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Thread: The end of my playing days.

  1. #226
    Registered User Doug Brock's Avatar
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    Default Re: The end of my playing days.

    Quote Originally Posted by Ivan Kelsall View Post
    Hi Doug - The 'taste' thingy is total crap !!!. I'm going to embark on a diet of hot/spicy & Pickled types of food. The ONLY things that have tasted 'real' so far are pickled foods such as Pickled Mussels / Fish (tinned Tuna mixed with a gallon or so of vinegar/salt/pepper), & i'm going to try some VERY highly spiced roast Pork spare ribs today. They'll have to be at least Jalapeño heat,otherwise the way my taste buds are,i'll never taste them. Plenty of smoked Paprika & Garlic as well should swing it ?. Even my very strong morning cup of Coffee tastes bland. I suppose that mainly - it's about making sure that i do eat something. At the moment, apart from feeling hungry & wanting to eat,i could do without the hassle of crap tasting food. Stick to the Jack Daniels my inner self tells me (LOL !). Realistically,i very rarely drink spirits of any sort,although i do like JD !. They hit my stomach like a Mac truck on steroids !!!. I had a drink of Cognac mixed with Ginger Ale a couple of nights ago,hoping for some 'taste' & i might as well have been drinking water.
    I, too, veered toward the hot/spicy foods as my taste buds disappeared, but sadly by the later rounds even that wasn't enough. I couldn't taste salt or hot stuff, either one. It became a matter of preferring to force a bit of food down my throat each day than to be hospitalized. The only good thing was that my appetite was gone as well, so at least I wasn't fighting hunger.

    I don't drink at all, so I was intrigued by your experience with Cognac and Chemo-reduced taste buds. Sorry that didn't work either!
    Doug Brock
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  2. #227
    Registered Muser dang's Avatar
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    Default Re: The end of my playing days.

    Thanks for the updates Ivan, sounds like you’re got struggles but also someone to fight for, keep it up!

    Meal replacement drinks can be expensive but worth a try if it get’s worse... at least you won’t taste them! Lol
    I should be pickin' rather than postin'

  3. #228
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    Default Re: The end of my playing days.

    Quote Originally Posted by flatpicknut View Post
    I, too, veered toward the hot/spicy foods as my taste buds disappeared, but sadly by the later rounds even that wasn't enough. I couldn't taste salt or hot stuff, either one. It became a matter of preferring to force a bit of food down my throat each day than to be hospitalized. The only good thing was that my appetite was gone as well, so at least I wasn't fighting hunger.

    I don't drink at all, so I was intrigued by your experience with Cognac and Chemo-reduced taste buds. Sorry that didn't work either!
    What kind of chemo meds (names?)were you getting Doug (if you don't mind sharing)? I wonder if they are similar to what Ivan is getting now?
    Bernie
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    Due to current budgetary restrictions the light at the end of the tunnel has been turned off -- sorry about the inconvenience.

  4. #229
    Registered User Doug Brock's Avatar
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    Default Re: The end of my playing days.

    Quote Originally Posted by Bernie Daniel View Post
    What kind of chemo meds (names?)were you getting Doug (if you don't mind sharing)? I wonder if they are similar to what Ivan is getting now?
    I had a cocktail including 5-FU (pretty routine for colon cancer). I doubt that is what Ivan is on, but the side effects he's experiencing regarding losing taste were all too familiar. The main side effects for my Chemo was nausea, weakness, wobbly legs, hair thinning (but not total loss), sensitivity to cold (couldn't drink or eat stuff cooler than room temperature), reduction in sense of taste, and peripheral neuropathy. The peripheral neuropathy hasn't decreased since I completed Chemo - my fingertips and toes are numb all the time. Not enough to keep me from playing music, thank goodness (I hadn't played music much in the last few years, but during Chemo I decided to get music back into my life, whether or not I survived the cancer) but I'm still hoping that the numbness will go away within a year or so. Docs say it could be permanent though.

    I gather that Ivan is on stronger stuff. It took me a couple of months of Chemo before I really started having major problems with taste.
    Doug Brock
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  5. #230

    Default Re: The end of my playing days.

    I'm like many others on this thread Ivan in that I always enjoyed seeing your name commenting on a thread/topic. Thanks for the many hours of reading your comments, input on all things mandolin related. I wish you a very quick recovery!

