DESTINY TRIAL

I was just wondering whether anyone had actually enrolled in Destiny. Or, in other words, if we did would we be the first and only ones to take the plunge? I appreciate it will be a while before results start coming through. I would be interested to know if there are any others considering this step or already taken it and perhaps what has prompted them to do so. Our reason would definately be hope of a reduction in Glivec side effects.

Lydia

Hi Lydia,
Yes I understand, I am very curious too but I think that at least the major sites like Liverpool and Hammersmith etc definitely had lists of patients waiting for the trial to open.
Olivia, its a shame that Edinburgh is not part of the trial- I know Glasgow is though. As far as whether you qualify or not, you need to be at MR3 (0.1%)or below for at least 3 consecutive PCR results for one of the 2 groups, or MR4 (0.01%) or below etc. for the other group. I am not sure what your current results are but I thought your were at MR3?

Side effects of imatinib/reluctant to change to nilotinib: I understand that to access on of the alternatives to imatinib i.e. dasatinib or bosutinib via the cancer drug fund, (which would certainly change your side effect profile, probably for the better and maybe even improve your molecular response) you would need to try nilotinib first.

Of course that might not be easy or desirable for some people and it is similar to the situation we found ourselves in in the early 2000's when access to imatinib required a 6 months trial of the dreaded interferon alpha!
Most patients faced with that particular challenge found a way to do it with the support of their doctors- who obviously knew that IFN did not have an effect on the disease for the majority- so it was a hurdle worth the jump to what was then a wonderful alternative. Of course it is different now with there being a choice (for most) of TKIs, but if you find imatinib is working for you clinically without affecting your quality of life too much then the pay-off is probably worth it.

DESTINY must be tempting though- the reduction to half a dose might solve a lot of side effect issues if you can keep a decent molecular response.

Sandy

Hi all

Like a number of others I am on a list waiting to be screened/have the initial testing done before entering the trial. I was told the other week by the Hammersmith that they were still waiting for the go ahead to start doing that. It may be that some already have their appointments fixed or have had them but I at least am still waiting to hear when I may be able to start.

Richard

Olivia, yes daily routine can become over-complicated, especially when you are 'required' to take therapy at specific times.

Re: Destiny, having a stable MR3 does mean that you would be eligible for the MR3 group (there are 2 groups- MR3 or less;MR4 or less). What I like about this trial protocol is the fact that you de-escalate rather than suddenly stop.

Best... Sandy

Hello All I am on the Destiny trial - I reduced my dose of Nilotinib on 29th January. Go back for a check up on the 25th February. Don't really feel much different at the moment to be honest but excited to be part of this trial. Will keep you updated with any news.

Kind Regards

Julie

When I went on a two week Carib cruise, forgetting my tablets. :)

Hi Sandy,

You may find this link interesting:-
http://www.lctu.org.uk/trial/trial_info.asp?id=101&tgcode=5&menuid=30
If the information is up to date, the answer would appear to be 12.

Regards
Lydia

Yes, oops indeed ☺ and just think, the only thing my wife left me to pack was my meds!

I don't post on here very often nowadays, so please forgive what might become a long post.

Yeah, we booked this cruise 12 months ago and because I had had an autologous stem cell transplant (an experimental procedure that didn't work and isn't used any more), the insurance quotes came in at around three grand for a single cruise trip cover. I decided to go with holiday insurance, but without cover for the CML. The first night on board, I went for my tablets only to find the tabs that weren't important had been packed - but the Glivec hadn't! I'll tell you what, finding that out on ship when you've just left Port and are setting off for two weeks, visiting a different Island almost every day is a very disconcerting feeling. What the heck can you do? I've got to admit that I didn't get too much sleep that night.
Anyway, the following morning I had decided that I should make the best effort to get the Glivec flown out to the first Island that we could reasonably get the tabs to, on time. It would have been no use the tabs getting there the day after we'd sailed. My son back home had tried to get in touch with Manchester RI, but because it was weekend, there was no one around on the reception, so he called a few different couriers to get the tabs flown out. None of them were interested apart from the post office who would tale £70 from him, but wouldn't guarantee the delivery date. A friend of ours works for DHL and he sent them to Antigua, hoping they would get there in time for our call at the Island, on the Friday one week after we had sailed from Barbados. The tabs left home in Lancs, were driven down to East Midlands airport, flown out to Cincinatti, then flown to Puerto Rico. That Friday we got a message that they would be flown to Antigua on the Tuesday - four days after we had left Antigua! Nothing we could do. 4 pm that afternoon, we got a call from admin omboard ship, saying the tablets had in fact landed in Antigua, but they didn't know where they were. We were due to sail at 5 pm, so if they had still been at the airport, we wouldn't have got them. 4:45, we got another call to say the tablets were at the DHL depot near to the ship and that they had sent someone round to pick them up. We got them with 5 mins left before we sailed. So the truth is that I only went without them for just over one week, but if we hadn't got them on that day, we wouldn't have got them at all.

