18 month NED
Boy, it seems like this last 3 months went by rather quickly! But they came and went, all is good and now I'm closing in on that 2 year milestone. I feel pretty darn good and I feel blessed that things are going as well as they are. One of the nurse practitioners that I saw at my last visit said that most patients seem to level out in regards to on going symptoms (like dry mouth) around the 18 month mark. If that's the case I can live with it. Another NP said that many patients have restored saliva around 5 years post tx. I could lieve with that as well, but I don't count on anything... just take it as it is.
One thing I've noticed is that my tolerance for cold has dropped a bit. I'm not sure if that's from the chemo or if it has more to do with my age... maybe a combination of both. Regardless, I'm not too fond of the cold winter months any longer and have been kicking around the idea of moving down to the South Carolina low country where a couple relatives live, once I pass that 2-year checkup. It wasn't that long ago when I would cringe at the thought of living somewere where it is usually humid, but that's a whole different story now. My dry mouth (and dry skin) is much less noticeable when the humidity goes up. It took me an extra 40 minutes to drive up to the hospital yesterday because there were heavy morning snow squalls that brought highway traffic to a crawl. I could do without that as well.
My life is good as it is, and deciding to move would be not only a major life decision, but quite the undertaking. But I'm in a position where I can do it and I feel like I've been given a second chance on life and should not squander that chance. Stay tuned. 
Comments
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Steadily Improving
EromanO I am happy for you getting close to that 2 year mark. You are certainly Blessed and I am glad you feel really good. I too minded the cold and heat more for awhile but it diminished after while. Now I just don’t like the cold because I am older and for sure your age plays into a lot of these things. There are a number of older folks on here and we tend to blame treatments on a lot of things but aging is a factor also. EromanO if the south and warm weather is pulling you put some thought into it, plan it out with the pluses and minuses, and go for it. You will have relatives that know the ins and outs of the area. No matter where you’re at you can still hook up with your CSN H & N friends-Take Care-God Bless
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Congrats on the 18 month mark
Congrats on the 18 month mark. I'm now 16 months out and I too can't believe how fast the time has went since I finished my treatment. Here's to a wonderful and fullfilling 2020.
Rick
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Congratulations!!
It's always heartening, to hear great news!!
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It could be nureopathy from
It could be nureopathy from the chemo. Chemo damages the tiny nerve endings in your hands and feet, so your brain doesn't get the signals to send warm blood to those areas. Some of those nerve endings regenerate, some won't. After my chemo in the spring of 2009 I had to wear gloves in air conditioned cars and at home for several months. Most of that gradually went away, but I still need gloves when the outside temps are below 50 degrees.
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I know exactly what you meanMikemetz said:It could be nureopathy from
It could be nureopathy from the chemo. Chemo damages the tiny nerve endings in your hands and feet, so your brain doesn't get the signals to send warm blood to those areas. Some of those nerve endings regenerate, some won't. After my chemo in the spring of 2009 I had to wear gloves in air conditioned cars and at home for several months. Most of that gradually went away, but I still need gloves when the outside temps are below 50 degrees.
My hands are freezing as soon as the temps come down a little. When I'm watching TV at night - especially this time of year - I have to cover them up to keep them warm. Conversely, the bottoms of my feel feel like they're on fire all the time. But generally speaking, I don't notice any of it much when I stay busy.
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OKCnative suggested
saunas - and I feel those and the hot tub (including workouts) at the gym have helped with the cold arms! I know you work out. Have you tried sauna and/or hot tub?
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I workout 2 or 3 times a weekmotorcycleguy said:OKCnative suggested
saunas - and I feel those and the hot tub (including workouts) at the gym have helped with the cold arms! I know you work out. Have you tried sauna and/or hot tub?
I workout 2 or 3 times a week, involving lots of cardio, and enjoy hiking and cycling. Anytime I raise my heart rate I don't notice the cold hands. But once my activity drops I sure do. Haven't been in a sauna in a long time, but enjoyed a hot tub last summer while staying at a cabin and hiking in a state park. I might be able to put a 2-person hot tub on my deck, which would be nice to use during the winter, but not sure I want to deal with the maintenance.
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ERomanO said:
I workout 2 or 3 times a week
I workout 2 or 3 times a week, involving lots of cardio, and enjoy hiking and cycling. Anytime I raise my heart rate I don't notice the cold hands. But once my activity drops I sure do. Haven't been in a sauna in a long time, but enjoyed a hot tub last summer while staying at a cabin and hiking in a state park. I might be able to put a 2-person hot tub on my deck, which would be nice to use during the winter, but not sure I want to deal with the maintenance.
Thanks for sharing that info ERomano, 1% is pretty sweet I will glady take that.
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Thanks!
