[jmsmythParticipant]

Hi Vikki

Great to hear from you hope all is well with Colin. I read Ali’s post that you have booked a holiday. When and where? You might have mentioned it before but I have a head like a sieve. Wherever it is I hope you have a great time

Shingles have been awful but today’s he’s been on good form. He took a shower and it didn’t hurt and he says the itch has gone. So just hope that every day he improves a little.

My best wishes to Colin and hope all is good with him

Jean x

[jmsmythParticipant]

Hi Eve how long since you have seen the family. I’m sure You are both excited. Shingles are awful. He says the pain from the spots has eased a bit but back pain is terrible. (He had been free of it form months)

We have a cruise booked for 8 May. Don’t like booking that far ahead but it gives Frank something to look forward to.

Long May Slims bloods be good
Jean x

[jmsmythParticipant]

Hi Eve

So glad to read of your news. I hope it goes on for a long time. When does your daughter arrive. Something to look forward to

Best wishes to you both
Love Jean x

[jmsmythParticipant]

Hi Jan

Thanks for getting back. Frank has been lucky as far as infections go. He’s had the odd cole, which like you takes him about 6 weeks to get over. But no infections, thank God. Shingles has been the worse. I record his bloods in the Myeloma diary and they are all within range. He I’d have low potassium and phosphates but they are now rising. Vitamin D a bit low. With franks back pain he can’t sit too long prefers to stand. He has had MRI on hopis back on a right few occasions and she keeps saying nothing to do with Myeloma injury is years old. Frank says he remember when he did it. He did have pain in lower ribs 2 years ago and MRI showed small lesion. Radiotherapy consultant said she wouldn’t do radio therapy and hoped she wouldn’t see him again. I will definitely loom out for light chain results and Ppreciate info

Take care

Jean x
Ps forgot !!! Something wrong with para thyroid !’m

• This reply was modified 10 years, 9 months ago by  jmsmyth.

[jmsmythParticipant]

Hi San thanks these shingles certainly get around. Frank has had the rib pain for some months. Long before shingles. I asked our doctor if consultant had ordered MRI scan as she said she would but she hasn’t. Seeing her Wednesday so will investigate.

Jan do light chains alway increase with an attack of shingles? Franks consultant does not like ibuprofen – if she had her way it would be banned. But as it’s the only thing that gives Frank relief – he tries not to take too many in a day. Doesn’t like taking any pain killers

Annette it’s interesting what you said about band pain. For years Frank has suffered back pain. Consultant said something wrong with a lower vertebrae but not myeloma related – an old injury. It disappeared about 4 months ago and it’s back today with a vengeance. Frank thinks it’s coming from the shingles. Something else to ask consultant

All of your advice and comments are very much appreciated

Keep week
Jean x

[jmsmythParticipant]

Hi Helen

Glad you are eventually getting over the pain. I asked our doctor and he said the pain can last months. Frank has just got up and he said he “thinks” the pain is a bit easier. He says he is now suffering from “sleepy sickness”. He’s gone from 5 hours sleep a night (always been his sleep pattern) to nodding off a at the drop of a hat

Any holidays planned. This damn weather is so depressing

Keep well
Love Jean x

[jmsmythParticipant]

Hi all

I contacted doctors and he checked for me re SCT and thyroid doctor app. The appointment for thyroid doctor was requested on 9 January. Doctor did tell me that doctor concerned had a long waiting list. I asked him to check the MRI request and was told there wasn’t one. He said he would phone hospital and find out

Thanks all
Jean x

• This reply was modified 10 years, 9 months ago by  jmsmyth.

