[andygParticipant]

Hi Bijou.

Welcome to the club that no one wants to join. You’ll find us a friendly bunch – well I suppose that depends on our Dex cycle. No question is too trivial or daft. Anything your not sure of ask away – and I mean anything because sometimes things can seem a bit personal but we’ve all had some problems of that nature and needed some advice/tips on how to cope.

Oh and don’t be afraid to come on here to moan about things anything have a good old rant and rave as well scream at us if you feel like it we won’t be offended and hopefully we’ll be able to help you. And as the old saying goes it’s better out than in.

Late diagnosis in myeloma is common. Doctors on average only see one or two patients with myeloma in their careers. MyelomaUK are making doctors more aware of myeloma by arranging conferences and giving awareness packages to GPs throughout the country.

Normally blood tests come back the same day when on treatment. Two hours if on a quick turnaround. Well at our hospital they do. Your bloods may have been sent to another hospital to be analysed. Paraprotein(PP) test, the measure of the active protein, results usually take two days. If you do show PPs you will probably have a Bone Marrow Biopsy(BMB) as well.

After all the tests are in they will decide how to go about treating you. The normal first line treatment is Cyclophosphamide, Thalidomide and Dexamethasone (CDT) which will hopefully get you to an Auto(self) Stem Cell Transplant in 6 – 8 cycles. Your lesions may also be treated with radiotherapy.

Hmm I think that’s enough for now. It’s my Dex day so I don’t sleep much and I tend to ramble a lot! Don’t forget to to ask your questions whatever they are.

Every day is a gift.

Andy xx

 

[andygParticipant]

Hi Liz & Kev.

The Nottingham beer festival is the 7th – 10th of October and hopefully we will be there sampling a few of the beers on offer.😋

The Nottingham Robin Hood Marathon is on the 27th of September unfortunately 26.2 miles is  about 26.1 miles to far for me now so I’ll be giving it a miss.😢

We may pay another visit to Belgium later in the year just to compare the beers. 😁

Every day is a gift.

Andy xx

[andygParticipant]

Hi Ben.

I was diagnosed October 2011 and have seen the same consultant since then. I’m on my second specialist Myeloma nurse though the original one, who got promoted, is still active with the Myeloma patients too.

I haven’t got to SCT so I’ve been pill popping all the time so over the last 3 3/4 years I’ve seen my consultant a lot! I’ve also seen a professor at another hospital for second opinions at the request of my consultant and I know she communicates with him about my treatment.

Every day is a gift.

Andy

[andygParticipant]

Hi Stuart.

Thanks for your prompt reply.

I was aware of the plans for a look into improving the forum having discussed the forum experience at the Newcastle info day with Maggie.

For now though I’m finding the Word “solution” is ideal for me because I don’t have to remember to copy my posts or risk losing it every time I want to move away and check facts or gather info in the middle of a post. Hopefully I’ll become more active and contribute more to the forum as I used to in the past with my own little solution.

 

Andy

 

[andygParticipant]

Hi Mavis.

I think you may have misread our posts. I am finding Pomalidomide very tolerable and to date it has been my easiest drug regime. I think Helen has a few more issues than I but is comfortable as anyone can be on treatment with Pomalidomide.

We we’re talking about treatment after Pomalidomide which at present will be harsher drugs with all sorts of possible scary side effects hence the hope Pomalidomide keeps us going till new drugs get round that damned corner.

The trouble with tiredness is that it is caused not just by the drugs but also by myeloma too. So there’s just no escaping it.

 

Every day is a gift.

Andy xx

This post was composed and edited in Word and then copied and pasted here. Worked a treat for me I found it a lot easier 😉👍🏻x

[andygParticipant]

Hi Helen.

It’s my Dex night/morning too my nap is over and I’m awake again.

I know what mean about hoping that Pomalidomide lasts a long time because I too know the the next drugs will be harder to tolerate. Bendamustine which is predicted to be my next treatment has a very mixed press side effects wise so quality of life will take a hit. The size of that hit remains to be seen. Unfortunately the drugs in line are not so well targeted and take out more of the good guys, cells, along the way.

I hate it when you write a long post and it disappears so easily by one little mistake I’ve often thought of doing my posts in Word, other word processors are available, and copying and pasting it here. Not sure if it’d work haven’t got round to trying it out yet.

I’m like you stable at the moment and doing my best to make the most of it. Though tiredness does limit some activities so the cricket test matches come in handy and when that’s not going well reading in the sunshine is good.

Right time to battle the Dex insomnia again for a little nap.

Every day is a gift.

Love Andy xx

PS – Just tried doing this on Word and it’s worked!

Obviously if it hasn’t worked you won’t be able to read this or the previous statement lol xx

 

• This reply was modified 9 years, 3 months ago by  andyg.

[andygParticipant]

Thanks everyone.

Well cycle 21 is underway and I’m all Dexed up. Tablet 1 of my 21 Pomalidomide tablets has been washed down not with beer I hasten to add but water. I’ll raise a beer and wish good luck to cycle 21 on Friday. We’ve got a busy day Friday Steph and I we’re lunching with Ian and Maureen Sinclair, from this forum, and then Friday night celebrating my brothers 60 birthday.