It's just one more step - and a good one - but I take nothing for granted. I know things can take turn for the worse at any time. But as I said, I feel pretty good so I'll just run with that for now.
big G, I asked one of the NPs about how many recurrances they get and she said about 1%. A lot of specifics were left out of that conversation, but I'd say the odds were pretty good to begin with.
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I spoke a little too soon
When I was at my checkup the RO Nurse Practitioner did the scope instead of my ENT. She said there was some "gunk" at the base of my tongue that looked like coffee creamer. She couldn't compare it to the scope from my last visit because the system was down, but was going still say NED on the report and have the docs take a look when the system comes back up. Well she contacted me later that day and said that it looked like thrush, prescribed antifungal medication and said that she would instruct scheduling to set up another visit in a month. I told her that I failed to mention at my checkup that I had a bad sinus infection on and off for almost 2 months prior to my visit and at the very tail end developed a sore throat and some visible white "gunk". Of course that happened on a Friday and by Monday the soreness was gone and the gunk no longer visible, so I didn't go see my PCP. She said not to worry and that the infection was likely what lead to the thrush, but they still wanted to see me again.
This is no indication that trouble is brewing, but I guess once they prescribe medication for something that's taking place around the initial cancer site they all want to see me again as a precaution. I suppose I'll just say that that's good care.
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Yup... meds are being taken
Yup... meds are being taken as prescribed. I don't see how a virus can lead to thrush, but I never knew a virus could become cancerous either. The H&NC world is full of surprises. I think the NP just wanted to me to not worry and and relax until I go for the follow-up to my follow-up. I'm sure I'll get plenty of explanations when I'm there.
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Congratulations at 18
That's a big milestone! Many are, but 18 months is a biggie among biggies!
I want to move to south Florida or something. I used to tease my wife about her cold hands. ...that'll learm me. My hands are so cold that I can't stand to touch them, and I don't have much choice.
I will soak in a really hot bathtubfull of water. It goes away pretty quickly. A hot tub would be nice, but a bathtub will do in a pinch.
Be well!!!
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Thyroid probably a culprit in your, "Cold" sensitivitytbret said:Congratulations at 18
That's a big milestone! Many are, but 18 months is a biggie among biggies!
I want to move to south Florida or something. I used to tease my wife about her cold hands. ...that'll learm me. My hands are so cold that I can't stand to touch them, and I don't have much choice.
I will soak in a really hot bathtubfull of water. It goes away pretty quickly. A hot tub would be nice, but a bathtub will do in a pinch.
Be well!!!
I also suffer from sensitivity to cold and I'm ten years out. I'm also on thyroid medication which took almost three years to get adjusted correctly but it does help dealing with the cold. The thyroid regulates the body temperature so be vigilant about your thyroid levels and keep advocating for medication adjustment until you see improvement. I live in Chicago so it can get uncomfortable. Congrats on your milestone and hang in there!
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Thanks everyone!
Just had my yearly physical with my PCP today and everything there is good too, although my PSA jumped up to the borderline limit. Since the physical exam checked out okay my doctor isn't concerned and ordered another PSA test in 4 months. BP & cholesterol are super good, thyroid has been checked a lot lately and is still functioning, although it's hanging aroung that borderline, too. My oncologists fully expect my thyroid to poop out prematurely, but who knows how long that will take. I guess I'll have to suffer the cold hands in the meantime.
I seems that since I was treated for thrush I get to go visit my oncologists for an interim checkup at the end of Feb.
I don't want to speak too soon and jinx myself, but I have finally started to sleep well again - 7 1/2 to 9 hours the last few nights. If it lasts a week I'll consider it a trend.
Carry on, my friends. You're the best!
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Always hopeERomanO said:Thanks everyone!
Just had my yearly physical with my PCP today and everything there is good too, although my PSA jumped up to the borderline limit. Since the physical exam checked out okay my doctor isn't concerned and ordered another PSA test in 4 months. BP & cholesterol are super good, thyroid has been checked a lot lately and is still functioning, although it's hanging aroung that borderline, too. My oncologists fully expect my thyroid to poop out prematurely, but who knows how long that will take. I guess I'll have to suffer the cold hands in the meantime.
I seems that since I was treated for thrush I get to go visit my oncologists for an interim checkup at the end of Feb.
I don't want to speak too soon and jinx myself, but I have finally started to sleep well again - 7 1/2 to 9 hours the last few nights. If it lasts a week I'll consider it a trend.
Carry on, my friends. You're the best!
My saliva, smell, taste, recovered 100%, and thyroid still intact after doing the whole routine. Always be thankful, great outcomes shows all things are possible. Often times I attribute dodging major damange to fairly detailed and technical discussions with the RO. I was pretty clear in asking them to be careful around the salivary and thyroid glands. Anyway, you sound good so carry on!
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