Guest guest Posted July 13, 2011 Report Share Posted July 13, 2011 Alan - they now make clothes that help block UV rays. I'd check an outdoor/camping type store or ask at your local cancer center. The ones I've seen are simple shirts and pants- would work well on the golf course or in your car with a hat of course. Be sure to cover your ears. Happy golfing! Pat Alan Goldstein wrote: /message/15538 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2011 Report Share Posted July 14, 2011 Hi Alan, As a result of your CLL and FCR treatment, you are immunosuppressed: low numbers and systemic ineffectiveness of B-cells, CD4+ & CD8+ T-cells, and cutaneous dendritic cells (another important immune cell in the lymphoid lineage), The anti-viral/anti-bacterial prophylaxis increases vulnerability to sun damage to your skin. Overall result is that your immune system is far less effective than a non-CLL person's in detecting and attacking cancers before they develop beyond the single-cell stage. For that reason, secondary cancers of many types are far more common in CLL patients than in the general population. CLL'ers, and especially those who have had treatment, develop skin cancers with 8 times or more the frequency in the general population. I have had 1 basal cell and 2 squamous cell lesions since finishing FCR in Dec, 2009. Many others who post here have had many more, including melanoma. You may hear from them as well. Also developed prostate cancer in 2010. So the box score is immune system 0, post-treatment cancer types 3. Your pharmacist is a highly trained and capable professional, but is not a dermatologist. Beyond that, most dermatologists, like community practice hemo/oncs, do not see much CLL and may well be unaware of CLL'ers' vulnerability to skin cancers. Nonetheless, a (your) dermatologist is the proper authority on this risk question. I found and provided info on the CLL - skin cancer link on the internet and provided it to my dermatologist. She has been very attentive since, including 6-month whole body scans, and biopsies for any suspicious lesions and Mohs surgery for the malignant ones. The information is widely available. One good starting source would be CLL Topics at http://clltopics.org/index.php . Enter " skin cancer " in the Search Box; several excellent articles will pop up. You might check CLL Canada, as well. So, that's the long answer. The short (my non-medically qualified) answer is: 1. Stay out of the sun as much as possible - you are already holding the short end of the stick. 2. Establish a medical relationship with a dermatologist soon. Regards, Tim Klug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2011 Report Share Posted July 17, 2011 Alan, I would recommend that you stay out of the sun or get some sun protective clothing. I spend 3 months in Norway every summer, where the days are long and people use every opportunity to enjoy the sunshine. Well, last summer I ended up with a very itchy rash all over my body, apparently due to a reaction between sunlight and the three antibiotics I am on due to a chronic lung infection. This year I am much more careful, sitting in the shade and using long sleeves and long pants. I never had this problem in Arizona, where I live, perhaps because it gets warmer there and the days are shorter. I also get screened twice a year for skin cancer, and have had a few such incidents. Bente Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2011 Report Share Posted July 17, 2011 Quite a few styles of upf clothing are available now online for a variety of activities for both men and women. I highly recommend it, as the breathability of the fabrics has improved since the early days, and it really works. I still miss being able to be outdoors wearing real summer clothing, but it's worth it to me to be able to rest easy without having to lather sunblock over such a wide area of skin. (Colder fall and winter weather typically allows more layers, which together can block rays.) Best to all, Karni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2011 Report Share Posted July 17, 2011 Some outdoors/sportsmen's stores and cancer centers with shops which carry items specific to the needs of patients carry them, also. You might try Patagonia, which is local for me, but does a lot of on-line business. Pat Karni wrote: /message/15573 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2011 Report Share Posted July 18, 2011 We enjoy outdoor activities and have found LL Bean (online) to have a good selection of tropical weight clothing with UV protection built into the fabric. My husband has long sleeve shirts that can be converted to short sleeves, as well as long pants that can be zipped off into shorts. He also has what I refer to as his " foreign legion " hat that has a flap that covers his ears and neck when there is no shade protection. Stella Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2011 Report Share Posted July 25, 2011 Tim's point about chemo vulnerability is I think very good advice to discuss with your hematologist; I'm sure he knows whereof he speaks. I developed basal cell carcinomas on two different occasions on my nose and both times, as I remember I was either in treatment or had recently finished. But for those in w & w or long remissions (now includes me), I do think the brain is the best sunscreen. According to recent conclusions by Mayo Clinic researchers, there's a strong likelihood that Vitamin D is a factor that effects the speed of CLL progression to treatment and more and more researchers believe that D may play a much more significant role with other cancers as well, though how and which ones is far from being established. Calcium needs no introduction either — and the best information I've read is that a combination of healthy eating (with calcium/D awareness), supplements and some sun exposure is the most effective combination for deriving the benefits of both D & Calcium. I believe that's true. So I try to get about 20 minutes of sun exposure as often as I can (I started out with 10). But! I rotate frequently and keep my nose covered, and I confine my exposure to 20 minutes. The more sunscreen and clothing and hats you wear, the less amount of D & Calcium absorption is taking place. That's a question of your own comfort level and judgement. It's been several years since I had chemo. I think waiting a while before sun exposure is good advice -- hopefully your oncologist may be able to guide you a bit as to how long a while to wait. I think balance is the key. And even though I have less use of my brain since chemo and age set in, what's left is " cherce, " (choice) as a Spencer character said. Frances Dx'd 1998 CLL/SLL Quote Link to comment Share on other sites More sharing options...
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