[HelenParticipant]

Hi Andy
Kefalonia eh- we still haven’t been to Greece together! I’ve been a few times but Tim isn’t very keen on hot places (redhead!) I think we might look at Italy again later in the year.
I think I’m finding the Daratumumab a bit more difficult- apparently there are very few side effects but I’m getting a few several days afterward- headache, muscle ache, diarrhoea and nausea. I’m not sure what to expect next – anyway I shall persist until it stops working!!
Hi Maureen- hope you have a lovely holiday despite the uncertainty of the results- let’s hope they’ll stay around the same level- I’ll keep my fingers crossed.
Love Helen

[HelenParticipant]

Hi Sue
I was in complete remission- no mm cells on BMT and zero light chains – this lasted about 6 months then they started to come up above normal again- took a full year after this before I started treatment again.
I too agonised over the decision but I was glad I took it.
One of my friends has been on it now for 5 years and is doing really well.
Love Helen

[HelenParticipant]

Hi Maureen
Hope Ian is still going strong
And Andy – how are you getting on? I keep reading (and enjoying) your tweets ( I’ve forgotten how to do it)
I’m ok with the Daratumumab but the light chains remain around 450 – I’m staying with the trial as stable numbers might be the best I get from it, just got to see what happens. I’m on the fortnightly infusions now -having had 9 consecutive weeks – so have taken the opportunity to go away – Cornwall this time- so I’m off to the Lost Gardens of Heligan now – and the weather is fab
Love Helen

[HelenParticipant]

Hi Sue
I was on the same trial back in 2011 and after transplant I was randomised to Revlimid which I took for 15 months until I relapsed. I’ve been on the various other anti myeloma drugs continuously ever since having had no remission at all.
I too had the diarrhoea problems and tiredness as side effects but all very manageable- I went to New Zealand and travelled as much as possible then- which was great and I’m so glad I did it since I’ve not really had the chance since.
I really felt that revlimid kept my disease damped down for that spell of time.
Good luck with your decision.
Love Helen

[HelenParticipant]

Hi Sabs – I was never on Carfilzomib, there weren’t any trials available when I needed one! Then it was refused funding- the regular story! Hope your partner gets on ok with the trial.

Hi Jan
I’m sorry to hear you are bogged down with a cold- I’ve been on GCSF and immunoglobulins for the last few months since my second bout of sepsis last year – it has been very good for me as I’ve not had the infections and colds I might have had – big bonus!
It was me in The Mail – not exactly what I said but close – I did well out of Pomalidomide and it’s a great pity that so many other people were denied it for a year or so.

We are just back from our holiday with my mum – she had a great time and is a bit sad that it’s over- there were 9 of us for a few days, gradually dwindling down to 3 as the week wore on. We were in Keswick and had the most brilliant weather, which always makes a big difference. We did some little
walks around beautiful gardens and houses and had some nice meals out.
love Helen

[HelenParticipant]

Hi Jan
– your dad sounds like my mum – she’s fitter than me!! At 90 she’s a bit forgetful and arthritic but she can really get a move on when the painkillers are working!
I’m sitting here right now having infusion 2 of cycle 2, no ill effects but it takes all day to get it given! It’s taking longer today as it’s after a bank holiday- why they don’t bring in extra staff on these days I shall never know! I’ve been here since 8.30 and the drug was ordered at 10.30 and it has taken pharmacy 4 hours to prepare it – so I won’t be leaving until 6.30 – very wearing.
My light chains haven’t done anything much this month just stayed at 480 – so another month and we’ll see what’s happening- fingers crossed that it drops a bit more.
I’ve found the fatigue from the stem cell and the various chemotherapeutic drugs a big problem, and never really got it sorted. I think I now consider it as the norm now- but hopefully you will soon get your energy levels as near to normal as possible.
Take care

Love Helen

[HelenParticipant]

Well, hello everybody- I’m now 4 weeks into the Daratumumab study – bit of a reaction at the first infusion so it was given very very slowly and I had to stay overnight- second infusion wasn’t so bad and only took about 8 hours- last 2 have been on target at around 5 hours – it’s still a whole day in the hospital though – every week for 8 weeks, then it goes fortnightly for 4 moths – then 4 weekly until it stops working. So we shall just have to see how it goes – light chains to be tested next Tuesday- fingers crossed that it is working!!!
The 90th birthday party seems to have been a success- grandma had a lovely time, so we head off to Keswick next week for a little holiday with her.
Thanks Tony for your good wishes and I shall hunt out the restaurant- always good to know about the better places beforehand. We are staying right in the middle of town so there can be lots of short walks to the pubs and restaurants.
I’m hoping for some good weather though – it’s very cloudy here – maybe it will change.
Hi Andy and Maureen how are things going with your new treatment regimes?

