls, I go for my pre-assessment this Friday 10:15 a.m. So no news as such. I feel good the pain is now under control, although it still troubles me a bit a night when I try to get up for a pee.

I am having the same problems with bowel movement. I take Laxido when needed, just using one a day at the moment (making sure I am at least 1 1/2 hours away from any tablets I have taken). But, I have to say a friend of mine put me onto 8 prunes prior to bedtime and that does seem to work. I use Tesco's tinned pitted prunes 😎 I now regularly take four with my bran flakes and if I have not been 8 at night. If that does not work I resort to Laxido.

I will post Friday as to how my pre-assessment goes.

Kindest regards – vasbyte

David

[DaiCroParticipant]

Hi All,

I am on my 10 day rest period between Cycles 2 & 3 and I grow stronger every day. If I follow the course of events as between Cycles 1 & 2 then I will virtually bounce into the clinic new Monday. Of course, for me, I will be wiped out between infusions mid-Cycles… complete with mild confusions and absolute weariness. 😛

The plan for my Velcade Adventure is to stretch the treatment out for as long as we can… but this depends on my Light Chains dropping and we won't know if this is the case until next Monday. If the Light Chains have dropped… then I will move onto a 'Once Weekly' set of infusions… stretching each Cycle out from:

[b]2 x Weekly infusions x 2 + 1 x 10 day rest period = 24 Days.

To:

! x Weekly infusions x 4 + 1 x 10 day rest period = 38 Days[/b]

I have had 2 ordinary Cycles to set me up and now, hopefully with a successful decrease of Light Chains, I will continue on the above treatment formula for the next 6 Cycles giving me…

[b]! x Weekly infusions x 4 + 1 x 10 day rest period = 38 Days x 6 = 228 Days 🙂

instead of the normal:

2 x Weekly infusions x 2 + 1 x 10 day rest period = 24 Days = 144 Days An extra 84 days.[/b]

While your treatment is aimed at remission, mine is aimed at life extension. [i][b]'Every Little Helps[/i]!' [/b]8-)

Dai.

[eveParticipant]

Hi David

As soon as I read the word prunes this vision of prunes and thin custard from school days came in to my head>:-(

But you are right they work wonders,at the moment Slims taste is little and often, eg smoked salmon and scrabbled egg for breakfast,the dog Is quite partial to it as well,;-) so nothing is thrown away…

I think eight prunes would be 3 meals for Slim,have to start looking up some ways of serving them.Love Eve

[PerkymiteParticipant]

Hi all, Had my Third Pre Assessment today. I still did not get a PP measurement!!!! The Consultant just said the Lab? must be very busy and they (the Consultants) do not need the actual PP measurement unless my blood indicators are conflicting with each other or there is some other anomaly. Clearly my Myeloma is not going to go to ZERO and the best I can hope for is a figure of around 2.5 for awhile (partial reemission as followed my SCT).

Although my blood HB is dropping now 9.7 (were 10.5) they do not feel that they need to intervene with a transfusion at this stage, might next assessment ? wait and see. My full results for the technically minded are; HB 9.7, WBC 6.12 (was 5.59), Neuts 3.78 (was 2.69) and Plats 129 (was 239).

Generally I feel well with minor side effects that come from the lovely Dex and Velcade. These include, bags of energy to no energy, some constipation, a little bit of Dexattitude and my taste buds are not to clever (OK on strong cheese but milder foods tend to taste of bran flakes) otherwise I am going along fine.

Kindest regards ? vasbyte

David

[eveParticipant]

Hi David

All sounds good to me,will not touch your bloods unless they fall below 8,the rest plates and neuts,cannot complain,I question a little dextitude, lol,Slim believes he is reasonable on it too. Pigs might fly.

There again I am just a carer.Love Eve

[PerkymiteParticipant]

Hi Eve, ok you have seen through me "a little bit of dexattitude" was from my perspective, not quite Mo's I think 😀 😀

I get the "got to sleep" between 2 and 4 p.m. as well Helen.

Interesting one on "Care". The Consultant has told me I only need a blood check two days before I see her on the third week of cycle four. The Staff Nurse who treated me today decided that I would have a blood test next Monday, week two of cycle four. She said she had been looking at my blood readings and felt the HB/Platelets could be a problem and it would be best to check them earlier and if I needed a transfusion they could fit me in anytime. I have got to watch my energy levels (which are good at the moment)and report straight to the Day centre any problems. That is the second time, in my treatment, that a Staff Nurse has decided to overrule the Consultant "in the interest of the patient".

Now that is what I call [i][b][u]CARE[/u][/b][/i]. I feel very well looked after by one and all at the Beacon Centre. And, that is why I feel for you and Slim. It should not be a battle, move to Taunton?8-) I was particularly pleased with my Neuts at 3.75.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Finally got my Para Protein reading 8.1 pp. So that is down from 17.1.

I am told the big jump comes in the first 2 cycles and then it slows down. So, my hoping I will get to around 2.5 might be a little optimistic but you never know. I am not really sure how many cycles I have to go, I will ask next time and I will ask if the plan is that I go onto maintenance Velcade I have heard one or two of you mention.

Kindest regards – vasbyte

David

p.ss Yes, it is a Dex night 😀 😀

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