De-intensification Clinical Trial
Comments
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Hi Smitty. I just finished reading this entire thread. Quite the journey you've been on. Thank you for sharing and sincere congratulations for making it through. Your experience and the experience of Russ and others on the board gives us a lot to think about and prepare for as our journey begins.
Best of luck to you going forward and God Bless!
scoleh
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scoleh - thank you for comments, I benefitted so much from what all those before me had done to make this a remarkable resource in a difficult time.
I can't believe I am 4 weeks past treatment. You will get there too.
Keep the faith and keep us posted,
Smitty
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Hi Smitty,
I am glad you are done with treatments and on the road to recovery and getting back to our "New Normal". I can't add much to your recent post but on the topic of the Feeding Tube. One cause of stomach discomfort is if we have Hot or Cold feedings, the stomach says "No, No and No". I always did room temperature feeding. I still let my food adjust to room temperatures before eating.
Thank you for the update. Take Care.
My Best to You and Everyone Here.
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Smitty, thanks for the update, hard to believe it is 4 weeks since treatment finished, how time flies.
So glad you got your rash fixed up, that was a real pain in the a$$.
So you are a Hershey med guy too, they take great care of you. They got you tested out and fixed up, just sounds like you overdid it a little all at once.
Thoughts on swallowing, I don't remember exactly how long it eas till I could swallow and get something through again. In my case it was probably several months. I could get nothing through. It will be just tiny bits at a time, a sip of liquid you can swallow or a spoon of something easy to process like mashed potatoes, applesauce, pudding, something normally easy to swallow. It will just take time for the swelling to go down and being able for everything to function again and for things to go through. Every day or every other day or once or twice a week for now just try to swallow a sip of liquid or a bit of applesauce. And suddenly one day it will go through and you will say to yourself and anybody else in the room "hey I can swallow again".
As you have already found out recovery is a slow process and swallowing recovery is part of it at the same speed.
NEGU (Never Ever Give Up)
Wishing You The Best
Take Care, God Bless
Russ
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Hello Everybody! Time for an update. Today is 5 weeks since I finished the zappings and poisonings. Really hard to believe - it's November already!
Anyway, my status...
Neck - all healed up; scar and "stuff" is still very tight. PT therapist is really working this.
No more stomach pain at feeding time since I do less at one time now. Having another swallow study done in a couple of weeks. Therapist wants me to get 2 Ensures or Boosts or some such in per day by the time of the study. They are thicker and also a start to replacing tube feeding. It is difficult though, a slow go.
Mouth - not so much mucous, if fact not so much anything - very, very dry. Come on salivary glands! I am finally using the dental trays, my mouth is opening better each day.
PET scan scheduled for 12/15. Fingers crossed.
Skin - I'm really sick of this damn rash. It's like playing Whack-a-Mole. The clobetasol has worked really well, but new areas keep popping up. It is really itchy. Following up with the dermatologist tomorrow. Grrrr....
So, all-in-all I'm doing well. There are really only 2 things right now that occupy most of my thoughts about all of this. First, getting a clean scan and second, getting my swallowing back. The 2 very important things.
I appreciate thoughts and prayers. This site and those who have reached out are the best. Thank you all.
Peace, Smitty
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Smitty, thanks for the update.
Neck all healed up-Check!
Stomach pain gone-Check!
Two boosts a day should maintain of help you gain weight.
Dry mouth, many of us deal with it, we know where you're at.
Prayers for a clear PET 12/15.
Chasin a rash around your body, is not my idea of a good time.
All things will come in time it is a slow process.
Wishing You The Best
Take Care, God Bless
Russ
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Hello All - a quick update...
Swallow study went very well! Even though it feels different when I swallow, all the important things are working with no aspiration. So, the therapist wants me to drink thick liquids for now, Ensure (mixed with something, obviously. No person could drink them as is... ) and the like. I have some narrowing from the radiation but she isn't worried about that until we see if it's problem when I'm eating solid foods. Then maybe a dilation. One step closer to that cheeseburger!
Anyway, great relief that the parts and pieces in my throat didn't get completely wrecked by the rads. Now if this damn rash would clear up...
Peace, Smitty
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YaY again for Smitty, passing the swallow test with flying colors.
So glad you can swallow and did so well on the swallow test and above all No Aspiration.
OK, so you are up to thick liquids, did she say you could start trying small bites of different regular foods? And how about things like applesauce, pudding, etc? Either way, it won't be long now till you do in fact get that long hoped for cheeseburger. It seemed far away when you started treatment but now you are through treatment and almost there, back to regular eating again. I agree it is a relief when going through this and you get to the end and find out your throat and swallowing is still intact, what a relief.
