Stem cell transplants for blood cancers

A group for people to discuss stem cell transplants for blood cancers such as leukaemia and lymphoma. This can include transplants using a person’s own stem cells or stem cells from someone else (a donor).

Insurance

RV8
Posted by

Hi,

does anyone have any recommendations for travel insurance. The automatic ones we have with the bank won't cover Lymphoma.

Cheers

John

John RV8
greg777
Posted by

Hi RV8,

I wondered if you had come across the below thread as yet? It is where a lot of members have collected advice about travel insurance. I hope you find it helpful.

All the best

Greg

community.macmillan.org.uk/.../recommended-travel-insurance

johnr
Posted by

Hi John, depending on the bank some have paid an extra premium and the bank cover has been maintained, this does though depend on which bank as not all offer the option, but worth contacting them to ask.

Also if you let us know where you are planning to go to we may be able to give you a steer i.e. if its main land Europe then Euro Tunnel are worth trying as you don't have to go through a screening process which is a real pain.

John 

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
moomy
Posted by

Hi,

Johns reply is really good, Eurotunnel usually do an excellent policy for Europe, but daughter (who travels more widely for work as well as pleasure) found Insurancewith offered her a good, well priced annual policy and they didn’t quibble when she had to cancel one trip, paid out easily.

hugs xxx

Moomy

Mum2k
Posted by

Hi everyone,

although we are the parents of someone who has had a stem cell transplant, I saw a link for insurancewith on this forum- my hubby and I are going to Canada but as he has artificial hips, and had 2 previous deep vein thrombosis even for insurance for pre existing medical conditions we were quoted nearly as much as what the flights cost us from other companies- I phoned insurancewith as I didn’t know if they covered other conditions other than cancers, and they did and for 19 days in Canada with his medical history it is £115 which is excellent- when I spoke to the lady about it she said it’s because other companies have standard questions- which they did and were all the same- but they look at how they affect you now and how they are controlled and it’s based on the individual! So I’m a nurse and I look at it as being very person centred! 

Hope this helps other people.

And Katy had her bone marrow biopsy results and she is totally leukaemia free- never cured though they said but in complete remission. She’s doing really well and has had a few bugs but managed to throw them off as her CD4 is excellent apparently! Probably better than ours now as we’ve picked up the bugs as well but it’s floored hubby 

KT’s mum 

Paul1969
Posted by

Hi

I have also used insurewith since my stem cell transplant and have always found them to be reasonable even in the early years post transplant. I originally spoke with one of their medical underwriters and have used them ever since and now only pay about £20 more a year than a standard policy.

after 5 years they told me that I was cured of ALL ( although as they said you can never say never with life and medicine) and there was no reason that it would return.... so just give it time!

Paul

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RV8
Posted by

Thanks everyone for your replies. All interesting and useful. Interestingly, insurewith didn't want to know about my lymphoma online. They phoned me today, still wouldn't allow for the lymphoma but charged £700+ for my cardiac condition. An interesting point that comes up is that if your spouse has their travel insurance, your condition, if not declared, will invalidate their insurance. In other words, if you have to cancel a holiday because you are sick, their policy will not cover them for cancelation fees. Found that out last year, very expensive!

Today, however, Staysure have covered my wife and I, accepting the lymphoma and cardiac condition for £500 for multi trips to Europe. So I'm happy with that.

Cheers all

John

John RV8
ChrisMCL
Posted by

Hello group members,

Interesting to see the experiences of others seeking travel insurance.

I would be keen to hear from anyone who has successfully obtained travel insurance for more 'exotic' travel. Sounds as though I may be being unrealistic:

I was diagnosed with stage 3 Mantle cell lymphoma  9 months ago at the age of 64.

Underwent the Nordic Protocol followed by high dose chemo with autologous stem cell support, completed in Nov 2019. Currently receiving bi-monthly injections of rituximab.Now regaining stamina and energy, feeling well and splenomegaly hugely reduced.

I have wished for some time to travel to Costa Rica on a wildlife holiday. Now wondering:

1. How travel insurance companies are likely to respond to my request for travel insurance.

2. If anyone has any safety advice for NHL patients travelling to this part of the world.   

Thanks in advance. Chris (topher)

 

ChrisMCL
moomy
Posted by

Hi ,

daughter went through a few companies; as a freelance musician she travels widely and at one stage it was world-wide tours. 

She now has an annual policy with www.insurancewith.com and they happily paid out when she was too unwell to have a holiday a year or so ago, no quibble at all. 

If you check out my profile you’ll see she still has ongoing problems though is cancer free. 

one bit of advice; talk it over with your team! They may well have strong views as to when and where you would be safe to go. 

whatever company you choose it’s useful to chat on the phone; I think some are getting used to some maintenance drugs used these days and won’t argue. 

as to your venue; I have no idea but I would think as long as you’re with a tour company it ‘should’ be ok. 

Best wishes and hugs xxx

Moomy

ChrisMCL
Posted by

Many thanks for your advice moomy.

I will pick this up with my team this week!

Hugs, xxx

ChrisMCL
Fulhamboy
Posted by

Hi ChrisMCL

I managed to get my wife insured fully with insurancewith, they cover most existing conditions, lots of questions asked re the condition as you would expect. First time for cover 10 days following her 5 months in hospital with AML and all the chem ect involved and that was £45.

Just done a years cover for Europe only for £104. 

Cruises are substantially more expensive and may not even be covered.

Tropical/long haul I would also to be much more, but bearing in mind the mainstream companies out there charging thousands of pounds, it may be woth giving them a call.

Very nice telephone staff and much easier than online as you can go into full details when asked.

Good Luck

Nick

Thehighlander
Posted by

Chris, just to add that if your team are happy for you to go you must ensure that your notes are marked to show this.

I talked with someone last year who were caught out as they had not had an all clear from his team that he could do the trip and resulted in the insurance company not paying out - fortunately it was in Europe and did not require repatriation.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

ChrisMCL
Posted by

Many thanks fulhamboy and the highlander.

I will make this trip somehow!

Chris 

ChrisMCL
johnr
Posted by

Hi Chris, have you check which inoculations you need to have? here is a link to some info if not and whilst its Scottish nhs I assume its the same for all. 

https://www.fitfortravel.nhs.uk/destinations/central-america/costa-rica

If you need inoculations then these will need to be discussed, stating the obvious.

John 

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
fanilow
Posted by

Hi Chris 

My husband is 5 years post stem cell transplant for high risk AML. We have an annual policy which includes cruise cover from AllClear.

We are currently on a cruise crossing the Panama Canal. We stopped at Costa Rica and all the advice we were given and read was to be aware of the mosquitoes. We took Jungle Fever with us but opted for an excursion which took us on a scenic drive, stopping only in built up areas. We would have loved to do some of the wildlife tours but felt the risk was too high. We also only ate and drank on the cruise ship. Beautiful country and lovely to experience but we felt we definitely made the right decision especially as we met a lady on the cruise who used to live in Costa Rica and assured us 'you will get bitten'. Luckily with the precautions we took we didn't get bitten or ill.

fanilow