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Trip to Cuba

David has had cml for three years now and his Consultant is concerned at the moment that even the increased dose of 600ml Glevic is not reducing the disease.

We have been invited to join friends for a two week trip to Cuba in four weeks time but are concerned how this would affect David i.e. vacinations, long flight etc.

It really would be the trip of a lifetime and will probably be the last chance we have of going but we don't want to accept if it will affect David adversely.

Does anyone have any experience of this or any help or advice they could offer please. We need to make the decision in the next couple of days and are just at a loss on what to say at the moment.

Thanks and love to you all.

Sue

Hi Sue

I've not been to Cuba but since Dx I in 2005 I have travelled to Thailand. No problems at all - although I was still on Hydroxy as my Consultant wanted to wait until I got back to put me on Glivec. It was a Xmas holiday that had been arranged before Dx. Since then I have flown on several times, but only in Europe. Not I hassen to add due to CML just other events, in fact we are planning a short break to New York - hopefully at Easter.

I would check with your doctor about vaccinations - though I can't imagine a problem. As for the flight I just make sure I drink plenty of water to prevent dehydration.

What level is David stuck at? I've been on Glivec since Jan 06 and can't get below 0.1 - last one was 0.5 but was told by my consultant that the diffference was insignificant.

Marian

Marian

Hi Sue

a couple of things spring to mind

firstly if David is generally feeling ok then there can't be too many reasons not to go, there is no problem with vaccinations and no problems - other than the normal in flying. I have done a few long flights since dx and had vaccinations without any difficulties.

secondly you should think about travel insurance, although if David is generally ok then he is unlikely to have problems whilst away.........this tricky question is really your choice.

thirdly why not ask your consultant, email him to ask if he has any concerns, mostly they are happy for patients to travel and have fun and if says not to travel then the decision is made

fourthly, and I did this every holiday, bar one, BUT only with my doctors approval was to stop my medication for the duration of the holiday. I had bad upset stomachs and did not enjoy running round finding the nearest toilet especially whilst on holiday. Generally speaking one short break will not cause any difficulty.

lastly you also seem to be to be a bit unsure about how well the glivec is working and what the next steps are, so I hope that you both get this sorted out.

I hope that you go and that you have a wonderful time, my husband is desperate to go to Cuba.

regards
Susan

glivec, bms and a 'mini' transplant

Susan

Marian/Susan

Thanks very much for your comments and support.

David has achieved what is described as a "Log 3" reduction but we're not too sure how this is expressed mathematically.

His Consultant appears to be concerned that he is not continuing to make progress towards a zero reading having been stuck at this level for some 6 months since increasing his dose to 600mg. At this time it seems pretty certain that unless there is a radical downward shift he will be put on 800mg following his next consultation in a few weeks time.

I would not be comfortable in him stopping the Glivec and feel that we are now much better informed to make a rational decision about holidaying in Cuba.

Thanks again for your help.

Best wishes to all.

Sue

Hi Sue

I have had CML for over 3 years now and after the initial shock I have started to travel again.
My wife and I are in our mid sixties and recently spent 3 weeks in Southern India and travelled around extensively by car and train.
We had all the necessary jabs for India, quite a number, to no ill effect. Whilst there, I ate very carefully, no uncooked food except unpeeled fruit, washed hands very regularly and drank only bottled water and refrained from alcohol . We stayed in clean hotels. We were untouched by any tummy bug etc.
I think Cuba would not be a problem and has I believe a very good health service.
You can get travel cover - see previous posts.

Go for it and I am sure your CML will not be effected. Now is the time to see Cuba before it changes post Fidel.

Barry Allsop
Aged 64
Diagnosed DEC 04
95% PH+
400mg Glivec
CCR June 05
MMR Jan 06
Test result Sept 2007 showed 0.005%

Dear Sue,

Very few patients will reach PCR negative on Gleevec alone, even high dose Gleevec. PCR log 3 reduction is where the doctors say that there is less risk of relapse and it is the current goal of Gleevec therapy. David is doing very well if he is at Log 3 reduction.

Check with the doc regarding vaccinations and it should be fine for David to go. My husband has had CML for 6 years. 2 years into his CML, he went for a business trip to USA, which is a long flight from Singapore where we live. He did get occasional cramping so he moved about the airplane a bit. Are David's blood counts in normal ranges?

My husband is PCR 3 log reduction and his doctor is very happy with this result. Please take a second medical opinion before going to 800mg to reach PCR negative. High dose Glivec can give more side-effects and PCR values fall with time on Glivec. My husband's PCR is still decreasing.

