Hello! My husband was diagnosed a few months ago and we are still trying to figure out some of the logistics involved in having a low neutrophil count \ Ed's neutrophil count ranges around .4 to .8. We are wondering if people have found tricks to traveling? Do you get sicker from airplane rides? (family is all back east and we are in Seattle). We have been quite active...looking for anyone who has been backpacking since the diagnosis....any fears about being a day away from medical care? Do you carry antibiotics if you go far from medical care? we understand travel to other countries may be out of the question depending on medical care options. Ed 'feels' fine and we are hoping to keep up our active life style for as long as possible...but also don't want to take unneccessary risks. Anyone else out there in Seattle? Ed sees a great doctor at Fred Hutch/seattle Cancer Care Alliance. Sue

Hi Sue, I live in Australia. I have LGL My husband and I went around Australia last year for four months in our motor home and I made sure I took an antibiotic script with me. I did have a sore throat but luckily got over it without medication. If I go overseas I'll make sure I have it made up. I wonder about getting insurance for travel, might be a problem to get covered. My only symptoms besides the high white cell count, are mouth ulcers.I have six monthly blood tests. I guess we have to stay positive and not change our lifestyle. Pam.

Hi Sue, Here is Australia, the normal range neuthrophils is between 2.0 and 8.0. Since diagnosed with LGL in May 2011, I noticed my neuthrophils fluctuated between 0.82 and 2.1. I had a couple of trips with long range driving (10-12 hours) last year. I was feeling fine during the holidays. Since diagnosed, I always try to eat healthy and well. I would like to travel overseas in the future and still wonder which travel insurances will cover this condition. Herman

Hi Sue, I leave in Seattle too. I travel quite a bit for work and play and have taken several trips skiing and trekking. Always a nail biter on whether I can get permission by my oncologist ( Dr. David Dong) to leave the US.I always have blood labs before I go. But we work together. My challenge is I get so tired from working that I am out of shape to do these trips and seems take a long time to recover He always have me carry antibiotics: Cefdinir, Levaquin, extra acyclovir( for mouth ulcer break outs) a medical script for blood labs, and a thermometer so I can check if I can getting a fever. I bring my own blanket on flights and put it over my head on long flights to sleep, kinda acts like a mask, use Vick's VaboRub in my nostrils, and of course hand sanitizer and I don't get sick from the plane. I already take Sulfameth, Acyclovir and Fluconazole so I am pretty loaded up on a daily basis on antibiotics, anti-viral, anti-fungals. My counts seem to cycle between .9 and 1.2. I was hitting 3s when I was on Cytoxan, but now that I am off chemo and just on Cyclosporine, they have dropped to almost where we started 2.5 years ago. We are looking at trying Campath now. I hope this helps, you can also email me directly emoceri@gmail.com Elizabeth

Hi everyone My 26 year old son's had LGL for 2 years. He's doing well now on 15 mg MTX/week + fortnightly venesections for iron overload from transfusions in the first 6 months. A year ago, my other son was married in Argentina & we desperately wanted all our family to be there. Just a few weeks before, my son with LGL decided he could go with his haematologist's OK. This raised the issue of travel insurance for us ... His haemalologist wrote out the list of my son's illnesses, & his advice was to be honest & upfront. I researched around, & applied for my son's travel insurance online but had to give extra info by phone with the assessors. There was a flat refusal for his illnesses (tho coverage for everything else). We bit the bullet & decided we'd just handle it if anything came up. Family were there for the language & they gave us confidence about the standard of medical care there. We all had a fabulous family time & the break away did my son a huge power of good. We were really careful about bottled water/not eating dodgy foods & not overdoing it, & only once got slightly worried when he got dehydated from the hot weather. I hope our experience helps. Taking antibiotics is an excellent idea too. All the best, Karen from New Zealand.

Thank you Karen for sharing with us your experience. Did you try a few travel insurance companies? I would also like to take my family to Singapore and Japan for holidays in the future. Cheers, Herman

I know anything with the word "leukemia" (or "cancer") causes a knee-jerk reaction from life insurance companies. sorry to hear you ran into that with travel insurance, Karen! My husband's LGL is under control right now, but he still has to be careful exerting himself. He swims hard several mornings a week and is in pretty good shape, but if he is too ambitious (doing lots of yard work or big hike or something) he often "pays for it" the next day by being very tired or unreasonably achy. So if your husband experiences that too, I would just be extra conscious of pacing yourself and not beating up on yourselves if you have to spend the day after a hike just relaxing :)

My husband has more pre existing conditions than I care to mention, we found the travel insurance with our health fund was the better alternative. Because we are only overseas for a week and not far away, we didn't tell them about mine. That might have opened another can of worms all together.

I've been away from here for awhile - I am enjoying all the travel tips. I bring antibacterial wipes on the airplane to clean up the areas I touch on the airplane/hotel. I buy travel insurance in case I cancel my trip. I carry a mask in case I sit next to anyone who seems sick. If I am really tired I've taken some Prednisone for a boost (knowing that could be a double edged sword). I carry a Z-pac and medical info. My ANC is stable at 500, hgb 10's and feeling better than average. I don't dare go on a cruise or to Mexico, etc.

I was diagnosed with LGL after repeated infections in early 2012. I'm living in Sydney but originally from the UK. I traveled home with GCSF kept in the fridge on the plane. Also I took a script for antibiotics. I didn't even bother with the medical insurance as I didn't think they would touch me. Luckily the UK has free health care and luckily I kept myself well.

Hi L0calsh0p, what is GCSF?

I live in Spokane. Dxed in Jan 2010. MTX 7.5mg/week. Blood tests quarterly. Onc is Jay Wittenkeller with Rockwood Clinic; he sent my stuff to Mayo Clinic to confirm the dx. Test results are gradually improving and I'm trying to be more active. I don't take all the precautions that you all talk about...I guess my case is quite benign. The only infection I've had in the last few years is a sinus infection after a cold in early Jan this year. My main complaints are fatigue (always, always) and aching shoulders, hips, hands and large muscle groups. The aching had abated for a while with a big increase in vitD, 8000mg/day, but is back this week. A big trip for me these days is to Seattle, but I don't have to take any extraordinary precautions, for which I am grateful.

Hi Herman, GCSF or Nivestim, also called Neupogen is a Drug that stimulates the production of neutrophils In the bone marrow. Many oncology patients are given this drug at stages during their chemo as the chemo kills all cells, not just the rogue cancer cells. Jamie