[bandityogaParticipant]

Hi Liz

So pleased to hear Kev is out of hospital and I hope he continues to improve and you too can get away to the sun.

Jan

I hope you are not suffering too much on velcade and it is bringing your FLC down for your second SCT. Ian’s tummy was bruised for months with the velcade injections.

I did ask Maggie about adding chylophosphamide to velcade and revlimid and she agreed that it should be added but doctors refused.

We are having a few days around Harrogate and might fit in another holiday abroad this year. Making hay while the sun shines Helen.

Maureen x

[janwParticipant]

Hi Maureen

I think it’s a great decision for you both to go away for a few days in Harrogate and just enjoy yourselves, especially with the weather still being quite mild. Relaxing on holiday is such a good way to unwind, relax and forget about myeloma concerns.

The first Velcade cycle was eventful. The nausea medication is excellent, which was such a relief after previous CDT treatment caused me ongoing daily sickness for months. However, peripheral neuropathy kicked in after the end of week one and week two, resulting in some painful nights, but did subside during the week off. I’ve also increased my pain killers during the evenings which is helping, together with more throws, hot water bottles and increasing the heating. Hubby thinks it’s like the tropics in our house! My consultant has lowered the dose of Velcade for the second cycle to help manage the PN.

During the end of the first two weeks, I developed a high temperature, a full body rash and raised CRP levels, which resulted in me being admitted into hospital for 24 hours with antibiotics as well as drugs for low white cell count. I’ve been taken off the gout medicine, Allopurinol, which might be causing the rash. Fingers crossed, it’s not the Velcade which is causing the rash. However, the good news is that the first cycle has managed to reduce my light chain results from 1900 to 800 which is terrific news and well worth the side effects.

I now just have to get through cycle two, hopefully without the rash and the temperature returning. With any luck, the reduced Velcade will help with the PN. Unfortunately, I’m probably being taken off cyclophosphamide for a short period of time because it appears to be lowering my white cell count. It’s just taking it cycle by cycle to see whether the drugs are continuing to work, which is such an emotional process for both myself and hubby.

Jan

[bandityogaParticipant]

Hi Jan

We had a lovely break away, one day in Harrogate and 2 days at Rockcliffe Hall near Hurworth. It is our favorite hotel and we usually go once a year. This year they added a garden spa which was wonderful, only 6e people are allocated the spa at one time and the weather was beautiful. We also paid a visit to Beamish and I found it very interesting how people lived in 1913. I could have listened to the stories the miner told all day. We are off to Puerto Mogan in Gran Canaria at the end of the month for a week as Ian is still ding well.

I was sorry to hear you had a night in hospital but the good news is the velcade is working for you and it will be worth it to get into remission. Do you know how many cycles you are having? I hope you afe not suffering to badly with the side effects.

You will have a high heating bill, but men and women differ in temperature. I am always colder than Ian and on goes the heating.

it is good to get some normality back in our lives, I have rejoined the Rock Choir, I go to an exercise class on a Monday and pilates on a Thursday and I also do some volunteering work for the church. We go out most days and have a coffee, followed by cake which we now share as we were putting on weight. Ian’s friend visits him on a Tuesday night and they have a beer and play football on the computer
Ian also goes to the gym twice a week and has built up his muscles again and feels good about himself.

Hope it’s not too long till you can get away on holiday too and forget about myeloma. I think it is dreadful that revlimid and pomaledamide have been taken of the CDF but it is still available in Scotland.

Maureen x

[andygParticipant]

Hi Maureen.

It’s a small world isn’t it. We’ve been to Harrogate and Rockcliffe hall in the past few weeks.

We went to Harrogate with my brother and his wife and met up with our sister and her husband, who live there, to go to a concert in Harrogate.  We saw Squeeze and John Cooper Clark after a lovely meal in a nearby hotel. We went to Rockcliffe Hall for Sunday lunch, again with my brother and his wife, and were really impressed with the standard of food, service and the surroundings.

Glad to see Ian is improving and I hope you get to have that holiday soon.

Every day is a gift.

Andy xx

ps. Tonight’s production was brought to you curtesy of Dex.

[bandityogaParticipant]

Hi Andy

We did think about meeting up when we were at Rockcliffe Hall but thought you weren’t up to it. It is a lovely hotel and you should treat yourselves to a night away. They often have offers at different times of the year. The spa is wonderful and they have a huge hydrotherapy pool.

We saw the consultant today and Ian is still in remission,(sigh of relief) so his next appointment is 2 months away at the outpatient department.

Good to know you are improving, I am sure you will be doing all you can to get back your mobility.

Maureen x

[janwParticipant]

Hi Maureen

I’ve just lost my last three attempts at replying to your post and my computer is jamming again as I write. I am so happy that you are leading a more normal life now that Ian is in remission with his myeloma. You must be relieved he is only having to see his consultant every eight weeks and that his myeloma levels are holding well. A holiday in Gran Canaria will be lovely and relaxing for you both at this time of year, especially with all of the grey days we are having at the moment.

Apparently my light chain levels need to achieve a decrease of 90% before a second stem cell transplant can be considered next year. The first cycle saw my light chains drop from 1,900 to 800 which was terrific news and hopefully this Friday, I should receive my second cycle results. It’s just taking it cycle by cycle and seeing whether I still respond to treatment and how many cycles are necessary or which I can continue to tolerate with the toxicity of the drugs.

Computer still playing up and time for me to see whether I can sleep tonight after two nights of sleepless nights due to steroids.

Jan x

[andygParticipant]

Hi Jan.

I think it’s a site problem I can’t post anything either though if you’re reading this it must of worked lol. Anyway I’m giving up posting tonight time to watch some tv curtesy of Dex.

Every day is a gift.

Andy xx

[andygParticipant]

Ha – I knew it a little post complaining would get through. One more try at the long one then it’s tv time. XX

[Author]

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