I am so surprised the rash hasn't abated yet, have you mentioned it to your docs?
This calls for a celebration, at least a small one.
Wishing You The Best
Take Care, God Bless
Russ
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Hi Russ, I have been following a couple threads including this one, and want to thank you for your advice and encouragement on multiple subjects. I am 2 weeks out of 70 Gy and 200 mg of cisplatin (5 infusions) and I am wondering if you could elaborate on your journey to your new normal with regard to side effects. E.g., how long did you keep the salt/baking soda rinse going, or are you still doing it? Do you carry a water bottle? How hard was it giving up foods you used to enjoy and can you give examples? If you have already addressed these topics in another thread please send a link.
Thanks and God bless
Ed
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Hi Ed, no problem.
OK, side effects will be at their worst when you finish treatment and up to several weeks beyond that. Any side effects you get from treatment should diminish with time. Some people are very Blessed and do not have a lot of side effects permanently or if they do they are not severe. Then there are people in the middle ground who have average side effects moderately severe. And of course, some in the last group were very severe. You can also have one side effect that is pretty bad such as lack of saliva but on the other hand, get a lot of your taste back. So all these varies as per patient and as per treatment. The big thing is to adapt to whatever you have as side effects. It is not what you have as much as to how you learn to deal with it.
The salt and baking soda rinse was used during and following treatment for the thick saliva, once that went away I quit using the rinse.
I either have a water bottle with me, a coffee mostly, and many times chew gum high in Xylitol because treatment has left me with reduced saliva. Chewing gum stimulates saliva. Xylitol stimulates saliva. Choose a sugarless gum high in Xylitol. You do that by looking at the ingredients and the closer xylitol is to the start of the ingredient list the more xylitol the product has in it. There is also a product to use especially at night but can be used anytime called Xylimelts. Keeps your mouth moist as it dissolves and on one side of the disc is an adherent that sticks to your tooth or gum which makes it good for sleeping because it stays put.
Giving up foods I used to enjoy was mostly done during and after treatment for several months when I couldn't swallow anything, it all went through the feeding tube. Once I could start eating again I managed to get to the point of eating anything I did before. However, with the effects of radiation on my throat and long-term effects I can't swallow as much at a time so it takes men twice as long to eat. So there are foods I avoid because they are just difficult to eat. But I am just thankful I can eat, I know there are those that can't. The other thing I have is damaged taste buds, I think I can taste about 30-40 percent of flavor post treatment which is just enough to be satisfactory. Again I am thankful because I know of those who have not gotten their taste back. God has greatly Blessed me for sure.
I hope this helps if you have any more questions feel free.
NEGU (Never Ever Give Up)
Wishing You The Best
Take Care, God Bless
Russ
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Happy Thanksgiving and thank you all for the feedback!
The only news this update is that the dermatologist has changed my rash medicine from Clobetasol, a steroid, to Pimecrolimus, not a steroid. The Clobetasol does clear it up, but it pops up here and there in a never-ending game with the medicine cream. I hope this new stuff finally gets rid of this annoying crap. It must be related to the dandelion family.
Anyway, despite being itchy, this Thanksgiving I am thankful for all of you on this site, for my healthcare team, and most of all for my caregiver wife, who has endured this adventure with me and kept me positive throughout it all. It is as challenging for her as a caregiver as it has been for me. I am thankful I am loved by such a special lady.
Peace, Smitty
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Hi, Smitty, thanks for checking in, and for your Thanksgiving well wishes. Hopefully, this new medication will get the rash under control once and for all.
I agree Smitty we all have much to be thankful for and we are truly Blessed.
Congrats to the wife for being a wonderful caregiver and cheerleader for Smitty.
Congrats also Smitty for enduring all this and making it through.
NEGU (Never Ever Give Up)
Wishing You The Best
Take Care, God Bless
Russ
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From one Smitty to another hang in there as it get better each passing day. I’m a little over 6 months post treatment with a very similar disease course as yours and the “new normal” is not too bad all things considered. God bless you and keep on keeping on!
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Hello All... thanks for the feedback, it means a lot. Time for an update. I wish it were happier news, but I'll get there. For now though:
Rash - ugh. Back on the original steroid cream 1st prescribed months ago. Dermatologist took a biopsy, will get results in a week. Terrible itchy bumps everywhere, though the cream is maybe cooling the itch a tad. Horrible nights, up 5-6 times slapping other anti-itch goops all over. Out of my mind. Shear torture. Derm dude says he can clear it up... hopefully soon! See him again in a week if I haven't been institutionalized by then.
