[foxy555Participant]

Thanks Vicki

Good luck for tomorrow, let us know

Ann and Pete

xx

[foxy555Participant]

Hi Vicki

Just a quick hello! How is Colin …. and how are you?

No change here, other than Pete has developed quite a 'firm mass' – about 2" wide, on his stomach, he says the symptons are probably like a 'hernia'. No pain, but uncomfortable -he has never had a big tummy, so it is getting him down! Any ideas?? I know constipation is a side affect of CDT, but he is going, every 3 days, with the help of strong laxatives!! Is this right, are the laxatives damaging him in anyway??? I have told him that we must ask all these questions on Tuesday at the consultation.

Regarding the taste buds, I cooked a madras curry at the week-end, Pete could taste the heat/spice, but not the food, if you know what I mean.

Sorry, I have had a good old moan tonight, but needed to get it off my chest.

Speak to you soon Vicki, let me know your news.

Take care

Love Ann and Pete
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[foxy555Participant]

Hello Teresa

I just wanted to see how you are. How is Peter? .

Really hope all is well in Canada and that you are getting better weather over there than we are here!

Take care and lots of good wishes

Love

Ann
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[foxy555Participant]

Hello Helen

Thank you so much for taking the time to reply, your information is so helpful. The feedback on this site is amazing!

So pleased you had a good holiday.

Keep well and many best wishes

Love

Ann

[foxy555Participant]

Thanks for that Vicki, I told Pete I was buying him some pineapple tomorrow. He said, I don't like pineapple! I replied, well if you can't taste anything you won't know you are eating it, will you!!!! LOL, men eh!!!

Really good info Vicki

Talk soon and best wishes to you both

Ann

xxx

[foxy555Participant]

Hi Vicki and Colin

Lovely to hear from you and what great encouraging news for Colin! As you say, after he has been so poorly during this cycle, it must have been such a relief for both of you. Colin must be on his 9th cycle now?, Pete will start cycle 3(CDT plus monthly bone drip at the end of June) and so we have still got a long way to go. Must admit they have not mentioned 'light chain' measurements to Pete yet, but the results were not there on his last consultation and so hopefully when he goes again at the end of the month, we might learn more about where he stands.

Pete had just the one dose of radiotherapy last week on same day as his bone drip, the pain is 50% better, which is great, but he still can't swing a golf club! We are both a bit sad as well, as we should have been flying out to Turkey tomorrow,36 degrees!!! We certainly could do with some sun!! I think everyone could though, this horrid weather is so depressing!

Also, I think I mentioned Pete's chest pains. The consultant said she was almost certain that it was connected to the myeloma, but after further cardiology tests, he now has to go in to hospital for a angiogram a week tomorrow. Another blooming worry!!!!

Still no taste buds, apparently everything tastes like sawdust. I have told him to ring the doctor to see if there is any remedy, but he has'nt.

Pete hopes that we can get a weeks holiday in Spain in July, the consultant said it would be ok, but I still feel abit uneasy about it! We still have the outstanding insurance claim for Turkey as well. They do make it difficult for you don't they? Despite the myeloma consultant filling in a very detailed medical form, they rang Pete the other day saying that it had to be completed by his own doctor!! Also, although we sent them the cancellation advice from the travel agent, they now want a copy of our original booking form! So now starting all over again – you certainly don't need the added stress. We have never claimed anything in our lives and certainly did'nt expect this much hassle over what we thought was quite a straightforward issue.

Ok Vicki, I have had my moan.

Once again, really happy to hear your better news!!

I have been reading the posts each night, just to see how everyone is getting on, some happy and some not so happy reading!

Speak very soon

Take care both of you

Love Ann and Pete

xx

[foxy555Participant]

Hi Vicki

Oh so nice to hear from you! I said to Pete, I thought something not right as you had'nt posted recently. So sorry to hear that Colin has not been well! As you say, it is a blooming roller coaster, every day is so different. One day you feel optimistic, the next day you come down with a big bump!!

Many thanks for the info on taste buds,(thanks Tom and Jean also) really helpful- Colin sounds just like Pete, he used to love his wine and a pint and his savoury bits, but now he does tend to eat sweeter things!! I was really getting concerned (nothing mentioned in side effects), but you have all put my mind at ease.