    Warm Regards,
    Dennis B.

  6. #231
    Certified! Bernie Daniel's Avatar
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    Default Re: The end of my playing days.

    Quote Originally Posted by flatpicknut View Post
    I had a cocktail including 5-FU (pretty routine for colon cancer). I doubt that is what Ivan is on, but the side effects he's experiencing regarding losing taste were all too familiar. The main side effects for my Chemo was nausea, weakness, wobbly legs, hair thinning (but not total loss), sensitivity to cold (couldn't drink or eat stuff cooler than room temperature), reduction in sense of taste, and peripheral neuropathy. The peripheral neuropathy hasn't decreased since I completed Chemo - my fingertips and toes are numb all the time. Not enough to keep me from playing music, thank goodness (I hadn't played music much in the last few years, but during Chemo I decided to get music back into my life, whether or not I survived the cancer) but I'm still hoping that the numbness will go away within a year or so. Docs say it could be permanent though.

    I gather that Ivan is on stronger stuff. It took me a couple of months of Chemo before I really started having major problems with taste.

    Thank you Doug and maybe Ivan will find this interesting as well. In 1974 I was a newly minted Ph.D. (biochemistry) at Ohio State and debating whether to take a real job at a biochemical supplies company in Ohio or a research post-doc at OSU while I waited for my wife to finish her MBA. I opted for the post-doc which was a cancer research project with a Dr. Don Witiak the chairman of the Biochemical Pharmacology Department who in turn had been a post-doctoral student of Dr. Charles Heidelberger at the University of Wisconsin. Who was Dr. Heidelberger? He was the man who, in the late 60s early 70s had first synthesized 5-Flouro-Uracil and had proposed his new compound could be a drug to kill cancer cells by preventing them from dividing. He received a patent and many awards for this first chemotherapy drug.

    It truly saddens me to realize this beast of a nasty compound with all its systemic toxicity is still in such wide use today. Many of my friends and my mother were treated with 5FU and each time another case comes to my attention I wonder why it is still being used (I'm not saying there is not a perfectly good reason but you'd think we would have moved past it?).

    A few years into the project, through Don, I met and got to know Charlie and he became a good friend and a scientific father figure to me. Charlie passed on in the early 1980s (lung cancer -- from smoking?) and at the time he was amazed at how widespread the use of 5-FU had become. If he were alive today he would be equally surprised and probably shocked I think to realize it is still in such common use.

    Back in the mid-70s we were trying to design targeted chemotherapeutic drugs. That is drugs that would go to directly to the tumor and not poison the rest of the body like the GI tract and hair follicles etc and make the patient so sick with all the other things you and Ivan describe. Of course we thought back then (70s) that our science was so very sophisticated and that we could certainly solve this problem. In truth compared to molecular biology of today we were like Stone Age flint cutters.

    There are many drugs today that do target tumors and produce less systemic toxicity but I am truly surprised that much more progress in this area has not been made and that the whole body has to be hammered like that.
    Bernie
    ____
    Due to current budgetary restrictions the light at the end of the tunnel has been turned off -- sorry about the inconvenience.

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  8. #232
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    Default Re: The end of my playing days.

    Ivan, I am a tee shirt kind of guy and this morning when I dug this one out of the drawer, I thought of you. This shirt was one of my first 'celebration' purchases after completion of my chemo. It has avoided the rag bag for a lot longer than most of my tee shirts.

    Click image for larger version. 

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    If it is too faded to read, it says "LIFE IS GOOD", "GO LONG". That shirt is nearly 5 years old now and I am still smiling.

    ps: I shot my one and only even par 18 hole round about two years later. Also grew my pot belly.
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  10. #233
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    Default Re: The end of my playing days.

    Best of luck with your battle.
    As we age, one can’t predict what’s around the corner, the realization for me is I doubt I have longevity on my side,
    both parents died early from one form of Cancer or another. Last year I decided to sell off all my musical instruments
    except one cheapo beater Mandolin.

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    Default Re: The end of my playing days.

    Ivan, I had one young gentleman I took care of who ate Taco Bell (don't know if they are in the UK) for breakfast, lunch, and supper because that was all that tasted good to him during his treatment. Also true about room-temperature foods - we routinely left all foods to get to room temp if people asked for it. You have to do what works for you. But hot foods are relatively popular (at least on this side of the pond right now,) so enjoy! And yes, it's just you need to eat something!

