[andygParticipant]

Hi Helen.

I started cycle 20 yesterday. Get my definitive update on how I’m doing on the 14th July. Had a few little problems colds etc. for some reason my catheter has started to block regularly after three years of no problems.

Funnily (not funny really) enough I had just noticed I was getting headaches the past week! They’re not bad just a niggle but I’d never had them before. I will see if they return at the end of this cycle. How are you getting on besides the headaches?

How is the refurbishment coming?

We’re off to Belgium on Friday for a few days.

Every day is a gift.

love Andy xx

[janwParticipant]

Hi Helen

So pleased to hear your results are ok to enable you to continue with your treatment and enjoy your holiday home.

Our kitchen is almost complete, but getting up early for the tradespeople and being on constant alert to answer their queries has taken me a few months to recover my energy levels. We did think about extending the back of the house, but I couldn’t cope with living in the house whilst it was being done especially with the dust and constant mess. My dad is now in a care home, which means my brother and myself are trying to clear out his house which has just gone up for sale last weekend to pay for his care fees. My dad has recovered really well in the care home and so enjoys his cooked breakfasts with three course lunches and evening meals. He celebrated his 96th birthday a few weeks ago. However, I still get tired very easily and find that I need to listen to my body when it needs a rest otherwise I feel ill and my skin colour goes grey when I become exhausted. It’s so frustrating when you have a mountain of work to do, but no energy to tackle it! My younger son has just finished his teacher training course and wants help this week to clear his rented flat and to find new accommodation in Burton on Trent for this August before he starts his first teaching job in Tamworth in September.

Hope your taste buds return soon and you continue to respond to your current treatment.

Love Jan

[HelenParticipant]

Hi Andy
How was Belgium? I’ve never been there. I understand they Belgians make good beer!
I’m not getting headaches this time so maybe I just had a bug, I’m still ok really, one or 2 rough days each week but pretty good overall. Fingers crossed it stays this way. Still no sense of smell or taste, and irritatingly numb fingers toes nose and tongue! I’ve put on so much weight the last few weeks as I desperately try everything just in case I suddenly can taste it!

Hi Jan
The kitchen sounds as though it’s coming on… It always seems to take longer than you expect.. We had ours done when I was unknowingly becoming ill with myeloma back in 2009- I just thought I was working too hard then coming home and cleaning after the workmen, so the exhaustion really had a cause! I think the tiredness when you want to do stuff is probably the most frustrating thing about this disease. We are now going to sell our house and get something smaller, so the sorting out has begun- I can’t believe how much stuff we’ve accumulated over the years!
My son has just done his final recital for his degree – postponed as he injured his hand! I’m hoping he finally realises that musicians need to have alternative careers in order to pay their bills… Unless they are very lucky and get to work with popular bands.
Love Helen

[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

[janwParticipant]

Hi Helen

Good news about your son completing his final recital for his degree. I hope he manages to achieve a good result and find work which he both enjoys as well as pays his bills. Will he be staying with you at home? You will certainly have your hands full trying to scale down your belongings and items before you move into a smaller property. It’s exhausting work, which I can fully appreciate after trying to completely clear my Dad’s four bed house before the new owners move into the property. Luckily my brother is able to help me with the heavy work and the regular visits to the local tip. Our garage is completely full with bags of items to be taken to charity shops from my Dad’s property, together with all of my youngest son’s contents of his last rented flat before he moves into new unfurnished rental accommodation in mid August.

Unfortunately my latest light chain results this month increased sharply to 1,500, therefore I’m back on the threshold for further treatment depending on my results in September. It’s time to quickly book a holiday. On the positive side, I’ve been very fortunate to achieve five years remission this September since my SCT in 2010, which is far better than the predicted two to three years which I was forecast in 2010.

Love Jan x

[bandityogaParticipant]

Hi Jan
sorry to hear your FLC have increased, book that holiday and enjoy every day without treatment.

We are off to Northumberland for a few days. Ian can’t fly yet until he gets the results of his SCT which should be end of August. At his last meeting with the consultant his FLC were 42 which is the lowest they have ever been. We are hoping for a good remission but you never know with myeloma.

LoveMaureen x

[HelenParticipant]

HI ANDY, JAN, MAUREEN AND CYGNET, I JUST TYPED A VERY LONG REPLY AND TO EACH AND EVERY ONE OF YOU, THEN I ACCIDENTALLY PRESSED THE 2, ABOVE RIGHT, AND LOST THE LOT!
Suffice to say I’m not going to repeat it all.
Briefly
Bloods stable and I’m still remarkably ok. Bad tempered and grumpy but the old man assures me there is no change from normal!!!
I’m now starting cycle 10 of Pomalidomide and have dex insomnia! I’m going to have to endure the side effects as the prospect of quality of life on the next available drugs would be worse I think.. When I said that at clinic they agreed with me!
We are planning a trip to Germany later in the year,
I’m doing stuff but resting too
Son returning home next week … With more luggage! No where to put that and he has to find a job!
I’m enjoying watching the old man painting the holiday house.
We might live in it when we sell our house so won’t do much to it for the time being.
Andy …good luck with cycle 21
Jan …I’m so sad to hear about your light chains, I do hope they go down again and you can put off the evil day of recommencing treatment so you can use the drugs for as long as possible, we really have to trust that the medics make the right choices for us don’t we?
Maureen …have a lovely time in Northumberland … I wandered round the gardens in Alnwick and Cragside for a time last week as we had friends staying, both very beautiful.
Cygnet.. I hope those of us further down the treatment line don’t frighten you. It’s a tough road but there is a lot of time available to most and we have to fill it with good stuff with the people we love. I have to say that in the last 4 years I have done a lot more than I would have done had I not had myeloma. Time becomes increasingly precious, so use it to it’s best advantage.
I shall now stop this dex fueled ramble and try to sleep!
Love Helen

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

[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, 4 months ago by  andyg.

