Carolsymons replied to the topic Claiming PIP (DLA) in the forum Off topic 10 years, 8 months ago
Hi Richard
I haven’t had to go through the assessment as luckily I applied before the change to PIP. Even so I had to appeal their first decision which was to award me the lowest rate of DLA. After my appeal they changed it to a higher rate. I know there has been huge dissatisfaction with the assessments and I think I heard that ATOS are giving…[Read more]
Carolsymons replied to the topic Serum free light Chains kappa and Lambda in the forum General 10 years, 8 months ago
Megan you are right. It is the ratio you need to monitor as well as the total kappa and lambda numbers.
Carol
Carolsymons replied to the topic Good partial remission 100 days after SCT? What does that mean? in the forum Treatment 10 years, 8 months ago
Andrew
As I understand it after SCT, complete response looks for no cells in the biopsy and no paraprotein detected. Stringent complete response requires a normal light chain ratio as well. But….I have read of people on this forum who, like you, had paraprotein evident at the 100 day mark, but this continued to decrease as time went on, so…[Read more]
Carolsymons started the topic Bisphosphonate post transplant in the forum Treatment 10 years, 8 months ago
Another question… I am 45 days post transplant and the consultant said to resume the bisphosphonate which in my case is parmidronate. I haven’t had any since late November. Is it usual to resume this so early after transplant, or did others have to wait till after the 100 day mark? Seems that different doctors recommend different treatments,…[Read more]
Carolsymons replied to the topic Buddy's wanted – Stem cell harvest – Dec 2013 in the forum Treatment 10 years, 8 months ago
Thanks Jean
I am only 45 days post transplant….hope it is the right thing to be back to the bisphosphonate??? Anybody else know about this?
Carol
Carolsymons replied to the topic Buddy's wanted – Stem cell harvest – Dec 2013 in the forum Treatment 10 years, 8 months ago
It is lovely to have the good blood test results, but I just wish I had more energy! I have my unit for sale too now, so have to keep everything pristine for viewings….stressful! Also, my husband is going overseas on Monday for a month, so I will be home alone. I know I will be fine, it is just that I have been relying on him for driving and…[Read more]
Carolsymons replied to the topic Buddy's wanted – Stem cell harvest – Dec 2013 in the forum Treatment 10 years, 8 months ago
Hi Angela
It sure does take some time to recover from the dreaded melphalan. I still feel nauseous occasionally, soooooo tired and have to force myself to go out for a walk. After only a short distance I feel weak and shaky but must persist. I am on 2 prophylactic antibiotics (which I hate taking) but the consultant stopped the antivirals a…[Read more]
Carolsymons replied to the topic Getting Blood Test Results in the forum General 10 years, 8 months ago
Graham you are so right. I carefully monitor all of my blood test results and become really annoyed when obstacles are put in my way. These are my results, my cancer and I want to know. I had an accidental win last Wednesday. I was unaware that Hammrsmith was monitoring my iga, paraprotein and free light chains since transplant, so had not…[Read more]
Carolsymons replied to the topic Happiness- 42 days post SCT! in the forum Treatment 10 years, 9 months ago
Hi Dick
That must make you anxious, but I have read on the forums of people gaining full remission even after 6 months post transplant. I never know if my results are really good or just to be expected, as even though I was really happy (especially about finally attaining a normal free light chain ratio) the consultant doesn’t really comment.…[Read more]
Carolsymons started the topic Happiness- 42 days post SCT! in the forum Treatment 10 years, 9 months ago
Soooooo happy! Blood tests from 2 weeks ago….paraprotein undetectable, immunoglobin a- normal, free light chain ratio- normal (first time in the normal range since diagnosis 11 months ago.) Now fingers crossed I can maintain these fabulous results unlike after CDT when I relapsed after only 3 weeks off treatment. BMB due day +100. So this…[Read more]
Carolsymons replied to the topic Mouth sores…to ice or not to ice that is the question. in the forum Side-effects 10 years, 9 months ago
Hi Dusk
Yes it is daunting especially when still recovering from such a harsh process as the SCT. However, all of my family is in Australia and at 64 I am ready to retire and try to enjoy whatever years this cancer allows me. Selling in the UK is quite different from Australia as well, so I am just putting my trust in an estate agent and hoping…[Read more]
Carolsymons replied to the topic Mouth sores…to ice or not to ice that is the question. in the forum Side-effects 10 years, 9 months ago
Hi Vicki & Colin
Well I am now day 40 days post SCT and am definitely having more good days than bad. All bloods are within normal range and I am eagerly awaiting day 100 when cancer markets will be checked as well as another biopsy. I am still quite fatigued but am down to 1 nap a day instead of 2, so that’s progress. I rarely sleep more than…[Read more]
Carolsymons replied to the topic Getting Blood Test Results in the forum General 10 years, 9 months ago
I have to admit that when I was with Ealing Hospital I had to battle with the Macmillan nurse in charge of the day ward to get my blood test results. Either she would tell me they were not back (when another department had seen on the computer that they were) that she was too busy to print them; that I should wait till I come back in 3 weeks to…[Read more]
Carolsymons replied to the topic The guesswork that is myeloma treatment at present in the forum General 10 years, 9 months ago
Kim
I agree with you. In my experience the NHS has been nothing but AMAZING! I have dual citizenship (Australian and British) but do not believe that Australia’s Medicare system would have provided me with the care I have had here in London. Actually, in Australia people are almost forced to take out private health insurance or pay an extra…[Read more]
Carolsymons replied to the topic Buddy's wanted – Stem cell harvest – Dec 2013 in the forum Treatment 10 years, 9 months ago
Hi Angela
Great news about Graham being home. I am up to 32 days post SCT and am definitely having more good days now than bad. Still have some nausea, but no vomiting, no diarrhoea (but frequent toilet visits) but I did read that the melphalan takes at least 6 to 7 weeks before side effects lessen (5 weeks tomorrow for the melphalan). For a…[Read more]
Carolsymons replied to the topic Hi there in the forum Newcomers 10 years, 9 months ago
Hi Jo
Don’t listen to the horror stories -according to my experience, it is not that bad. I have met a 10 year survivor (a super fit 69 year old cyclist) over at Ealing Hospital, who managed 8 years drug free from his first transplant. Now just imagine that! But….like any treatment with this disease it is so individual and the 2 to 3 years…[Read more]
Carolsymons replied to the topic Hi there in the forum Newcomers 10 years, 9 months ago
Hi Joe
I am just 22 days post transplant and while it is not a pleasant process and I am still fighting the side effects (fatigue, nausea and vomiting) from the melphalan (high dose chemo) it hopefully will be worth the week or so of suffering for a long remission. But, like everything else with this unpredictable disease, even the SCT is a gamble.
Carol
Carolsymons replied to the topic Partial Remission in the forum General 10 years, 9 months ago
Hi any
Which company do you recommend for travel insurance?
Carol
Carolsymons replied to the topic Buddy's wanted – Stem cell harvest – Dec 2013 in the forum Treatment 10 years, 9 months ago
Hi Angela
Good to hear -so far so good….but be prepared the worst is yet to come!
Carol
Carolsymons replied to the topic Bayer CEO – New Drug "not for poor people" in the forum Treatment 10 years, 9 months ago
Even Australia is using Velcade for front line treatment, but here in the UK, from my experience you have no option but CDT for initial therapy. The only reason surely is its cost as Velcade has been proven as more effective. Yes you can join a trial and get Velcade, but when I researched that option and asked to be referred my consultant was…[Read more]