Diagnosis Complete (95%) - Chemo/Rad Starting Next Week - Yikes!
Comments
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Jaime,
I see your chem/rads have been pushed back a couple months.
For a guy in the Phoenix area, this should mean a LOT of time on that Harley! (We're in the mid 50's this weekend, and I'll be on the Fat Bob..)
It should ALSO mean to EAT EAT EAT - ALL of your favorites and LOTS of them!
You got a reprieve on the upcoming taste/swallowing challenges - so take advantage of that....
Ride safe!
Curt
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"Sad Eyes" by Don Rymer
Don was a very successful TV and movie writer, who passed away from HNC in 2012, shortly after this was published. It shows how he wanted people to react to the news that he was not going to survive his cancer.
https://copingmag.com/don-rhymer/
mike
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That was a good one.
That was a good one.
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Hi, I'm new the the group as of today. I was diagnosed with throat cancer the day before Christmas eve. Have decided not to have a feeding tube put in. Hopefully it's not a mistake. Start treatment Feb. 2nd. Thanks to all of you this site has answered a few questions & given me some help about this cancer. I don't have a lot of support at home, fortunately i do have a few friends locally that have offered to help. I have 8 dogs to care for so I need to handle this. Trying to keep a positive attitude. I'm little, 92 lbs. but fierce like Crystal above so gonna fight like hell to beat this. My dogs need me. This 65 year old is a fighter. Thanks to all of you for the information and sharing your experience on this site. Since most of your cancer's were last year I hope ya'll are cancer free & doing fabulous. Wish me luck.
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Hi Jaime,
I was diagnosed this time last year and completed 35 sessions of daily radiation and 7 infusions of chemo. Here are a couple of notes on my experiences, obviously your experience may be very different.
I’m 65 now and used to be quite athletic and other than the cancer had been very healthy and fairly fit.
I chose to tell people who are close to me; extended family, close friends and business associates that needed to know that they needed to pick up some slack while I was dealing with this. In my experience I’m glad I did as it allowed people to be more open with their expressions of love and gave them permission to help. My extended family members especially have all become so much closer in this experience. It’s been very life affirming. Sure, some people have disappointed but I choose to offer them Grace, we all have our own life’s challenges to deal with so I don’t judge. It also helped my wife to be able to talk to people, and she took on all of the family communications so I didn’t have to. She’s an angel! She now has special and enhanced relationships with my cousins and brothers.
I put off getting the feeding tube but when I got it I was glad I did. Don’t wait too long, life does become much easier when every meal isn’t a dreaded experience. Use the baking soda rinse often! Don’t wait until you need a pill to take one, get ahead of the side effects.
While the process was extremely difficult 1 year later I can say that I’m 90% recovered from the radiation and chemo and had my cancer not metastasized my life would be back to the way it before the diagnosis. As it is, outside of my treatments every 3rd week, the only thing holding me back is Covid restrictions! I feel great!!! And I needed to lose a few pounds anyway!!
Stay positive, and some gallows humor never hurts…..
Mark
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jmer I wish you the best and welcome you to CSN H&N group. I too had throat cancer. You may find this treatment is difficult and some even call it brutal and it can be. As far as the feeding tube my cancer team would not start treatment till I had one installed. In my opinion, it is better to get one ahead of time as it is not just a quick little office thing you would probably do an outpatient thing at the hospital and are put to sleep during the procedure. I was glad I had one and when not needed they are easily pulled out and removed not requiring anything more than a skilled had with the proper twist and pull and it's out. One reason you may want one is when loaded down with appointments of radiation and chemo and you get halfway through treatment and feel pretty beat up and lousy with an inflamed sore throat from the radiation you may not feel like having a procedure on top of it. I see you are feisty and fierce and ready to fight like hell but when the reality and effects of treatment weigh in on you it can have a very humbling effect. This treatment can bring big strong men to their knees believe me so prepare yourself as well as you can. At your weight of 92 pounds, you don't have much of a cushion against weight loss putting your health in jeopardy. so my opinion would be if your team wants you to get a feeding tube take their recommendation and get it. Here is a video of the feeding tube installation
Also, drink plenty of water during your treatment period and as far as pain your team should supply pain meds as needed and when or if you need pain meds take them to stay ahead of the pain don't wait till you have severe pain. So if you have constant pain to manage for a while take them on a schedule. If they haven't already your team should set you up with a speech therapist to handle any swallowing or other oral problems you may encounter. This treatment is doable and you will get through this but prepare yourself it is not easy. I call this the toughest thing I ever went through in my life up to that point. We can help you on here as you progress through this so keep us updated.