Anjana
wife of Roy
d/x Jan 2002
400mg Gleevec
PCR 3.9log

Hi Sue,
Don't miss this for the world. Cuba is very special we spent 2 weeks at Guardalavaca in Feb/March 2006, this included 3 nights in Havana. We also spent 1 day in Santiago. The Cuban people are very friendly. No problems we had an amazing time. I would love to go back and see more of the island.
Our insurance was slightly more expensive for Cuba, I think we used age concern.
Have a lovely holiday.
Daphne & John
John diagnosed May 2003
400mg glivec 4 days, 300mg glivec 3 days per week
The above dose is the result of a bad reaction followed by a 9 month break. Glivec was then reintroduced slowly.
Test results undetectable for 1 year to date.

Y A H O O O !!! Y I P P E E E !!!

Number 1164 in the Zero Club

Zavie

Zavie Miller (age 69)
67 Shoreham Avenue
Ottawa, Canada, K2G 3X3
dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
3.2 log reduction Jun/07
3.6 log reduction Sep/07
3.5 log reduction Feb/08
e-mail: zmiller@sympatico.ca
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204
Yahoo ID: zaviem
YM: zaviemiller
Skype: Zavie Miller

Submitted by Barry Allsop on Wed, 2008-03-05 17:14.
Hi Sue

I have had CML for over 3 years now and after the initial shock I have started to travel again.
My wife and I are in our mid sixties and recently spent 3 weeks in Southern India and travelled around extensively by car and train.
We had all the necessary jabs for India, quite a number, to no ill effect. Whilst there, I ate very carefully, no uncooked food except unpeeled fruit, washed hands very regularly and drank only bottled water and refrained from alcohol . We stayed in clean hotels. We were untouched by any tummy bug etc.
I think Cuba would not be a problem and has I believe a very good health service.
You can get travel cover - see previous posts.

Go for it and I am sure your CML will not be effected. Now is the time to see Cuba before it changes post Fidel.

Barry Allsop
Aged 64
Diagnosed DEC 04
95% PH+
400mg Glivec
CCR June 05
MMR Jan 06
Test result Sept 2007 showed 0.005%

as previous post

as previous post

Y A H O O O !!! Y I P P E E !!!

Number 1165 in the Zero Club

Zavie

I have to commend your doctor for his dosing of John. Dr. Mauro of OHSU has shown that the minimum effective dose of Gleevec is 350 mg per day and John is now averaging 357 mg per day.

Zavie Miller (age 69)
67 Shoreham Avenue
Ottawa, Canada, K2G 3X3
dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
3.2 log reduction Jun/07
3.6 log reduction Sep/07
3.5 log reduction Feb/08
e-mail: zmiller@sympatico.ca
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204
Yahoo ID: zaviem
YM: zaviemiller
Skype: Zavie Miller

Hi Sue
Just to reassure you that travel is possible despite having CML and having to still take the medication .I was told that as long as my blood counts were within normal range there was no reason not to travel, so last November went on two trips to Thailand and then in December to Bali.At the best of times long flights of 12 hours are not comfortable;Cuba is less than this I guess but still a long trip.
If your blood platelets are up be very wary of flying ,I am told.
My advice would be to hydrate a lot a day or so before the flight and on the flight and if you dont do so already split the dose of the Glivec and take with or after a substantial meals.
My GP gave me a letter re my medication to the effect that I must keep it with me at all times just in case some ill informed customs official failed to understand ,and keep the Glivec in its original packaging I suggest.
I always pack it in my hand , or carry on baggage in one of those see through plastic bags that we package our liquids in to go through airport security-if it is a medicine on prescription you should have no problems.
I always take an extra 10 days supply with me in the event there is any delay in returning and also lock it away in the hotel safe in front office -not in the room
In Thailand if I lost it or it was stolen I could get a supply from a local international hospital but as you know at full price of say 2000 pounds for one month-I dont know about Cuba and availability.
I have insured my Glivec on my house contents insurance and can take it anywhere in the world -most insurers are hopeless when you want to add a named item like Glivec to all risks contents out of the home .One said to me why should you (I) be responsible for your drugs and said anyway you can get a replacement on the NHS;another asked me if I was a doctor!
So I signed up with insurers Hiscox who said we have done it before and no extra premium
One problem I had was the humidity in Bali and the high temperatures -walking in the heat left me soaked with perspiration(just like very bad night sweats but in the day)but I just drank lots of water and changed my clothes a lot.
I found I was very nervous about flying long haul again after dx as I used to travel to Asia every month as part of my job -and was dx in Bangkok and at the time had very high platelets and had to self inject with Heparin as a blood thinning agent before and on the flight back to UK:but it was all OK.
As long as the medical advice is that it is OK to fly suggest you and David go for it and enjoy the trip;I am sure that he will cope with still taking the Glivec
Best wishes
John W