Love Helen

[HelenParticipant]

Hi
Any thing well washed and cooked thoroughly should be ok and yes avoid prepackaged
Helen

[HelenParticipant]

Hi Maureen and Andy
I’m just finishing cycle 31 of the Pomalidomide and start the Daratumumab next Tuesday- just hope it works – fingers and toes all crossed!!
Hope Ian does well on his next regimen and Andy – the same applies to you too.
Our trip to Amsterdam was very nice though it rained a lot, the next jaunt is to Keswick at the end of April as mums birthday present.
Love Helen

• This reply was modified 7 years, 8 months ago by  Helen.

[HelenParticipant]

Hi Maureen
I’m sorry to hear what you say about Ian’s treatment options- it’s not easy to deal with- when you know that the drugs are out there – NICE have said no to Carfilzomib too and Daratumumab isn’t through yet either. Have they suggested Bendamustine for Ian? It’s my next one if things don’t pan out with the Daratumumab trial.
I was lucky to get a place on it as it has reached its target numbers. I start it on 28th March- hopefully it will work but it’s only successful in 30% of patients so we will have to see- meanwhile I’m on cycle 31 of Pomalidomide in the hopes that the light chains can be kept in check until the last minute.
I’m looking forward to our little trip to Amsterdam on Friday and you have some very exciting things planned for your London holiday- I hadn’t thought about going to dine at The Ivy – if my sense of taste comes back I will have to think about it!!
Love Helen
Hi Dawn
I’m really pleased to see that you are going strong still on the revlimid- do as much as you can with the remission and enjoy it as much as you possibly can- I think it really helps keep you positive and distracted from the bad stuff if you’ve got nice things in the planning stage – all the time! I lurch from month to month- not booking anything until the last minute but I enjoy the plans – it’s a different way of living but a pretty good quality of life at the minute.
Hope all continues to be well
Love Helen

[HelenParticipant]

Hi Rebecca Ann Andy and Jan
Hope this post finds you all in a tolerable state -and thank you for your supportive replies to which I am only getting round to replying! Very rude of me.
I’m still living in a furniture store but it is gradually getting sorted and a lot of stuff is heading for the auction room!

I’m on cycle 30 of the Pomalidomide but next week I’m going to see about the Daratumumab trial as my light chains continue to rise relentlessly. Keep,the fingers crossed that this is an option- they did say that there wasn’t much left in the cupboard!

However I’m now at 6 years and a week since diagnosis- much longer than predicted a few years ago when there wasn’t a donor to be found and the cytogenetics changed.

So, what else, we go to Amsterdam in 4 weeks, and are planning my mums 90th birthday party! Lots of weeks away booked for various weddings and birthdays- just hope I can go on them all – as I say – fingers crossed!

Love Helen

[HelenParticipant]

Dear Eve
How are you getting on? How was Christmas? Are you home yet and hows the old dog getting on? I think you are so very adventurous and I love that you just got up and went on your trip, turning dream to reality, keep going girl.
Let us know how you are doing
Much love Helen

[HelenParticipant]

Hi there Ali, Jan, Ann, Denise, Rebecca and Melanie and many thanks to you all for your kind replies. It’s nice to know you are out there.
I’ve found this milestone a funny one as it suddenly seems quite a long time now since this journey began and I feel relatively good. I’m not as angry about the situation at last… That’s something that has taken a very long time to get to grips with!!
Ali, I try every day to be uncomplaining and usually lose the plot by lunchtime, then start yelling about all the things I can’t do anymore like opening jars and lifting heavy pans- I find you can’t get the staff!! I bought a gadget to take tops off now!
Today is a Dex day ..hence the rambling!
An update on the rising light chains in October/November when they crept up to 271, today they are 209
So hopefully another slightly higher plateau.. Needless to say I’m very relieved. Time to book another holiday I think, while I have another month respite.
Take good care of yourselves girls
Love Helen
PS has anyone heard from Andy?

[HelenParticipant]

Hi Jan
I waited for 4 weeks after finishing chemo for stem cell collection then 4 weeks after that for transplant, but I’ve only had the one transplant and I think it’s unlikely that I’ll have another as my cytogenetic problem is one where auto transplant is least effective, but who knows what might happen if I run out of other options.
You look like having a busy few months ahead of you with everyone else as well as your treatment!
I’m going to start a new thread now, this one is too long.
Love Helen

[HelenParticipant]

Hi Jan
I’m not too good at responding these days! Out of signal predominantly.
Glad to hear the velcade is working- I had to have the reduced dose as it affected my legs quite badly but it did give me a few tolerable months.
When do you anticipate having the next transplant? And I think I’d better do as Mavis asks and start a new post, this one is too long now.

Hi Maureen
It’s so good to see that you and Ian are getting out and about, we had a lovely trip to Austria in November it’s a lovely place, didn’t get as far as Vienna. I’ve not got any holidays planned at the minute… Too much to do in holiday house at the minute, not that I’m doing any of it.

Hi Mavis
I’m glad to see you are still ok, and yes you are right, this post is in too many pages now so I’m going to start another one next time I post.

Andy, how are you doing at present?
Love Helen

[Author]

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