[avrilro55Participant]

Thanks so much for your comments. I am not going to go down the SCT route. I don’t think i could cope with it from what i have heard . My consultant has said even though i am over the “accepted” age for SCT – i am 73, but because i so well and fit he would not have a problem with me having it done. guess it just a personal thing and not for me. Reading your comments would i still be eligible for velcade? Thanks for your response.

[avrilro55Participant]

I also have a question ? I had standard CDT treatment last year for four months, finishing in June and no treatment since, with the exception of Zometa bone i fusion 6 weekly. I last saw consultant in June and due back end of October. My light chains plateud  out at 37 last June and had risen to 100 in a year. I know in the scheme of things i been lucky so far, no symptoms etc., since coming off of CDT and light chains were 347 when first diagnosed with a single plasmacytoma!.  This was treated by daily sessions of radiotherapy for four weeks. In answer to Potterman the hospital i am under first round of treatment seems to be CDT which is not under threat.   However, can someone answer me as to what is the usual second round of treatment is . They dont seem to be in a hurry to recommence treatment with me as all other bloods very good. It seems to be watch and see at the moment!! Does anybody else have this kind of experience and would know what the second round of treatment is? Thanks for your anticipated response and wish you all well.

 

 

[avrilro55Participant]

Yes do post his progress. Also take heart its the drugs causing his mood swings , my husband and family all thought they were walking on eggshells when i was on treatment. They couldn’t do anything right but i got over it when i came off of CDT. Best to you and your husband.

[avrilro55Participant]

I am so soory to hear about ur husband Chris. i also had a Plasmacytoma, discovered whilst on holiday i. india. Needless to say I was hospitalised and then flown home for treatment. They wanted to operate on mine whilst in India, but I said no way. My daughtern the meantime did some research and found out more information. Spoke to a specialist here who said best way to treat this i. His opinion was byn intensive course of radiotherapy. At this stage myeloma was not dis overed. When i returned when straight into Addenbrooks Cambridge (whom my daughter spoke to) for immediate pain relief. During this 7 day stay myeloma was identified as the cause. Started 5 weeks daily radiotherapy (184 mile round trip each day) was totally zonked out. They got rid of the plasmacytoma and i began a round of CDT for 4 months. Have had no treatmen 14 months. My light chains were 367 to start with and went down to 34. They now up to 100 still no treatment. I would recommend a  second opinion at a different hospital. I am shocked they operated without first doing a bone marrow test as a plasmacytoma is a sign of myeloma. Where abouts in the country do u live. Also your husbands moods are due to the medication. I was awful when i was on them. No real side effects but moody, tearful and tired. Believe me he will come through it and it will get better for you. Its not all doom and gloom although in the early stages it does seem like that. I wish you both well.  PS i found the thalidomide the worse of the drugs.

[avrilro55Participant]

Thanks so much for this info. Your dad sounds like me. I 73 not going to have stem cell treatment. Been of first round of treatment now for over a year . Bloods all good light chains just 102.  Nopains and back to doing normal things. See consultant again end of October  (4 months since last visit). Will try these other insurers. Thanks for te nfo.

[avrilro55Participant]

Avanti quoted me £820.00.  Think i must be older than u i am 73 , but i very fit not on treatment except Zometa light chains only 100 all other bloods good. No pain. I have been off treatment for a year see Consultant end of October, 4 monthly interval between appointments. Strange how they can quote me so much. I not had sct and do not intend to, perhaps that the reason! Thanks anyway for your input

[avrilro55Participant]

I also used All Clear for my trip to Goa in January very good price; however when I enquired about America, as we have to go next year, they want £800 plus. I have been off treatment for a Year after only 4 months on initial treatment. Have no bone problems and consultant says I fit to travel. If anyone knows of another company would greatly appreciate hearing about it.