Sorry for the long story, but there you go, that's what happened. MRI say everything should be OK and just to go for my normal appointment in April. Another funny story was when the ship broke down, we went into the corridor to listen to what the captain was saying about it and the wind blew the door closed behind me and Haze. 20 mins we were in the corridor with Jim jams and nighty on! Got some strange looks and comments. That was the day before one of the cabins caught fire. All hands to the pumps when there's a fire on a ship. They even launched a lifeboat in preparation, but it wasn't needed.

Final note - and back to the CML. Next month will see me celebrating (is that the right word?) 20 years from diagnosis. I don't post that in any selfish, triumphalist, bragging kind of way, but rather to hopefully give a little bit of optimism to the newly diagnosed on here. I also had a letter yesterday asking for permission to burn the stem cells that were collected at diagnosis and frozen. Apparently they are useless after that amount of time and need to be destroyed.

Dennis.

Well, that was certainly a holiday to remember. Funnily enough we are (or perhaps, having read your post, were!) contemplating a cruise this year. We'll definately remember to pack the Glivec; that comes first before anything else. You have given us an idea; it may be worth considering insurance without coverage for CML. Back to your impromptu trial,and not to go off subject, I understand once you are in remission a gap of a few days in taking the meds won't harm long term so keep fingers crossed for your next appointment and hope everything is ok. Very funny story though; that'll keep me chuckling for a few days. You are supposed to go on holiday for a rest from the stresses and strains of life; not give yourself new ones!
Have you considered Destiny? MRI (if your M stands for Manchester?) are supposed to be getting it sometime soon.

Regards
Lydia

Hi Dennis; still chuckling.... So good to know there is a lighter side to CML. Ask Sandy for my private email address if you want. Obviously MRI are not concerned about your Glivec 'time out' as they have not brought your appointment forward. You may still be eligible for Destiny. It is in their interest as well as yours to sign you up if they can.

Regards
Lydia

I might contact Manchester this week to register my interest. There are a few questions that need answering and I guess the best way forward is to talk to them directly. I'll let you know what happens.

Sandy, if you let me have Lydia's email address, I will contact her.

Dennis.

Hi Sandy and Lydia

Just an update on how things are going - I reduced my dose on the 29th of January and I now take one tablet in the morning and one tablet in the evening - one of the first things I noticed is that I don't feel as nauseous as I used to feel when taking the two tablets together. I have been back on the 25th February for a check up and I go back this Tuesday 25th for my next check up. I am not exactly sure how many people are currently on the trial but I do know that I am number 10 - I will enquire on Tuesday. I'm feeling fine and to be honest don't feel much different in myself as yet but it is early days. Still very excited to be part of this trial!

Hope you are all well and will update after Tuesdays check up.

Kind Regards

Julie x

Hi Julie... glad to read that you are doing OK and feeling slightly better on the reduced dose. Thanks for the update, many are curious I think ;o)

As you can see, the numbers are slowing increasing (currently 17) at that one trial site. I am not sure how many there are enrolled at the other major trial centres but will try to find out.
I think this discussion thread will run and run to I am trying to get this whole thread put on a dedicated page so people can update as and when.

Meanwhile, best wishes for Tuesday check up. Where you offered sedation for the first required bmb? or did you just accept that you had to suffer?

Sandy

Hi Sandy I didn't have sedation for the bone marrow biopsy - I just gritted my teeth!!!! I was told that if anyone really really didn't want to have a bone marrow test they would still qualify for the trial however I felt that I would do it as the information that they can obtain from the bone marrow is invaluable if not for me but for other patients and future research. The people who did it were amazing though and it didn't hurt that much honestly!

Will update after Tuesday still feeling fine x

Kind regards

Julie

Hi

Has anyone got latest update on the trail ?

Thomas