Wishing you the best-Take care-God Bless-Russ
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Jeri I don't remember any soreness after having the J-tube installed although I am pretty sure it would be some for a little bit as it is an incision so to speak in your tissue but nothing bad enough that I remember. I had radiation for 7 weeks a total of 35 treatments mixed with chemo treatments. This seems to be the standard for a lot of H&N cancers although I have seen cases on here where they only got 30 rads instead. If you get it, it will seem odd going home and having this tube hanging out of your body but you get used to it. If there is any initial soreness it will go away quickly and you should not have any more pain or soreness while you have it. The cheapest easiest method to hold it up and keep it snug against your belly is using the band cut-off a pair of men's underwear or any elastic you can come up with. There are J-tube holders sold on the net but they are from $20 and up. You can do everything you always do this doesn't get in the way, showering etc. it doesn't have to be covered, in fact during a shower it just gets cleaned. I agree nobody wants one, I know I didn't but I also knew I had some serious cancer and I would need everything I could do to go through this and get rid of this in a once-and-done shot. I know you are apprehensive but so was I and anyone who has to go through this. Up to this point in my life, I was not exposed to a lot of medical stuff other than shots. Now suddenly I am getting the full dose of a major cancer event with a feeding tube and then a port installed in my chest for chemo and infusions. But I eventually needed the tube for months as I could not swallow anything so all nourishment, meds, water were through there. Then suddenly you feel different about the J-tube, no longer the annoyance now it is your friend. And when you are all done and are sustaining yourself by eating again it is removed with an easy maneuver in the office they just pop it right out. Don't forget all this is temporary to get you over this rough hump in your life not permanent. Just like a crutch or a cane or an arm sling are medical devices to help you through something so is a j-tube.
Wishing You The Best-Take Care-God Bless-Russ
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I’m not Russ so i hope you. Don’t mind me adding on to his great advice.
They put me to sleep for the insertion, didn’t feel a thing, and the soreness was minimal. I didn’t get it until probably the the third week but, as I mentioned I’m really glad I did. I needed to intake about 2500 calories a day or I would continue to lose weight. Eating became difficult so I was drinking 7 boosts a day. You can imagine that got really old. It was very stressful on both me and my wife….every meal was a nightmare. Keeping weight on and staying hydrated is a prime objective.
After I had the tube inserted the whole issue was taken off the table, I just poured the boosts and water into the tube! Piece of cake. My weight stabilized and we never discussed meals again.
you have to keep it clean, which is easy. I would pretty much forget I had it, although I no longer ever slept on my stomach, always my side. As Russ said removal is a piece of cake. It leaves a very small scar. For me it was a GREAT decision and I’m 100% glad I got it.
Everyone’s case is different and the side effects, circumstances, issues, severity of the issues etc varies greatly from person to person. However, I don’t recall anyone on this board regretting getting the g-tube, but maybe I missed it. My last radiation was April 6th and started eating solid foods again May 13th and I had the g-tube removed May 27th. By the middle of the summer I was feeling pretty good and by the end of the summer I was feeling great. The goal is to get through the treatments as comfortably as possible.
Good luck to you. Getting through the treatments is very doable, you will get through it.
