I have monitored your support group for a while now and appreciate all the shared information that can be found here. It has been very helpful over the last couple of years. First time writing. My husband is 61 years of age, diagnosed with CLL officially Oct. 2014, but high white counts as far back as 2009 (and possible before). His white count is about 110K, has multiple swollen lymph nodes and I have noticed that he cannot eat as much as he could. (He was in real pain after Thanksgiving dinner!) As a retired Marine/Naval aviator, he has always been in great physical condition. Now, if he could just stay away from germs he would be somewhat okay. He is catching a virus about every 6 - 8 weeks, and it takes 2+ weeks to recover to a normal functioning level. We know that treatment is getting near. With a Trisomy 12 deletion we are thinking that FCR may be his best bet. But with all this said, the main reason to write today is this: I am very concerned about an upcoming trip that has been arranged taking him to Machu Picchu (birthday present). Can his body handle the altitude? Starting at just over 11,000 feet and down to 8,000, with only one day and a half arrival before the trek (total time in altitude = 5.5 days. The physical rating is moderate (2 out of 5 rating). They do provide an oxygen bottle. Any thoughts as to the risk? My head-strong (always a Marine) just doesn't face up to these potential risks like I do. I want avoid a life threatening decision before this goes too far.
Thank you for any direction that you can give.
Signed, A Worried Wife.
Written by
AGreenwoods
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I would certainly discuss it with your husbands CLL hemetologist and make certain there is no anemia and RBC and hemoglobin levels are good.
A number of CLLers have visted Machu Picchu over the years with no problems... be certain to have good travel and emergency medical insurance, as well.
Do you know his haemoglobin level? If that's within normal range, he should be OK, particularly if his fitness routine includes walking hills. I'd be more worried about him catching a virus/becoming while travelling, so he will need to take adequate precautions to avoid anyone with an obvious infection and be very careful about the food and water he consumes. Has he been able to arrange suitable medical/travel insurance?
Viruses and bugs could be an issue there. When I was at altitude skiing over Christmas I found my lymph nodes seem to have gone down a bit. I'm not sure why. I felt really good at altitude.
From another stubborn former Marine & college Crew rower here: As CLLcanada/Chris and Aussie Neil suggested: Checking for recent decreases in Red Blood component levels and increasing fatigue levels is probably the best pre trip indicator. Confirming Iron, Ferritin, D3 and B12 levels are adequate can also help.
Fatigue has many forms in CLL, and I found it manifests as a impenetrable wall that stops me. When my CLL progresses I no longer can get a second wind or power through fatigue. But when I'm nearing treatment I suddenly age by 20 years, and cannot call on my stamina reserves.
Dear AG, the year before my official diagnosis, I trekked up to 17,700 feet, no problem. For normal people, up to 3000 meters (9,800 feet) is no problem, but after 3000 meters (9,800 feet), ascend gradually. Do not spend the night at a gain of more than 500 meters / day. During the day, you can ascend higher, but then descend to sleep. On that trek, there was a volunteer doctor in a place checking peoples O2 levels and giving a lecture on understanding altitude sickness, how to prevent it, and what to do. I have already explained what they recommend for preventing it, but what to do if someone starts having symptoms, descend until symptoms stop.
Before making the trek, I was practicing on stairs with a weighted backpack.
I also bought travel insurance which included helicopter evacuation from high altitude. The company was called World Nomads, they sell policies online.
You should factor in your husband's physical shape and progression of CLL, everything I have written is the usual advice for anyone trekking at high altitude.
I live at altitude. My home is at over 8000ft. I never have noticed any difference when going lower or back home. I would check with the doctor, as the level of exercise is what would possibly make a difference.
I was on Machu Picchu with a large number of "cruise" passengers that had been flown to altitude for a three day visit. Many were unfit, many were fit. For those that were unfit, the climbing around the ruins was a challenge regardless of altitude. For the rest of us, fit or not, it seemed very random who suffered most from altitude sickness. Some folks appeared unaffected while others had to be given oxygen. The best one can do is prepare by strengthening the legs beforehand. ie. hit the gym and hope you are one of those that is least affected by altitude.
Wow! I am so thankful for each and every response. I fessed-up to hubby and shared your posts. He is appreciative of your words of support as well. For now, he is doing pretty well, considering. This trip means a lot for him and gleaning from you all will help it to be successful. Blessings to you all!