Dry mouth - ugh #2. I think I have thrush. White crap all over my tongue. I see the surgeon in a few days, we'll see what he says. Went from terrible dryness to now a bit of slimy sliminess. I haven't been using anything like Biotene or Xylimelts because for me it just made a goopy sickly sweet mess and didn't really moisten my mouth. But I was amazingly dry, especially in the morning waking up, so I guess the thrush mushrooms saw a chance to contribute to my overall misery. Sigh.
Eating - big ugh, #3. Having a hard time finding things I can tolerate. Being so dry and with some narrowing if it's not runny it's hard to swallow, even with water before and after. My taste is odd as well, and it's so much work for my throat muscles it is weirdly very tiring. I'm going to try some fruit cups today. Hopefully I soon find some things that are tolerable because I need to get this feeding tube OUT.
So sorry if this update is demoralizing. I'm exhausted by all of this and just feel a little sorry for myself. Alive but not really living.
Better days ahead, Smitty
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Smitty thanks for updating us on your current condition/status.
Oh my Smitty, you are going through a rough period, sorry to hear it.
It is not unusual for someone in H&N treatment to have multiple things going on since they give us some heavy-duty treatments in a critical and sensitive area. And all the treatments have well-known side effects. But who needs it, right, you are ready for this stuff to go.
But don't forget H&N treatment recovery is a slow process spanning weeks and months so it is not a quick recovery but you eventually GET THERE.
Hopefully, the biopsy sheds some light on your rash issue. I have never heard of a rash issue or skin irritation connected with H&N treatment hanging on like this. We've all had them at one time or another (Constant Itching) and can relate to the sheer annoyance of it that can drive you nuts, so Smitty I commiserate with you and hope it is soon finally done soon.
Your mouth seems to be in a difficult phase now but hopefully, you are almost out of the thick saliva from the radiation phase. It sorta sounds like you are at the end of it possibly and mainly dealing with the dry mouth. I believe the thrush is an easy treat, I had it I think a couple of times, and I believe they give you a 10-day run of antibiotics, hopefully, that's all it is and it can be gone soon.
Eating through this is a challenge, almost a job because it seems like so much work. You are having a tough time with this right now and it is probably because it is hard for you to consume the amount of calories you need to maintain your weight. Now is the time to use the feeding tube, in fact, it was put in for just such a time. Use your feeding tube as your main source of nutrition for now and eat all the comfort food you can or get in whatever you can without so much difficulty. Your feeding tube is your friend and your lifesaver when you need it, you'll be surprised it will be gone soon enough. Do not have your feeding tube removed until you can maintain your weight for two weeks, check with your care team for their take on it.
No need to apologize for an update that is just not all good news, that is why we are here to talk to. I know well what you are going through as do many others, it is a very difficult path and is not to be taken lightly. When you said about eating and throat muscles and how it was weirdly tiring it brought back memories of me going through the same thing and how at the time you can't believe just eating would seem exhausting but it is in this situation. It seems you are right on course for the treatment you went through. Smitty hang in there it won't be much longer that at some point, suddenly you turn a corner and get up in the morning and after a bit realize "Hey ya know I don't feel so bad today", and the next day just a tiny bit better, you will feel it the improvement, the changes, just a little better each week, etc. Don't forget you just went through some of the nastiest treatments around, you're are going to feel bad, so sustain yourself you will get through it, we're pullin' for ya and praying for your full recovery into a once again cancer-free life.
Wishing You The Best
Take Care, God Bless
Russ
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In other news...
Tomorrow - PET scan! Fingers crossed. This will hopefully be all clear and will lead to the port getting removed. More below.
Follow up with surgeon went well. He's happy, I'm happy. He is not expecting any surprises on the scan. Also, no thrush! Yeah, because the medicine for that is horrible!
Follow up with the Derm dude - biopsy surprised him, but not us! It is NOT eczema or atopic dermatitis or any other "skin condition". It is a hypersensitive reaction to "something". Only 2 possibilities - 1. Chemo or 2. plastic inside me, i.e. port or feeding tube. I believe the chemo kicked it all off during treatment, but the docs think it should be gone by now if that is the case. Soooo, if I have a clean scan tomorrow, I will start taking methotrexate and see if I can finally get rid of this damn squirrel mange. Also they will schedule getting the port out asap. As far as the feeding tube, I gotta work on getting enough in me without it so it can go bye-bye as well. I can't wait to get a good nights sleep. Finally.
Russ - thank you for taking the time to share words of wisdom and your experiences. I appreciate you brother!
All for now - appreciate thoughts and prayers for tomorrow.
Peace, Smitty
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