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  13. #235
    Phil Goodson Philphool's Avatar
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    Default Re: The end of my playing days.

    Lots of chedder cheese balls & wheat crackers kept me from starving during chemo some years ago.
    Whatever works and has calories.
    Lots of Linda Rondstadt CDs helped too!
    Phil

    “Sharps/Flats” ≠ “Accidentals”

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    Default Re: The end of my playing days.

    There truly is a light at the end of the tunnel. With your tenacity and will power and technology you'll do fine.

    While I did not endure Chemo therapy I enjoyed 34 radiation treatments over 7-8 weeks back in 2010-2011.. for throat cancer.
    Didn't smoke, drink, do drugs, excellent diet and very healthy and fit otherwise.. just my turn.
    I managed the entire 6 month treatment (also 3 surgeries) without a feeding tube, first person to do so in the 18 years of this particular facility.

    I was awarded the poster child award for having survived with limited affect.

    Taste buds.. everything tasted the same,, metallic and awful for about 2 years. My desire to eat was minimal.
    Saliva reduced by 80 percent. This has stabilized to about 60% loss. I have a great appetite and very energetic and my voice has returned though about an octave lower for the first 1/4 of the day. My taste is back 100%

    To maintain caloric count..
    Campbells Chicken Noodle soup made with whole cream. Tapioca pudding in the little 8 packs. Carton a day.

    Hang in there and best of luck.

    Jeff

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  16. #237
    Registered User Ivan Kelsall's Avatar
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    Default Re: The end of my playing days.

    Hi Folks - Especially Bernie D. I'm sorry that i haven't been in touch with you & the guys for a while. I spend very little time on my PC at the moment. I field my e-mails - end of - as long as there aren't too many.

    Jeff - You got it !!. Lack of taste tends to make you dispair of being able to find anything at all worth eating. I know that i have another 3 Chemo. sessions coming up,so i'm not expecting my sense of taste to return any time soon.

    From Phil - It seems that anything that has flour in it,for me,at the moment has the texture of child's modelling clay - repulsive. I did have a sandwich yesterday slathered with hot Lime pickle & that sank ok. I've found that tinned or fresh fruit tastes ok as well - it's tart & acidic to begin with,so the bitter aftertaste that i get doesn't seem too much out of place. My wife had bought some spicy Chicken Pakoras (see pic.) yesterday & they tasted really nice - so yes,hot / spicy / pickly foods might be the way to go for flavour at this time.

    From Lady Solo - " You have to do what works for you." Yes - but on a daily basis !!. Each day seems to be different.

    I really don't know what 'chemicals' i'm being given - i suppose that i could have asked !. Unfortunately,it's still a fact that with Chemo.,they have to 'poison' the whole body to get at the bad cells - the Chemo. can't really differentiate between good & bad.
    I've no doubt that at some point in the future,Chemo. might become much more 'targetable' ( i hope),& that other methods for combatting cancers as a whole will be developed.

    OK - I'm done,
    Warmest regards to all - IvanClick image for larger version. 

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  18. #238
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    Default Re: The end of my playing days.

    You are showing such courage in your terrible troubles, Ivan. You are an inspiration in your ability to keep this thread going.
    I'm playing all the right notes, but not necessarily in the right order. - Eric Morecambe

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  20. #239
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    Default Re: The end of my playing days.

    Hi John - As i mentioned in another post - this is a 'cathartic' effort on my part = ''if you talk about it'' you're not sitting dwelling on it so much. Each day is different. Some days i can feel 90% ok - other days NOT !!. It's a constant source of frustration & anger at times. I've been very,very lucky in years past to have had almost no major illnesses at all (Flu etc.),apart from the horrific Flu that i had last March,so this major illness,coming out of the blue the way it did,simply knocked me sideways.

    Me & my wife watched a DVD filmed by a good friend of mine of the 1989 Iron Bridge Bluegrass Festival yesterday afternoon. It was the first time that i've watched / listened to any music of any genre. In the film,i play several instrumentals on my then 2 year old Stelling banjo,& watching some of the mandolin players,i was almost regretful of parting with my 3 mandolins. Having said that - i asked myself,if i still had even one of them,would i play it ?. Probably not.