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Thanks Russ, I think I'll go ahead with it. starting to have a hard time swallowing already anyway. How are you doing since recovery? Oh, can anyone tell me what the magic mouth rinse is? I have seen it mentioned on several posts. I have decided to go ahead with the feeding tube after reading all the info given me from ya'll. Did any of you develop another lump on your neck before treatment? My PET scan showed nothing but last night I noticed a little one at the lower part of my neck below the first one.
Thanks everyone for your help & support.
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OK, Jeri good idea that way getting enough nutrition in is guaranteed without the struggle of swallowing through a swollen sore throat. I don't think you will regret it, rather than suffer through meals trying to get them down you can concentrate on what's important. I have heard people describe it as swallowing razor blades. If you can still eat something fine. I believe the magic mouth wash is something you gargle with and swallow to help numb your throat in order to try to eat and get food past a raw throat during treatment. Check with your doctor but if you have the feeding tube you won't need it. Also, you might want to pick up a small pill grinder you can get at a CVS or any pharmacy. I got to the point I couldn't swallow anything so any pills had to be ground up and mixed with water and put through the tube but keep in mind they make a lot of liquid meds also that can be prescribed. I never had any extra bumps I would run it by your care team they are there for you and want to help in any way they can. And my docs had a person who was on call and you could call after hours which we did one time as I started running a fever.
Wishing You The Best-Take Care-God Bless-Russ
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Hello John here
Glad I joined this group. Reading all the comments has made me feel less alone with my battle. I just finished my radiation and chemo treatments. Now my next hurdle to face is the patience I need to start the side effect nightmare recovery. I'll share my experience in a moment. For know let it be known that the possibility of years of continued side effects involving eating really scares the s**t out of me. So for know I have to keep positive thoughts of a quick side effects recovery. As negative thoughts will surely be the death of me. All your suggestions on side effect maintenence have helped me realize that I probably would not be in such pain had I adhered to a more strict regement of side effect maintenence. (Never to late to start, right. lol) So I hope my story helps others to make choices in there treatment to minimize the anger of all that they are going through.
It's started out as what I thought was an infected gland it my neck. Something that was not to alarming. Got 2 weeks of antibiotics with no positive results. At this point I realized I had a serious situation at hand. A referral for a biopsy is where it started. Now up untill now I only experienced an annoyance with my symptoms. Having a positive nature in life I was ready to hit this with both feet on the ground running. Know I'm here to tell you before you go in for a biopsy remember to take some heavy pain meds before procedure. I didn't and what a regret that was. "Okay John here's a little local shot for any pain or discomfort." "Okay" I said. What was I thinking. The mass on my neck surrounded by a thick layered membrane. Imagine an orange and the protective outside layer the peel. "Okay John you'll feel a little pressure just before I take the sample." as he slowly pushed the HARPOON into my neck the layer surroundlng my mass was not going to give in that easy. He pushed and pushed on the harpoon until finally POP it entered the mass. I nearly jumped off the table with pain I was not ready for. They took 3 samples. I don't recall anything after the first sample. My thoughts were okay it's not the techs fault don't jump up and grab this guy and put him onto the floor. Hich wouldn't have taken much effort on my part. Waited for results and on my 62nd birthday was told yes I had the big C. Now as a person with a lot of conviction I was ready to face this challenge. Discussed daily radiation and weekly chemo, and was informed of possible side effect and preventive measures. A feeding tube hell no ain't happening. Probably my first bad choice I made. For @ 2-3 weeks they asked about side effects I might being experiencing. Having a sense of humor I boasted how I could do this standing on my head. Besides if I lost a few pounds it wouldn't be a bad thing.240 lbs 6'-1" I jested I'll get that six pack back I lost so many years before. (not laughing that much now at 187 lbs). And then just like turning a light switch it went all bad from there. Always joking around with the techs mentioned "I'll get thru this as long as I don't lose my funny bone, so be careful with the treatments" one day I woke up and could not find my funny bone. Took me all weekend to find it. lol
