This topic contains 42 replies, has 11 voices, and was last updated by 
mhnevill 6 years, 2 months ago.
Hope all three of you handle your next round of drugs and that they remain effective. I don’t often comment these days, there are times when I need to escape from Facebook Support and discussion forums and try to break away from the word myeloma. Easier said than done.
Pre myeloma days we lived in Keswick, wonderful times, wonderful area, my favourite walk is Buttermere! Helen, if you eat out have you been to the Case Bella in Keswick, good food, good prices, nice people. I envy you that visit.
Stay well.
regards
Tony F
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
Hi Helen
That’s really good news you have only experienced only a small reaction to your first infusion of Daratumumab and your second infusion wasn’t so bad. It’s always worrying when you start a new treatment because you haven’t a clue as to how your body will react to the drugs and you have to wait for the first few sets of blood tests for your light chain results. As you say, fingers crossed your light chains will show a decrease over the coming months. Hopefully as your body gets used to the infusions, then they can be given a bit quicker which will mean less time in hospital.
I had my second sct last September after 8 cycles of VCD. Following the sct my light chains were around 45, but have begun to slowly increase to around 95 last month. The results are very similar to my first sct which managed to provide me with five years of remission. The second sct was much easier due to me being more prepared, in better health and the nausea was mainly kept under control with three different drugs. However the recovery period is still very slow, with fatigue being the major battle.
It’s good to hear your Grandma had a great birthday party. My dad is due to celebrate his 98th birthday next month. He moved into a care home two years ago after my mother unexpectedly died. She was still running her own business up to the age of 86 years. In the care home there are around seven residents who have all recently celebrated their 100th birthdays. Up to the age of 95, my dad always came abroad with us on holiday. He is still very active with far more energy than I have at present. He went to the Andre Rieu concert in March at the NEC, together with a James Last concert in February. Let’s hope I’ve inherited some of his genes.
All the best for your new treatment regime.
Love Jan
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
Helen – <span style=”font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; font-size: 13px;”>NICE have said no to Carfilzomib</span><span style=”font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; font-size: 13px;”> </span>
My significant other is on a Carfilzomib trial (Cardamon trial) for newly diagnosed and another trial is being run for relapsed – I know that there are other hospitals running the same trials just not sure which other than the one we are at (UCLH).
Hi Helen
I know what you mean about the length of time it takes to receive your chemo in hospital. When I was visiting hospital twice a week for the Velcade injection, I usually had to wait 2 to 3 hours to receive the injection, which combined with a two hour return journey made the whole day written off for one injection. I believe some hospitals are now experimenting with letting patients undertake their own Velcade injections at home just like the GCFS injections, but with the high cost of each Velcade injection then I should think compliance is a big issue.
Was it your details in today’s The Mail on Sunday article about myeloma and Pomalidomide? I thought the article contributed well in raising awareness of myeloma and offered hope with future treatments achieving longer life expectancy. Let’s hope your light chains reduce with your current regime. My fatigue has also been a big issue since diagnosis in 2010. I’ve spent most of the last few days in bed totally wiped out with a cold virus, which is my first cold following the Sct last September. I think that I caught the virus from visiting my dad in his care home. Unfortunately any cold/flu virus tends to increase my light chains by around 300 for a good couple of months before the levels reduce later, but not to their original numbers prior to the virus.
My dad has just booked tickets for December to see Andre Rieu again. His latest set of blood test results shows a strong immune system and good overall levels. The doctors don’t comment much about his levels because apparently they don’t have that much data on 97 year olds, which should change with so many more people living longer.
Take care.
Jan x
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
Hi Helen
Ian had really good results, after 2 cycles his FLC are now 93. We should get the results of cycle 3 next week so fingers crossed it is still working. He has more fatigue with this treatment and had problems with his bowels but that has calmed down.
We were in Ambleside on 2nd May for a couple of days and had really good weather. We walked to Rydal Hall but Ian was very tired so after a coffee and cake we got the bus back. We also took the boat into Bowness and had a huge ice cream.
We visited a garden near Windemere which was lovely and run by volunteers.
Glad your mum had a nice birthday, we should have met up. I hope the daratumumbab isn’t causing too many side effects and works for you.
Ian has had an awful cough for some weeks so the consultant has put him on antibiotics. I have got a bad cold and hoping it goes soon.
Love Maureen
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
Hiya Helen
I’m doing ok at moment, just returned from a week in Kefalonia, I’ve just started cycle 3 of MUK 8. Not much movement on the PPs front yet. I’m feeling ok though just got the usual UTI that seems to be a constant companion of mine. Hopefully going to Belgium later in the month.
I’m glad that the Daratumuab is seemingly keeping you stable. It’s what I would settle for with MUK 8.
Hope you have a great time in Cornwall and the weather is kind to you.
Every day is a gift.
Love Andy xx
Hi Helen
Hope you enjoyed your holiday in Cornwall. We went a few years ago to Hayle and we loved it.
Ian’s latest results show the FLC have risen by 20 to 113. I know it’s not a lot but wonder if the treatment has stopped working. He has just finished cycle 5 and we are off to Ibiza for 10 days on Sunday so we won’t know the results for another 3 weeks. Trying to stay positive.
I hope you are still doing well on daratumumbab, it’s getting more difficult to treat.
Maureen x
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
Hi Maureen
Hope you and Ian are ok- I’ve just been looking at the clinical trials web site (clinical trials.gov) and it seems to suggest that the early access Daratumumab trial has been extended- it might be worth investigating to see if that is really the case and if Ian is eligible to go in it.
Love Helen
Hi again Maureen- this is the American site so I don’t know if the drug company are able or likely to request extensions of trials outside the US – anyway asking doesn’t harm- after all ‘shy bairns get nowt’ as we say round here
Love Helen
Hi Helen
Thanks for the info but the trials in Scotland for daratumumbab are closed. We saw the consultant yesterday (the one we don’t like)and he was very negative, he has given Ian 2 weeks off treatment to see how he feels but if his FLC have increased again he will be taken off treatment. Only option open now are xomabib and mephalan given intravenously. We asked about giving stem cells and he didn’t think it would be possible but we asked to try so waiting for the results in 2 weeks time and very anxious. If his FLC have risen I will be asking to see the specialist at The Beatson in Glasgow again.
I also asked about going down south for trials and he said it would be possible but because we can doesn’t mean we should. He said trials were like picking something out of a bag and seeing if it works but we would be willing to do it. Ian doesn’t want to give up yet.
Hope your treatment is keeping your FLC stable and not causing too many side effects.
Maureen x
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