    I keep as active as i can within limits = if i start to ache / become breathless - i quit !. Reading, as i've always done throughout my whole life,is still the finest therapy - as long as my back is supported by a nice soft pillow to keep any pressure off my right lung.

    Book being read right now :- ''The Bodies Left Behind'' Jeffrey Deaver crime thiller. ''Parallel Worlds'' Michio Kaku - purely for the concepts !!
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    Regards - Ivan
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  22. #240
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    Default Re: The end of my playing days.

    Quote Originally Posted by Ivan Kelsall View Post
    Hi Folks - Especially Bernie D. I'm sorry that i haven't been in touch with you & the guys for a while. I spend very little time on my PC at the moment. I field my e-mails - end of - as long as there aren't too many.......I really don't know what 'chemicals' i'm being given - i suppose that i could have asked !. Unfortunately,it's still a fact that with Chemo.,they have to 'poison' the whole body to get at the bad cells - the Chemo. can't really differentiate between good & bad.
    I've no doubt that at some point in the future,Chemo. might become much more 'targetable' ( i hope),& that other methods for combatting cancers as a whole will be developed. OK - I'm done,
    Warmest regards to all - IvanClick image for larger version. 

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    Send emails when you are up to it and don't worry about anything else. What makes me sad about the lack of apparent lack of progress in tumor-targeted chemotherapy is we were trying to do this in the early 1970s when our understanding was so crude compared today's knowledge -- it just blows my mind that so much more has not been accomplished in this regard with the incredibly powerful tools of molecular biology that we have today.
    Bernie
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    Due to current budgetary restrictions the light at the end of the tunnel has been turned off -- sorry about the inconvenience.

  23. #241
    Registered User lflngpicker's Avatar
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    Default Re: The end of my playing days.

    Ivan, I am so sorry to hear about your cancer. I know it is hard in so many ways, and letting go of your instruments is one of many losses. You have my sincere empathy and concern. You have been a joy to exchange with over the years. I hope that you prevail, friend! Best, Dan

  24. #242
    Registered User Ivan Kelsall's Avatar
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    Default Re: The end of my playing days.

    From Bernie - " ..it just blows my mind that so much more has not been accomplished in this regard with the incredibly powerful tools of molecular biology that we have today. "

    Bernie - For me,that simply indicates just how hellishly difficult cancer is to combat. I'm sure that some of the very finest minds in all of medicine have focussed their thoughts on how to combat cancer for decades- but ???. To paraphrase an old saying re.Chemo : - '' It may not be the best in town,but it'll be the 'best' 'til the best comes around '' !.

    As primitive as i may still be,it's earned millions of folk a reprieve & given them years of maybe unexpected life. At the moment,it can't get better than that.

    Dan - Many thanks indeed.

    I watched an episode of the UK ''Antiques Roadshow'' last night with my wife. A guy on there who worked a a rubbish dump somewhere in London turned up with a box of letter sent by a servant who used to work for Sir Winston Churchill,to her son. She wrote on a daily basis & the guy had over 1,100 letters all about what WC was doing on a daily basis. He also had a boxed cigar of the type that WC used to smoke & one of his top hats - all genuine !!.

    The expert placed his value on them, then mentioned one of Sir Winstons famous sayings - ''If you're going through Hell - keep going !'' I suppose that's what all cancer patients have to do ?,

    Ivan
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  26. #243
    Registered User Ivan Kelsall's Avatar
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    Default Re: The end of my playing days.

    Hi - For all you very patient & incredibly supportive folk,here's a 'progress up-date' (sort of ).

    My review x-ray yesterday, showed no further increase of my ''infection'' (should we call it) since the begining of Feb. ,& my blood tests showed that i still had some in my alcohol stream != earlydays yet - but !. I have my second dose of Chemo. next Wed. April 3rd,& my doc.seemed fairly hopefull that we can maybe at least stabilise the 'infection' - that's for the future to reveal.

    I'm still battling on the ''food front'' - trying to find palatable foods. I think that i've settled on non-greasy / fat free foods / pickled 'things' & hot,spicy foods = Chicken Madras for dinner tonight !. Fruit is also excellent. I had some pineapple yesterday - possibly the most delicious food i've eaten in 2 1/2 weeks - i could have eaten it for ever ( not really but you'll get my meaning) - it was so cool,sweet & full of flavour,i could have fooled myself into thinking that my taste buds had returned to max input !,
    Best wishes - Ivan
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  28. #244

    Default Re: The end of my playing days.

