Hi Vicki
Yes another week!! – Cannot believe Pete is only just finishing week 3 of his first cycle – it feels like an eternity already and I do realise that he has got an awful long road ahead! (Colin is on his 7th cycle) – it does get better does'nt it????- I think I know the answer to that one!
One question though, you say Colin is on his 2nd lot of Dex, did'nt he take it from the beginning??. As I posted to Teresa, alot is said about side effects from this drug, but as Pete takes the whole dosage once a week, I am interested to know more.
Pete sees the consultant again on Tuesday (monthly check?) and he gets the results of the MRI as well.(Pete as usual is not saying much about it)- I don't know what to expect. Does Colin have to see his consultant on a regular basis? Pete feels quite rough again tonight, the pain has moved again, it certainly likes to travel!!!
Will let you go, hope you are enjoying this glorious weather! Pity we have to work!
Take care
Love
Ann
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Hi Teresa
Not too bad, but dreading Tuesday, Pete goes back to the Hermatology Clinic for his first appointment since starting the medication. He will start week 4 of the first cycle this coming Saturday. Also he will hear the results of the MRI, I keep thinking, please don't find anything else!!! Don't really know what to expect. Just a quick question! – I read alot about the side effects of DEX and you mentioned them again in your post, is it the sleeping issue? Pete has had a few side effects, but I must admit he sleeps really well, albeit he has to go to bed early.
Have also noticed over the last couple of weeks, that once Pete takes all his pills on a Saturday, he gets a lift and the pain does ease a little, but as the week progresses, ie tonight and Friday, he starts feeling pain in different zones in his back and ribs (Well it had already started, he is feeling rough tonight.) The discomfort certainly likes travelling around his body!!! We shall have alot of questions to ask on Tuesday!!!
Take care both of you
Best wishes
Love
Ann
My sister's friend is still undergoing tests – very strange that they have not come up with an official diagnosis in all this times, lets hope it is not the dreaded MM.
Hi Vicki
Hope you and Colin are well. Thanks for the last post, really good and positive. I did say to Pete that I was going to give the forum a break, just felt I was being negative all the time and not being able to help other people because Pete so newly diagnosed. Anyway, after reading your post and god bless, Antoinette – only 39 years old and then reading about Teresa's husband, felt so sad, just had to join in again.
Like Colin, – Pete does'nt visit this site, I tell him what I write and then I give him the feedback!!
Pete takes his CD all in one go, 20 tablets every Saturday and it does give him at lift!! Still cannot understand why others take them on a 1.4.8 day cycle. Well I suppose the docs know what they are doing.
Just a quick story. My sister's friend has been having bone problems for 6 months (constant pain walking, been off work for 6 months etc etc) – still no confirmation and still undergoing tests, but she said to my sister just in general chat- they did mention something called myeloma'!!! My sister just froze she did'nt feel it was her place to tell her anything!! She is due to get married in June.
So despite what they they say, Myeloma is not so uncommon!!!
Take care both of you
Love
A
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Hello Teresa
Just looked up your previous posts and now realise what you are going through and what your circumstances are!! Bless you!! – that you took the time to acknowledge my comments and offer really good advice.
You sound so brave. You did make me laugh however about the swear words!! – I thought it was only me, I think I have invented new ones!!! – Well at least it gets the frustration out of you.
I do wish you both the very best.
Take care Teresa, best wishes
Ann
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Hi Teresa
Thank you for your kind comments. I am having one of those nights!! Feel so useless and very sad – but being on the forum does give you a lift – and you don't feel that you are so alone!!!!
I honestly thought that with 2 weeks medication- CDT, that Pete would have started to feel some ease from his pain, but it has not happened, his pain has got worse.
Anyway, as David says, Onwards and upwards!!! He certainly has created a 'catchphrase'
You both take care.
Many thanks
Ann
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Hi Vicki
Things have got worse tonight, got home from work, Pete said he bent over and felt a searing pain in his spine, finding it difficult to walk. He had something to eat and went to bed at 7.30. He actually had a bottle of lager, I think he was hoping it would ease the pain, or at least relax him.
Had a horrid night last night, we both did'nt sleep much, he has now got a chesty cough, which obviously hurts his ribs when he coughs!!
I thought Gill's post was so sad and could feel for her in every word that she wrote.
I have had a couple of glasses of wine tonight, but just wish Pete was down here to share it with me.
Take care both of you
Best wishes
Ann
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Hi Gill
Please don't feel that you need to apologise!!! I am sitting here crying, for you mainly because I thought your post was so moving – and also because my husband, also 57 went to bed at 7.30pm tonight. In so much pain, it is spreading on a daily basis! We are starting to think that perhaps not all related to myeloma!!! I just cannot bear to see him like this.