Hi again, just another idea for preparation, in addition to doing stairs. If you do live anywhere where you can do some weekend walks (or hikes) at higher altitude. This is not always possible, I know, if you live where there are no mountains. Before my trek I did a few day hikes up to 3000 m, because I lived in a place where I could. If you can't do this, don't worry, just do stairs!
From experience, nothing prepares you for a physical exertion better than the actual thing. In other words, to prepare for a mountain trek, walking or running on flat ground are good, but going up and down is better (don't forget the down). That's why I recommend stairs. Start slowly, just maybe 10 minutes 4 times / week. Then increase to 15 minutes, then 20, then 30, etc. I know it's boring, but if you visualize your trip while exercising and talk about it, it gives you a reason and a goal.
Use the same footwear which you will use there, this is important. If you will have packs, start the stairs without them, but after you get past 20 minutes, add the packs. First just with a liter of water. Then add a liter, and another, etc.
Good advice! Thankfully, my husband is in good physical condition. We live close to the Smoky Mountains and he gets in a 8 - 10 mile day hike a couple of times a year and works hard, manual labor, around the house (moving boulders, digging, lifting, etc.) on a regular basis. I do remind him to drink water as he fails to get adequate amounts normally. Happy trails!
I get altitude sickness and went to Machu Picchu not long before getting diagnosed with CLL... which means I probably had it when there. My PCP prescribed a daily pill to relieve altitude sickness (don't recall name sorry) and I had no issues. Also chewing on the cocoa leaves available in the lobby of many hotels helps.
Cusco is much higher in altitude than Machu Picchu... so I remember feeling the effect of the altitude more there. By the time I got to MP, which was 1,000 m lower than Cusco where I had acclimated for a few days... no problemo.
Thanks! I will look for the altitude sickness pills and recommend them to my husband for a request from his doctor. I also read that liquid chlorophyll drops help. His head is in the clouds quite frequently so I hope that he will be prepared!
Probably it was Diamox. I took it, but only when above 4000 m (13,000 feet), and only half doses. In most countries I think it requires prescription, but in many trekking places, you can buy it over the counter.
It's purpose is to help the body acclimatize faster, not really relieve altitude sickness.
At 11,000 feet it might not be needed though.
You said the trek begins at 11,000 feet, then descends. If you are being transported to 11,000 feet, it doesn't give the body time to acclimatize, but on the other hand, it is not above the altitude where controlled rate of ascent is recommended. So if you sleep at 11,000 on the first day, you might feel symptoms, you might not. You will definitely feel short of breath though, and you will try to walk at your usual pace, and you will feel winded and weak. This is not altitude sickness though.
If you read up on the symptoms of AMS, and it's 2 forms, HAPE and HACE, you might become worried. But the solution is simply to descend. I remember the lecture the volunteer doctor gave. He said, if you get a slight headache from altitude, you might want to descend, but it may be ok just to stay put and rest. Anything worse than that, you should descend, even if it's midnight and inconvenient. One of the more severe symptoms is disorientation, so some people can be disoriented and not realize they need to descend. Their companions must recognize this and force them to descend.
Yes it was Diamox (acetazolamide)... and yes it was prescribed to relieve altitude sickness symptoms. See this: webmd.com/drugs/2/drug-6753...
I get issues skiing sometimes... for whatever reason beginning around 9K or 10K feet. Headache, strong nausea, dizziness, shortness of breath and tiredness. Knowing that I tried acetazolamide by prescription on the Peru trip, beginning the pills a day or two before arriving in Cusco, and had no issues aside from getting periodically--but completely normally--winded from all the climbing!
Post Machu Picchu Report: I just wanted to report that my husband did just fine on his trek. (One more hurdle done!) His trip included hiking far (and high) into the backcountry, where he enjoyed interacting with the locals and the nature around them. He did experience some "travelers disease." but so did some others. Thanks again for your advice, support and encouragement!
If by V C infusions, you mean vitamin C IV infusions, there is no evidence that they work for CLL and even some concern that they might drive CLL. One of our members tried it for a year, to no benefit.
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He is appreciative of your words of support as well. For now, he is doing pretty well, considering. This trip means a lot for him and gleaning from you all will help it to be successful. Blessings to you all!
CLL highly correlated to other cancers? 
CLL with LIVER Infiltration
Do we all qualify in UK as High Risk and NHS letter?