    Thanks for the update Ivan - great to hear that’s no further increase since early Feb.

    Good luck with the next session.

    All the best

    John

  29. #245
    Registered User Ivan Kelsall's Avatar
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    Default Re: The end of my playing days.

    Hi Johnny - Many thanks indeed.

    The ''Chicken Madras'' curry last night,coupled with Garlic bread so strong the wallpaper almost peeled off,was delicious. Really - one of the only meals that i've been able to eat without any bad taste in my mouth. We take such simple things as our sense of taste for granted - but when they disappear,it's 'not nice' !!. As long as my sense of tast doesn't get any worse,i'm learning to cope to an extent,
    Ivan
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  31. #246
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    Default Re: The end of my playing days.

    Quote Originally Posted by Ivan Kelsall View Post
    Hi - For all you very patient & incredibly supportive folk,here's a 'progress up-date' (sort of ).

    My review x-ray yesterday, showed no further increase of my ''infection'' (should we call it) since the begining of Feb. ,& my blood tests showed that i still had some in my alcohol stream != earlydays yet - but !. I have my second dose of Chemo. next Wed. April 3rd,& my doc.seemed fairly hopefull that we can maybe at least stabilise the 'infection' - that's for the future to reveal.

    I'm still battling on the ''food front'' - trying to find palatable foods. I think that i've settled on non-greasy / fat free foods / pickled 'things' & hot,spicy foods = Chicken Madras for dinner tonight !. Fruit is also excellent. I had some pineapple yesterday - possibly the most delicious food i've eaten in 2 1/2 weeks - i could have eaten it for ever ( not really but you'll get my meaning) - it was so cool,sweet & full of flavour,i could have fooled myself into thinking that my taste buds had returned to max input !,
    Best wishes - Ivan
    That's good news Ivan. All the best, mate.
    David A. Gordon

  32. #247
    Registered Muser dang's Avatar
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    Default Re: The end of my playing days.

    Quote Originally Posted by Ivan Kelsall View Post
    Hi Johnny - Many thanks indeed.

    The ''Chicken Madras'' curry last night,coupled with Garlic bread so strong the wallpaper almost peeled off,was delicious. Really - one of the only meals that i've been able to eat without any bad taste in my mouth. We take such simple things as our sense of taste for granted - but when they disappear,it's 'not nice' !!. As long as my sense of tast doesn't get any worse,i'm learning to cope to an extent,
    Ivan
    Chicken curry sounds really good, apparently I am suggestible!

    Glad you’re coping, I savored my orange a long time after your previous post. I work overnights at a hospital so your posts have really been hitting home and remind me why I am here.
    I should be pickin' rather than postin'

  33. #248
    Registered User Ivan Kelsall's Avatar
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    Default Re: The end of my playing days.

    Hi Gordon / Dang - Many thanks. I'm just hoping that my sense of taste doesn't lessen even more after my next dose of Chemo.

    It's even more chicken curry tonight !!. I can taste it - so who cares ?. Soon to be followed by more Pineapple. My wife bought me some ''Crushed Lime & Peppermint'' Cordial yesterday - i could only manage to drink 3 pints of it !!. It was so 'moreish',but you have to make sure that you don't overdo the 'fruity' things unless you plan to stake out your bathroom for a few days (LOL !!),
    Ivan
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  35. #249

    Default Re: The end of my playing days.

    Ivan, have you tried any homeopathic remedies? Like Nux Vomica? Perhaps a visit to a local homeopathic practitioner would help with the side effects. Also, perhaps some acupuncture. In many of the cancer treatment centers here in the US there is an acupuncturist and in some cases a whole group of alternative medicine practitioners. I have a friend who does reiki and acupuncture in the local one. Some patients find it very beneficial, especially for the nausea.
    Good Advice: Play before you pay, and know your product and your market.

  36. #250
    Americana in France? Daniel Nestlerode's Avatar
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    Default Re: The end of my playing days.

    As Dagger says, that is good news. And I'm glad you're finding food worth eating!

    Daniel

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