God Bless Gill
Take care
Ann
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Hi Vicki
No, it does'nt get any easier, does it!!!! After only just over one week on the CDT, I have seen quite a change in Pete (really just over the last 2 days), but unfortunately not for the better. The pain has not gone away,just moved from upper back to shoulder, as I previously mentioned, and now at the front of his ribs. If only he could get some respite from this (still sleeping half sitting up) -he would be so much better. He goes for a full body MRI scan tomorrow.
He has now lost his appetite and taste and is having trouble going to the loo (but we knew about these side effects). He has also had the hiccup syndrome like Paul mentioned.
What are the bone tablets Colin takes? as I mentioned before, Pete has to go on a bone drip every month for 30 minutes – there are so many individual treatments!!!! I am sure you must agree, you cannot find another person on this site with the same issues, all different in one way or another!!!
We cancelled our holiday at the week-end. We were due to fly to Turkey for 2 weeks mid-June. Pete loves his hols, he normally plays golf every 3 days, bless him, has'nt played since last October. We are hoping for a break in July/August, depending on how things go. It has really been interesting reading about insurance on the forum, as David said, certainly not worth taking any chances whatsoever where travel and health are concerned.
Take care both of you
Ann
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Thanks Tom
Another question answered!
Take care
Ann
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Hi Vicki
I have posted a general message, but just wanted to know how you and Colin were? hope you are both well.
Really think that it has just hit me!!! Seeing Pete so poorly, just feel so useless and sad. But saying that, so many positive comments on this site, can't spend time feeling sorry for myself!!! – Pete is so positive, despite his pain and I am very tearful at times!!! So who is the selfish one!!!
Anyway,have a good evening, weather has been lovely down here in Somerset today, but apparently rain again next week!!!
Take care
Ann
Hello all
Hope you don't mind me bothering you again, but I do have a question!
Pete started CDT last Saturday, fine for 2 days, his upper back pain actually eased, but after bone drip (pamidronate)on Tuesday, he has felt quite rough! He then got a terrible pain in his left shoulder. still not gone away.
He was told about side effects and we were ready for that, but last night he woke up with bad pains in the front of his ribs, quite scary because he also needed to take a spray of Nitrolingual (given to him in the event of chest pains). It did ease him and he went back to sleep. We went for a walk this afternoon, and OMG, my fit husband was out of breath! He has to go for a full MRI scan on Tuesday and so hopefully we shall know more.
I know this illness is individual, but I think he looks ill. albeit he is a really tough cookie!! and I really am confused and very sad at the moment
Ann
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Great News David
Best wishes
Love Ann and Pete
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Hi Vicki
Nice to hear from you, hope Colin is keeping ok and you too!
Yes Pete started tablets on Saturday, had a really good day Sunday, upper back pain actually disappeared for first time since end of December. He felt quite upbeat, no obvious side effects.
He went for a bone drip on Tuesday- Pamidronate (Aredia). (Has to go once a month for this). Really set him back, he felt quite poorly yesterday, but the symptons were as predicted and so it did not scare us so much. He does feel brighter today. Pete is still working, like Colin, but in bed by 8.30 pm and sleeps really well, I think I am right in saying that is the Thalidomide.
We received another letter from hospital today just confirming the diagnosis. They have said that once myeloma is under control with CTD then consideration will be given to an 'upfront consolidation high dose melphalan autograft' – (another expression we have not heard of), will have to look it up later. No mention of paraproteins measures, which is mentioned alot on this site.
Anyway, will let you go.keep in touch
Ann
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Hi Vicki
Anytime you need to talk, please do, you will be helping me as well!!!!
Have a nice evening
Ann
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Hi Vicki
Pete was diagnosed a couple of weeks ago, I really don't know what I would have done with out this forum. Such lovely lovely caring people!!!!
I am really sorry to hear about Colin,but as you know it really is an individual condition (OMG, I sound like an expert now), but no, it is only from reading the comments posted here. Pete is 57 and started his treatment on Saturday (CDT) and has to go for bone strengthening treatment tomorrow. I am really scared,keep looking for side effects (the leaflet information in the boxes of tablets are enough to make you panic!) Like Colin, Pete at 57 is fit, loved his golf until his upper pain started in December.
Anyway, the good thing is that only after 2 days of medication, Pete has had some respite from the upper back pain (his blooming shoulder is playing him up now), but don't know if this is connected or not.
I sometimes feel guilty posting on here, because I am not the one with the illness, but it is heartbreaking to see your partner in so much discomfort.
I wish you and Colin well Vicki
Take care
Ann
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