[KeithH17Participant]

Hi Guys,I just wondered if any of you have ever experienced this before?
I have just completed the first of 8,cycles of Velcade after going into relapse.
As yet the side effects have'nt been too bad but for the last week or so I have developed a very strong salty taste in my mouth.
It is very evident first thing in the morning and also last thing at night.
Just before this started my general taste did seem somewhat different being less sharp as it used to be.
I have always been very strict when it comes to brushing my teeth and use a mouthwash everytime but this taste still persists.
I don't see it as a listed side effect of Velcade so I wondered if anyone else has had or heard of this problem.

Keith.

[brochoParticipant]

Hi Keith thats a strange one ! I didnt have anything like that on velcade , mind you I wasnt on it as long. I always find dex is the main culprit for taste changes but I would have expected that to be from the outset . Hope someone else can help love Bridget x

[DebsParticipant]

Hi Keith,

I'm not on velcade but I would describe the taste that I get on revlimid/dex/Cyclophos as being like sea water and quite salty. Even glasses of water taste of it??

Do you take the velcade with anything else? Someone else hadn't thought of it tasting salty when I mentioned it and then realised that was exactly what it was that they couldn't put their finger on!! I just wonder if it is the dex that does it, if you're taking the two together??

Debs

[KeithH17Participant]

Hi Debs,I take the Velcade with Dex but as I took Dex with my original treatment(VAD)and did'nt notice a Salty taste I put it down to the Velcade.
Of course it could be the Zometa which I now have infused at the Hospital once a month.
One things for sure…I don't like it one bit!

Keith.

[DebsParticipant]

Hiya Keith,
Now it could be the zometa I suppose…I have that too! I'm with you about not liking it. The first month, it put me off my food….hated the fact that everything tasted the same…even the glass of champagne I tried!! But since then it's done the opposite….on my quest for normality I eat and eat and eat and now I'm becoming the size of a whale!! So if you find a solution for it, I'd love to hear it!!
Let's hope someone on here has an answer for us before I end up beached!!!

Debs x

[KeithH17Participant]

It's the same with me,everything tastes much of a muchness.
I noticed it within a week of starting Zometa so it looks the likely reason.
My appitite is too good if anything but not really enjoyable.
I totally abstained from Alcohol during my last treatment and have done so this time also so as to give the drugs a chance to work.
I really enjoy a good red wine but I can always play catch-up when this horrible disease is kicked out of my system.
I've found a couple of decent non-alcoholic wines…well I say decent maybe pleasantly acceptiple would be a more accurate description.

Take care Debs…Keith.

[KeithH17Participant]

Hello hooray it's gone……..

Now I can taste proper,well sort of.

Keith.

[PerkymiteParticipant]

Hi Keith, do you know why it has gone or has it just gone of its own volition?

kindest regards

David

[KeithH17Participant]

Hi David,well I can't take any credit for this one.
It was there before going to bed and gone the next morning.
I'm pretty sure that the Zometa was to blame rather than the Velcade.
I'm due my monthly shot a week next Monday so I only hope it does'nt return after the injection.
When I go to the Hospital on Friday I will mention it to the Nurse.

Thank's David.

Keith.

[GayeParticipant]

Brilliant that it has gone Keith – I hate drugs when they affect my taste. Whatever you told it to do it seems to have taken notice!

Love, Gaye x

[DebsParticipant]

Mine has come back Keith….just as I have gone back on the dex…the good news is it's stopped me picking this time, so perhaps the beached whale effect will calm down!!!

We'll have to keep an eye on it and work out what it is exactly that is causing it 🙂

Debs x

[KeithH17Participant]

Hi Debs,I start my second cycle of Velcade+Dex on Friday after 10,days rest.
I have my next shot of Zometa on 14th Feb so I'll be montoring the situation to see if that might be the problem.
Either way I'm determined to get to the bottom of it.
I'm also going to have a chat with the Nurse when I go on Friday.

Take care…Keith.

[keenParticipant]

Hi Keith, so glad yor salty problem is resolved. How are you after your Velcade? I have just had the first of my 8 injections, so far, so good. Am hoping you have gone straight into remission. Love Sylvia

[KeithH17Participant]

Hi Sylvia,Yes the salty taste went after 5,days and I've come to the conclusion that the Zometa is at the bottom of it.
I have my monthly shot of Zometa next Monday and I'll be looking to see if I get the same reaction again.
I am now onto my 2nd of 8,cycles of Velcade,having had the 2nd of 4 injections yesturday.
The next one is on Friday and I complete the second cycle next Monday.
They can usually tell after 4,cycles if the drug is working so here's hoping.
At the very least the pain has gone and after 8,weeks of it that's a massive bonus.
The side effects are nominal with the usual waves of fatigue.
Bloods are holding up although Platelets have gone from 180-130 in 4,weeks
which is to be expected.
I've been told that as long as they are above 75 then there's no need for transfusions or a reduction in the dose of Velcade.
Hope yours goes well for you too Sylvia and don't forget to keep us posted.

Keith xx

[MinParticipant]

H Keith
Peter always found that his platelets had recovered in the 10 days off period, and on the one occasion that they did not he simply missed one injection of velcade, until they had recovered. Hopefully you will have made that recovery whilst you have had your rest.
Min

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