No nausea but my sense of taste changed to the most vile situation, all food or anything for that matter that past my lips turned to what I can only describe as being fed a spoonful of Crisco marine coated with flour and a pinch of baking soda. My mind rejected every attempt to eat. Telling me "honestly are you actually going to try this again" trying all different ingredients not one thing changed. Soda pop was like Pierre water with a pinch of baking soda, water being my new nourishment was like someone sat me on the ocean beach with a cup and was told dink lots of water. OMG you can only drink so much salt water before you start thinking what the hell did I do. Now only able to eat a small handful of plain pasta noodle and protein drinks, which tasted like sea water was begging for the feeding tube, only to be told, not a good idea comprimised imunne system and all. Only half way thru treatment and was already contemplating giving up that the cure was going to kill me before the "C". And the promise to my 4 year old Grandaughter to complete treatment kept me from running to seclusion and waiting for death to take me away. Finally done with treatment. I'm not to sure how I made it this far. No one seemed to understand that when I said there is NOTHING, NOTHING on this planet that will not turn to vile greasy substance in my MOUTH. At one point told the Dr. next person who tells me to try something different will be force fed by me a spoonful of grease, flour & baking soda, 3 times a day for the next 3 days. Got heads turning now at this point. Worst part of it all was always feeling like I was starving to death, retaining my sense of smell. Everything smelling so delicious and knowing to not fool myself into trying it anyway. Grocery stores, our fridgerator was off limits at all costs. A withering pile of flesh now the only consulation to push forward was a speedy recovery of side effects and a promise to not subject myself to this kind of torture ever again. So here I am grasping at anything to stay focused on completing my treatment. This is where all your testimonies come to my rescue, by the way thanks so much. 32 years of marriage to a narcissist has brought my whole life to a whole new level. (what doesn't kill you makes you stronger lol) Have to admit though have made new friends & was able to make others smile every day. Can't wait for taste to return because I'm moving into a all-you-can-eat restaurant for 3 days. lol
Thanx for sharing your time with me and all your good advice.
To all Have a Blessed & Speedy Recovery.
Joh
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Please excuse all typos, lol. John
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Thanks, John for your very frank description of what you went through. As you have read on here many times it is some of the worst most difficult treatment but as you found out once you go through it you think it's worse than they even described. Your testimony will certainly help others if they pay attention. I too had the style biopsy you describe with my last cancer episode. Although not much pain like you had it is certainly a different experience as they push the instrument in and they let you know a sample is imminent and you get the snap of the sample being taken under flesh sort of like underwater.
I like you're coming forward and being honest about your choices not necessarily being the right ones on looking back. I am a big proponent of feeding tubes especially if your team recommends one I tell people don't turn it down but as you say not a good decision to not get one. You certainly lost a lot of weight. Over 50 pounds. As you say you had a good sense of humor going in and a can-do this no problem attitude but as you found out this treatment has a way of testing and humbling a person. It is funny you should write this now because I just recently wrote in another posting to not take this lightly because "it has been known to bring big strong men to their knees". Your post brings back memories of how hard this treatment is how I know I was at a point where you just go day to day waiting and getting through each day and hour and finally one day you get up and think to yourself, ya know I think I don't feel so bad today. And it gets better and better slowly after that.
Thanks for your straightforward honesty and your describing your taste experience and the many other aspects you described and how you endured and got through this. So glad you are headed to the new rest of your life and your testimony here is sure to educate and inspire others.
And I am so glad you found knowledge and help from the people on this forum.
Wishing you the best-Take care-God Bless-Russ
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Jeri, I did a search but the new system does not allow posting search links. But here are some links to known natural pain remedies--
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I hope this may help in some way or try searching "natural pain remedies for cancer patients" and you can modify the search phrase or add to it. Seems to be a lot of info out there but you have to sift through it. Wishing You The Best-Take Care-God Bless-Russ
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