Richard are you saying I’ve got an attitude 😳 lol. We’ve got to make the most of what we have whilst we can 🍺😋🎉👍🏻 Going to enjoy the rest of the summer and whatever may follow. By the way how did your exams go?

Every day is a gift.

Andy x

[andygParticipant]

Hi Liz.

It’s my Dex night so I sometimes come around here to check how everyone is getting on. I used to be around more often but I found the forum website a bit difficult and slow after it got “updated” though it’s behaving itself tonight.

How is Kev getting on? Did he have the second round of DTpace?

You mentioned Kev’s neutrophils being 0.6 that reminded me of when was on RCD my neuts were never far from that for 18 months!

I hope you are ok too Liz I’ve always thought carers get the s****y end of the stick.

Every day is a gift.

Andy xx

ps. Seems to me the site has been sorted. No problems whatsoever tonight.

 

[andygParticipant]

Hi Vicki &Colin.

Congratulations to you both. I hope you both had a fantastic day.

Wishing you plenty more days together that are filled love and joy.

Every day is a gift.

Lots of love to you both Andy xx

[andygParticipant]

Hi Helen

Belgium was brilliant. The weather was great, the beer was great, and the natives were friendly.  I’ve been going regularly since 2002 initially it was with my running club mates. We’d do a race the first day we were there and then spend the rest of the time rehydrating lol. Must of been around a dozen times now. No more trips planned till September how will I cope?

I have a couple of off days per week though that’s just the usual Dex up and down days. I went for my three monthly consult today and nothing much has changed so my 21st cycle starts next Tuesday.

You seem to be having more side effects than me the only problems I seem to have are Dex related. Though I’ve put a lot of weight on too I’m making up for when I was on RCD and food was awful.

I hope you’re not overdoing it with the move and the refurbishment. We need our rest.

Every day is a gift.

Love Andy xx

[andygParticipant]

Hi Liz.

I was tried with DTpace in 2012. After five days in hospital hooked up to all the infusions and the constant beeping I was later given a BMB which showed that most of my bone marrow had been wiped out though not the myeloma so I didn’t get a second cycle. It seems DTpace is like marmite it either works well or doesn’t work at all. There doesn’t seem to be much of a middle ground.

I’m on Pomalidomide myself now in the middle of my 20th cycle. Hopefully DTpace will work and Kev can keep Pomalidomide can be kept in the cupboard for a later date.

Every day is a gift.

Andy xx

[andygParticipant]

Hi Vicki.

When nothing was working for me I was tried with DT-pace. It meant a five day stay in hospital whilst I was infused with a concoction of drugs. I think I had five drips going into me 24/7 after the first cycle, usually you have two or three, my bone marrow was nearly wiped out but the myeloma was still hanging around! So that was the end of another treatment for me.

Recently we had a support group meeting, and was repeated at the info day, we were told that BMB’s are a very hit or miss diagnostic tool. Two BMB’s in the same patient can give very different results depending on where the needle hits. I’ve also read that the sternum is a better site for the test.

Not that any of this helps Colin but in my mind it does give hope that his bone marrow may not be totally wiped out and given time it could recover somewhat. Grasping at straws? Maybe but I’ve been doing that since I was diagnosed.

I hope you and Colin can have some quality time together and things improve over time and the worst case scenario doesn’t occur.

Every day is a gift.

Lots of love to you both.

Andy xx

• This reply was modified 9 years, 4 months ago by  andyg.

[andygParticipant]

Hi Vicki.

Sorry to read about Colin’s woes. When I have my regular stays in hospital at the beginning of every year, it seems that way anyway, with high temperatures and high infection markers, CRP I think, they almost never discover the cause. You can also have infections without a high temperature – something I learnt recently.

As you may know I’m on my fifth line of the different treatments available, only two have worked to date, so there should be more options for Colin to move on to. Melphan has been mentioned as a future option for me as well as Bendamustine and I know they are harsher drugs to tolerate and a bit less focused. The first cycle of any treatment is usually the worst to cope with the because your body isn’t used to the drugs. As we know everyone reacts differently to them too. I am finding Pomalidomide easy to get along with whereas Helen has lost some of her senses. 😯 I had all those troubles with Revilimid including being neutropenic nearly all the time I was on it!

Hopefully Colin will adapt to the melphalan and he cope with it and the end result he gets into remission however they measure that because I don’t know!

I started my 20th cycle of Pomalidomide yesterday so I’m a few ahead of Helen 😉 and we’re off to Belgium for a few days on Friday.

Every day is a gift.

Love Andy xx

[andygParticipant]

Hi all.

I can relate to the tiredness sometimes I struggle to get out of the bed. My best part of the day for doing things is before 2pm after that I just can’t be bothered! Sometimes have a nap in front of the TV at teatime but fortunately I’ve never needed to have a proper sleep in bed or a duvet day yet.

Every day is a gift.

Andy xx

[andygParticipant]

Hi Kaz.

The first few weeks of most treatments are hard as the body copes with the poisoning it’s undertaking. If it persists or gets too much for your mum the medics will reduce the dosage of the drugs. The big thing to balance is quality of life over treatment especially in the elderly. That applies to your mum too Sarah.

Every day is a gift.

Andy xx

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