[mhnevillParticipant]

Hi Helen and Andy

I realise I am answering the wrong thread, but hopefully you’ll receive it!

I’m sorry you are both finding Pomalidomide so difficult. I can see where you are though, in a catch 22. It is important isn’t it to get as much quality of life as possible. It’s a shame that your body doesn’t eventually tolerate the drugs with less side effects. Do they adjust the doses or is there only a standard dose?

Although still in remission I find the tiredness a real proble. If I’ve something I really want to do I can usually summon up the energy, but if I didn’t force myself I could easily just stay at home and vegetate.

I must say I don’t have the emotional energy to come on herr very often, but feel guilty about that.

Still, we can’t afford to give in can we! I feel we are the lucky ones on here as we are still here to have these battles. Let’s hope we have lots longer so that new treatments may come through or the current drug dosage and/or side effects become more manageable.

Every day is a gift.

Love to you both.

Mavis xxx

[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

[HelenParticipant]

Hi Mavis and Andy and Jan if you are there
Another dex night – midway through cycle 11 and facing the long night of reading and late night TV – son back from uni and still no work! He says he needs a holiday ! – I’m finding this very stressful so have given up whinging at him , though a bad dex day tomorrow might galvanise him into action!,
I’m getting used to this pomalidomide stuff now- it’s not 100% predictable but I managed to get to a field in the middle of the countryside and negotiate rough ground and portaloos at a local show without giving up after an hour… I count that as a significant step, and I chopped down half a tree this weekend before handing the saw over to the men in my life, it’s this giving up the things I used to do that I find hard and losing independence – I was very worried that the lads would injure themselves with the saw as I’d not be much use on the first aid front these days.
Mavis, it is lovely to know you are still in remission and able to do the things you want to do.
Andy , I’ve not read any other posts for a while- how was Greece? We are off to Austria, all being well, in November, I plan to eat sacchertorte in Salzburg until I’m sick.
Jan have you started treatment again? Do let us know.
Love Helen

[andygParticipant]

Good morning Helen.

I’ve had a bad Dex night myself. Had a few other steroids thrown in too for good measure!

We we’re suppose to be going to Greece this coming Weekend unfortunately I’ve been in hospital since Thursday night with pneumonia! Not the ideal preparation for a holiday and definitely not something that should be on any MMers to do list. Fortunately I seem to be getting over the worst of it now and I managed to avoid ITU by the skin of my teeth. Recovery could be long and bumpy I’ve been warned but I guess we’re all used to a bumpy road now.

Hopefully I’ll be fine for or trip to the lakes in October.

Every day is a gift.

Love Andy xx

[janwParticipant]

Hi Helen

I know how you feel not being able to tackle those tasks around the house and garden, which were easy to undertake prior to myeloma. Last week,wWe purchased a branch cutter for our tree in the back garden. I didn’t even have the strength to raise the cutter in the air in order for it to reach the branch. Hubby now has to deal with all of the heavier jobs around the house and garden, which leaves me frustrated. I used to really enjoy planting, pruning and general gardening but I’m not restricted to dead heading the flowers! It’s good to read that both you and Andy are doing well on pomalidomide, especially with the recent depressing news about the drug being denied to new relapsed patients as from November. Removing hope for patients being able to obtain an effective treatment after two relapses is such a blow. I can’t believe the rest of Europe is able to offer and fund the drug, but not England.

My youngest son returned home after qualifying as a primary teacher. He has now managed to find rental accommodation in Burton and finally moved out this week. Although we will miss his company, I’m pleased he has found accommodation before he starts his teaching position and brings cold germs into the house.

As regards my increasing light chains, I’m now in the danger zone according to my consultant. I have to wait for last week’s test results to see whether my light chains are continuing to increase, which will another test asap before a decision is made to commence treatment. Fingers crossed, the results will show some decrease which will provide me with a few more months before drugs. A few more months without treatment is a blessing and a terrific bonus.

Take care.
Jan x

[janwParticipant]

Hi Helen

Unfortunately last week’s light chain results increased by a significant amount and I was called back into clinic. I start treatment as soon as the hospital can organise the start of my twice weekly velcade injections. Came home this evening from clinic with a big bag of drugs, which certainly brings back not so fond memories of the CDT treatment five years ago.

Jan x

[HelenParticipant]

Dear Jan
I’m sorry to hear about the move to treatment again- you will find it manageable but it’s such a blow to know that it has relapsed to this extent, even though it’s been on the cards for such a while. I found Velcade a bit unpleasant- it gave me peripheral neuropathy the 2 days after I had it, but always settled back to normal every cycle. Hopefully you won’t have any trouble with it.
I did find that I got more energy and stamina back as I progressed on it, despite the dex. You are right about the pomalidomide exclusion from the cancer drugs fund- this is very bad news for us – especially those who may need the drug after November – I’ve signed a petition on 38% against the move. I only hope it works.
It’s good news that your son has moved, mine is still looking for work but it’s a slow process !
I’m hoping all goes well for you – I’ll keep my fingers crossed that it’s all a smooth path. Do you have far to travel to get the injections? That’s a nightmare for some people as you spend so long in the clinics!!
Take care of yourself Jan
Love Helen

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