[avrilro55Participant]

Hi Bijou

 

Good luck with your blood results. Try and get them to write them down for u. I have kappa light chain myeloma and they measure my light chains and other bloods. I dont have to go back until end of October. I have been treatment free for over a year. I decided SCT was not for me, so going with regular treatment. My light chains are 102 but they not doing anything more yet as all other bloods and kidneys are good. When i started my myeloma journey my light chains were 357 they went down after radiotherapy and plateaud at 47 after 4 months CDT. .i feel really good, not tired no pain as others have had so count myself lucky. Who knows when they will put me back on medication but i not worried about it. Have just booked a holiday to India in January. Just keep smiling.

[avrilro55Participant]

I have seen the same Myeloma consultant and Myeloma Speciality Nurse (who i am sure has hidden wings) at Addenbrooks since first diagnosis in January 2014, with the exception of my last visit as my Consultant has taken 6 months sabbatical to do some research. He due back at year end. As i don’t have to go back until end of October I expect i will see a different consultant until mine returns after Christmas. My consultant told me at thee very beginning not to go to my own Doctor with any small problem that may occur but to ring them and he/they will treat me as a GP as most GPs re not sure how to treat a Myeloma patient. Its worked well with me. During the winter caught the dreadful winter cough which lasted ages. They prescribed strong antibiotics plus chest xray and  scan. I cannot praise them highly enough. Good to be at a hospital where they have Myeloma specialists, even though its 190 miles round trip for me would not change.

[avrilro55Participant]

Hi Bijou

 

so sorry to hear you have been diagnosed with Myeloma. Yes its awful the medication and the process we all have to go through but its not the end of the world! If u can, stay as positive as possible, even though u may have some awful side effects from the medication. I read your story with interest, i was diagnosed in early February 2014 with Myeloma. My story in the beginning not so different to yours;  i awoke on a November morning with a very stiff and painful neck.was going on holiday early January for a month to India, so like you wanted this rectified. I went to the chiropractor for 2 visits, did not make slightest difference. Then luck was on my side if you can call it luck. Went on holiday with stiff neck and feeling sick!! On plane pain got worse. When landing could not stand up, checked in hotel could local doctor who thiught it was a muscle spasm h came back following morning and did not like it so he admitted me to local hospital who did a scan . This time was 12:15 by 7:30 that night i was told i had a plasmacytoma on the octipal bone. They said they could treat me but afvised that i fly home and get treatment. Story undold was flown to Mumbai on airambulance and then first class to London where I was admitted to Addenbrooks Cambridge.( not sure where u live, but if u can get referred to Addenbrooks) go for it. Within 48 hoursrs had all the tests including bone marrow. Myeloma diagnosed. I had intensive radiotherapy and four sessions of CDT . I was caught early . Sorry to go on in this response, but i have now been in remission for over a year. Go back end October. I have 6 weekly Zometa infusions for my bones. No other treatment. Eventually it lwill come back but my message to you is ask loads of questions and remember its not all doom and gloom. Gooluk

[avrilro55Participant]

Where in the country do you live. I was seen within a week!

[avrilro55Participant]

I would suggest you get in touch with your local carers association. We have one in our village and she filled iut my forms enabling me to get a blue badge and attendance allowance.

[avrilro55Participant]

I also live in Nofolk and was diagnosed in February with Myeloma. I ws taken illen route to my holiday in Goa and taken straight to hospital when we lanses . I had a scan which showed a plasmacytoma in the skull. Was flown home by air ambulance and admitted to Addenbrookes Cambridge who have been fantastiic, thats where tests showed i had early stages of Myeloma.   I had intensive radio therapy every day for four weeks followed by four months of CTD treatment and am now in my first remission. Not sure how long remission will last but i responded well to treatment. I now have to go back bi monthly for blood tests and bone infusion..   I found the treatment harsh at times although bearable. Was taken unto our local hospital a couple of times with infections, buwt hey got through it. Tiredness was the biggest peoblem and radiation sickness.  Any other info you need hoep i can help in some way.

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