This topic contains 140 replies, has 26 voices, and was last updated by 
dee4894 11 years, 5 months ago.
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
Hi Ann,
So far so good. I know what you mean about feeling useless!. I too ask Colin all the time if he is ok (and I expect he gets fed up with that too).I find it hard sometimes if Colin is very quiet, mainly because I think he might be worrying or sad. With regard to grumpiness think that might be the combination of dexamethasone and generally being fed up of being in pain and I'll (Colin can be like that too). With regard to looking poorly Colin seems to have a sallow look sometimes, or goes the other way and looks really flushed. One thing that he still is, is very very tired. I hope that is normal but like you I worry all the time about what if, what if, what if.
The weathers been good today and I have been able to spend some time in the garden! (no sun bathing ha ha).we did do a little bit of shopping as well but for a very short time as he was completely wiped out. Not sure how Peter fairs but Colin does seem to lose energy quite quickly at the moment. Also he seems to be fed up more, but then I suppose thats because he's been I'll for a while. Wish someone would come up with a cure quick!!!
Enjoy your weekend if you can
Vicki and Colin x
Hi ann and Peter,
How is it going for you guys, not seen any posts so a bit concerned?
A bit of good news for once. Colin and I went to see the consultant today. They have delayed his treatment one more week, neutrophils still low at 0.54. They are considering options to reduce his revlimid dose next month so we shall see, another appointment Friday week. However the good news and we were both very very pleased. His light chains have come down from 1300 to 850 (bearing in mind they started at 31000). His paraprotein has come down to zero! They are doing another test which I can't remember the name of but it's more specific to detect the little numbers of pp that might be knocking around. They said today he could have the SCT now but what they want to do is carry on a bit to see if they can put the mm into complete remission before they go for SCT. That's really great news considering he has really not been very well this cycle at all!
Hope Peter is finding some foods and Tastes that are more appealing to him. What cycle of treatment is he on now? How are you coping ann. I had a really bad week last week and was really really nervous before we saw the consultant today. Apprehensive about being close to SCT but if it's all worth it that's great 🙂
Take care and enjoy the forthcoming rain x
Vicki and Colin x
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
Hi ann,
First things first you are right about the weather it is tipping down here and I think it's forecast for tomorrow as well! Turkey must seem a very long way away at the moment!
I can understand you might be worried about going to Spain but read the posts from perkeymite David either on your string or mine. He gave some really useful tips on travel. That said I don't think we've travelled for a holiday out of the county yet! Colin works in Portishead and that's as far as we've got!
I hope the heart issue sorts itself out, like you say one more thing to worry about. The travel insurance thing is laughable. I think there is an info guide on travel or travel insurance on this site so you might get something useful or some advice from them? Re the taste I am told that pineapple is very good at helping the cells in the mouth to recover following treatment. What about trying some of that? I can understand how stressful and pressurised things can be. I had a really anxious week last week so this news has been a real lift for both of us.
Take care ,and good luck with the next phase of treatment.
Vicki and Colin x
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
Hi girls
Just thought I'd add my 10 pence worth here. I've been on revlimid for some time and my sense of taste is poor now. Lots of things taste wrong and a few even burn my mouth, alcohol feels like it has chile in it and all citrus except orange are painful to taste. Lamb has a weird taste and spiced food is also uncomfortable after a couple of mouthfuls. I don't think your respective chaps are trying to be difficult, but it's hard work and quite soul destroying when everything tastes odd. It's probably easier for me too as I'm in charge of catering in our house, I only had a week off cooking after coming home from hospital, (cooking not husbands strongest skill! ) so I get to pick the menu. Lots of chicken, more dairy than before and more shepherds pie etc. I suppose I prefer what could be called traditional British food now, prevously we ate anything. I drink a lot of peppermint tea too which I hated before but now seems to be a good taste.
I asked why the strange sense of taste but no 'known' reason, some people worse than others, might come back etc etc. Do keep asking though in case something comes up. ………….. But it might be you drinking the grapefruit………..:-P
Love Helen
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
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
x
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
x
Hi Ann
I dont know if this will help you but my Mum also developed a shelf like mass around her abdomen whilst on treatment (RCD) you could see it and also feel it when you rubbed your hands down her tummy area. She said it restricted the amount of food she ate – so little and often was the order of the day. She said sometimes she felt so full she had difficulty drinking her quota of water and felt like she had to stretch herself out to get it down, or sometimes stand up! Good news is the shelf disappeared after treatment finished and she back to her old self again.
Love Alison
My dad, aged 56 (57 in July) was diagnosed with Myeloma stage 3, recently.
He was told many things before cancer.
Trapped nerve > chest infection > shingles > enlarged organs > myeloma > lymphoplasmacytic lymphoma > now myeloma again.
He's really sick, and I'm terrified. He has long hair and a beard and I've never seen him without it and when he has chemo (though I'm not sure he wants it) he'll most likely lose it. Possibly the worst thing I am able to think about right now, because if I think anything close to not having him around, I will crumble.
I think I just need to know what's going to happen and about chemo (though I know each drug and person is different), etc.
– Dee
*edit*
Also, he had symptoms of:
> Severe pain in rib area (it was thought he had fractures in ribs 7&8 but they can't make up their minds)
> Back pain
> Pain from the 'grossly enlarged' liver (and spleen, etc).
He currently has all of those, plus:
> A possible sternum fracture
> Vomitting (though only bile)
He goes from one extreme to the other with blood counts and levels of calcium.
Also his kidneys are only working at 20%.
He's losing weight from lack of food and vomitting.
He was readmitted last night until they find good medication for pains, sickness and chemo type ones, also to find out if he has fractures.
They say his bones aren't looking bad, which is honestly the only thing whic his good about this, so it seems.
Hi Dee
I know all this is worrying,and you will continue to worry,but take some deep breaths,and think I can do this,and the calmer you stay,the more help you will be to your Dad.
Right now your Dad has a lot of the symptoms,which are not very nice,the first thing they will do is control the symptoms,stop Dad being sick,and help him regain some energy.Then all the test begin.
A lot of Myeloma patients have fractures,plus lesions and damage to different parts of the body specially if it has not been caught early,
The only way of confirming Myeloma is a BMB which is done in the hospital.
Your Dad is starting a journey,which we are all on,either as patient or carer or family or friend.
Things seem terrible at this moment,but they will get better,take one day at a time,and start learning about it,treat it as a learning curve and you will not be so afraid for your lovely Dad and it turn will be able to help him.Eve
Dee i have just looked at your profile and noticed you live in South East,were about are you and which hospital do you attend,I live SE Kent
Thank you for the kind words, they mean a lot. It's helpful to know that there are other people who are in the same or similar situation. I'm being as strong as I can; we are a close family, but not the hugging and "love you so much" type. Just kind of sensible and quietly supportive type I guess.
My dad is in the Medway Hospital (which seems to be the worst place ever) and we live in Medway, Kent. What about you?
– Dee
Hi,
I am on cycle 3 of 5 CDT and my taste buds are not working either. Also I have not felt hungry, but am eating well. I find drinking 3 litres a day a bit hard, But am managing it.
Tina
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