Pete had radiotherapy on Wednesday plus bone drip. (Like Colin he only had to have the one, really cannot get my head around all of this)- why can't they just 'zap' it completely? I think he looks poorly, still in pain and is quite grumpy at times. Sometimes I feel so useless and I know Pete gets fed up with me saying "Are you ok, how are you feeling etc etc!!!"

Vicki, I do hope you have a better week-end and best wishes to Colin. Make sure you get rested as well, but you won't be sunbathing in the garden, thats for sure!!! British Weather eh!!

Talk soon

Love Ann

xx

[foxy555Participant]

Hello everyone

Just a quick one! Has anyone experienced loss of taste buds with CDT. Pete literally cannot taste anything! We have read the leaflets accompanying the tablets but cannot seem to find anything relating to it.

Thanks and best wishes to you all

Ann
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[foxy555Participant]

Hi Vicki

How did Colin get on today with the consultant?

Love Ann
x

[foxy555Participant]

Hi Vicki and Colin

Thanks for your post, sorry to hear Colin was not feeling too well! I do hope that he is feeling abit brighter!!

Your info was great, really helps. As I said previously, you are in abit of a daze when you are with the consultant and don't always ask the questions that you intended too!

Pete went for his radiotherapy assessment on Wednesday and only has to have one blast of radiotherapy (good news, we were originally told on Tuesday that it would be 5). Still has'nt got the appointment through, but I should imagine that it will be next week. So excited that, hopefully, that Pete will get some release from this pain after nearly 6 months!!

If we don't speak before the 7th, best of luck.

Did you read Dai's post? so pleased for him.

Take care both of you.

Ann and Pete

x

[foxy555Participant]

Hi Dai

First of all, thank you for your post to Pete and I, very informative, and I really do appreciate you taking the time to reply.

Really pleased that you are a 'happy chappy' today!!!

Take care

Best wishes

Ann and Pete

[foxy555Participant]

Hi Vicki

Thanks for your reply. It is all so confusing, is'nt it??, all these names. As usual we did'nt ask all that we wanted to, but I think it all goes a bit of a blur, the minute you walk into the consulting room. All they said about Pete's blood was that it was good, but they had'nt got the light chain blood results back yet!!!

You don't need to reply tonight Vicki, but how was the radiotherapy for Colin?? Did he suffer from hair loss? I thought it was only from Chemo treatment, but Pete thinks differently. Pete's course is for 5 days. Any advice would be welcome.

Have a good evening.

Love Ann

xx

[foxy555Participant]

Hi Vicki, Teresa and all

Pete went for his consultation today. Still confused!! but at least the news was a bit more encouraging. The MRI showed up a mass of myeloma on his spine (we actually saw the scan). This finally confirms the cause of the back and rib pain. The consultant was confident that with radiotherapy (Pete goes back tomorrow for a pre-assessment and treatment will start next week) – that they can relieve the pain. Great news!! I am really impressed that they are moving so quickly They have now introduced a new word to us – 'light chain myleoma'. The consultant was also confident that his chest pains are associated to myeloma and NOT his heart, and so again, another sigh of relief!

I hope you are all ok, best wishes

Take care

Love Ann

xx

[foxy555Participant]

Hi Vicki and Teresa

We did'nt have a good day yesterday either!! Pete really felt rough, the pain is still going around his body, each day, different spot!! He is now suffering with chest pains (has got a spray for under his tongue) but has to see a cardiologist next week! I hope to god it is connected to myleoma and not something else!!! He was in bed at 4pm yesterday (on such a beautiful afternoon and bless him, he just loves the sun so much), he looked so grey and was in so much pain – I was so scared!!!

Today he is so much brighter, we had friends round for lunch and he did have a few glasses of wine, every day is so different!!!

Vicki, like you, I did the gardening today, Pete could'nt even attempt it (not that he did it when it was well anyway, always off golfing !!!(LOL).

Teresa – Hope you and Peter have enjoyed your week-end. Pete also gets bad tempered at times, more so now!!

Will post again after Tuesday. Pete's first review after starting medication and MRI results, feel sick even thinking about it, but I appreciate that both of you have been through this so many times.

Take care both of you!

Ann
xx

[foxy555Participant]

Thank you so much David

As usual, you are so very helpful and thoughtful!

Best wishes

Love

Ann

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