[jmsmythParticipant]

Hi Pete

Yep! He has it there as well. How long does it last. Doctor told him that once the bolsters break he will no longer be contagious. He seems a little brighter today. The ibrofrem seems to help him. The pharmacist today told him not to put any cream or lotion on as the applying of it could aggrivate the rash. I do feel helpless as there is nothing I can do to help. Did shingles affect your appetite? He hasn’t eaten much since the rash appeared

Thanks all for replies
Jean x

[jmsmythParticipant]

Hi Maureen

Last time we were at consultants she got an X-ray of his chest. No,point in going to our doctor he is dead slow and stop. We are seeing consultant today week so hope to get everything sorted. Thanks for your reply

Hope Ian is doing well

Jean x

[jmsmythParticipant]

Hi JoJo and Jane

Thanks for your replys. Frank was given acoclovir. The pain relief he was prescribed was not helping him. Our pharmacist advised him the take ibrofrem our son brought it to him tonight and it’s the first time he’s had some relief. Hr told me that this morning the pain was horrendous he thought his body was on fire. He seems to be a bit better tonight. Thanks JoJo for the tip on the vinegar. I passed it on.

His new cells are 1 year old on 3rd March. On 100 day his WBC, HG, NF etc were good.. No trace of PP and PET scan showed no cancer. I was over the moon but since then – although bloods good- his potassium, phosphates are low, he’s had a pain in his ribs, bloated tummy (looks 8 months pregnant)and also something wrong with his thyroid. 8 weeks ago consultant said would organise MRI, and would get appointment for him to see bio doctor – re,thyroid. He’s still waiting. I have had enough and we are seeing consultant on 5 March, so I’ll either
get something sorted or I will be thrown out of hospital

Sorry for rant amd thanks for reply
Love Jean x

Ps JoJo how are you doing. Hope things are good for you x

• This reply was modified 10 years, 9 months ago by  jmsmyth.

[jmsmythParticipant]

Hi sorry to hear that your husband has MM. My husband was diagnosed in 2006 with smouldering MM. He had SCT In March last year. In the 8 years that he’s smouldered he’s had Zometa on and off. He started it again after SCT but had to stop,as his potassium was low. He has never had a any side affects ( potassium low because of SCT). He has sailed through Zometa and hopes tomstart again when potassium stabilised

Kind regards Jean

[jmsmythParticipant]

Hi Angela

We have BUPA and my husband was diagnosed 2006. His consultant did not take private patients and although I tried to encourage Frank to go the private route, (thought he would have more individual attention) he decided to stay with NHS. Although I have had some gripes, Frank is very happy with the route he took and when he has needed MRI, PET scans etc they were readily available. Whay does your husband think. To me, the most important thing with this bl***y disease is that the patient has complete trust in his medical team and Frank does. If he feels unwell, he phones the help line at the hospital and he’s in the day unit within a couple of hours. It’s a decision your husband to make an I wish him well whatever route he takes

Love Jean

[jmsmythParticipant]

Hi Vicki and Colin

I don’t understand what All clear are up to. That’s who we got insured with. Frank did it all, I, thankfully was not involved. I know they were sticky on “do you take powerful painkillers”. Frank doesn’t. His consultant wrote a letter saying about SCT and about tests PET scan and said “no detectable myeloma cells”.he doesn’t take any drugs at all. Other people on the forum have been insured with them and don’t think they had problems. I’m not sure about Colin, but Frank has no bone or kidney damage. Maybe that has something to do with it. I do hope you get something sorted. We have booked a cruise for May. Don’t like booking that far ahead. But…..

Hope you get something sorted soon. It will do you both good to get out of this awful weather

Love Jean x

[jmsmythParticipant]

Hi Carol

Before Frank had SCT our travel insurance was through Columbus. They were good. After transplant we got a yearly policy with All Clear. Excellent price although it did not include USA

Jean

[jmsmythParticipant]

Hi Eve

Glad that Slimis getting treatment. Hope he gets something good out of it. I know more and more treatments are coming on line but let’s hope Nice Get their finger out soon. I play scrabble on my iPad. “Words with friends” I play with Elaine, Toms wife. To be honest it acts as a relief. I look forward to our games. I’m glad to hear that New Zealand is coming to visit you and Slim. Lots of photos and videos !!!!!. When are they coming.

Photo is of last cruise. We have booked one for May. Don’t like booking that far ahead but …… Franks bloods are good but phosphates and vitamin D are low and the meds make him feel very sick. she has referred him to a bio dr re something wrong with thyroid and then on Wednesday she wants him to see someone else. I have it recorded so will have a good listen and find out exactly what’s going on.

Take care of yourself Eve and love to Slim

Love Jean x

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