Jakesaround and Kenny- are you guys making it?

Karen, I'm still hanging in there. The word is 'hanging in there' and have done 22/35 treatments and 5 weekly chemos.

I've been fortunate my mouth sores has not escalated, but my throat is beginning to feel pain and it's sensitive to gag motion. I also am experiencing other side effects such as tinnitus that happens about 10x/day. My digestion, is still not good. I'm barely able to get 1,500 - 1,700 calories in. Trying my best. My bloodwork so far is good. Dry mouth is a big pain, I still have a bit of thrush and my tongue is coated with white stuff. I've been on diflucan and nystatin for close to 15 days! I'm rinsing my mouth about 8x a day just to keep it under control (seems to 'halt' the condition from getting worse) - I don't want a candida infection.

I've been on 'duke's solution', some people call it magic mouthwash or swish and spit for 3 weeks now. For me, I needed it to eat, and it seem to be halted my sore mouth to a stage 2 since week 2. I was so worried about that week 2 sore mouth and I'm glad it's staying where it is. I had to significantly change my diet and perhaps this magic mouthwash may have done the trick to keep it where it is. I'm also doing occasional manuka honey whenever my throat feels weird. Just a 2x tea spoon of honey diluted in about 4 oz of warm water that I drink down to keep the throat 'lubricated'. I've also recently started taking ganoderma pills to boost my immune system (just about 3 days ago). 

Externally, I've lost some hairline at the back. Didn't realize it until my wife told me it looks 'strange'. And true enough, my hairline at the bottom of my head (nearer to the neck) has receded. It doesn't bother me. I've also had radiation burns on my neck that I'm trying to keep under control as it can get itchy.

Its' too early to say how this will play out. I have 2.5 weeks more to go (still quite a long journey). I've accepted the fact that I may need to live on ensure (or thinned out smooties) very soon, but I'm really hoping no PEG. 

But bear in mind, like the wisdom, says every person is different! Just take the precautions seriously to minimize all potential effects!

jakesaround said:

Still alive...

hey Karen,

so i have been pretty quiet lately and you can probably guess what that means... im not doing very good. I basically hit the "wall" last weekend with this treatment. from last Friday till Sunday the mucus drainage from my sinuses has gotten worse and worse causing me to gag and vomit a lot. I think on Sunday I had vomited 3 times in 12 hours. It absolutely wiped me out and I hit my limit. I could not consume hardly any calories or fluids since last Friday. my radiation doc offered for me to take a break from treatment so that is what I am doing. I am taking the week off from chemo and rads to try and recover some. I am suppose to meet with my rad doc tomorrow to talk and my chemo doc on Monday. all the vomiting has also really hurt the back of my mouth and throat. I do have sores back there now and it is painful but manageable to swallow. I have finished 4 weeks of treatment with 2 to go. I have gone in for fluids everyday this week and I think it is helping me to regain some strength and feel a little better.

i hope you are doing well through your first week and keep yourself fed and hydrated it will make a big difference once you get past the halfway point of this treatment.

last week I was really doing pretty good and hanging in there. I was even so optimistic that I was going to post a new discussion topic on whether or not the treatment and its side effects get progressively worse as you go or if you just sort of feel crummy and its stays that way for the remainder of treatment. But now I know the answer to that question... It gets worse as you go and it can happen overnight. I don't want to scare you just help you be prepared and try to stay ahead with fluids, nutrition, mouth care, anti nausea meds, and all of it.

ttyl,

jake...

Jake I have been thinking about you a lot since I knew you were getting around to the really horrendous weeks of treatment. I'm so sorry you have hit such a wall and are having such severe side effects. Is your chemo every week or is it at intervals throughout the radiation? Have you taken your week break yet or is it upcoming? One thing to ask your doctor if you haven't taken that break yet is whether to continue radiation for that week and just take a week off from the chemo. There are some studies that indicate radiation is most effective in preventing local recurrence if it's continuous...that was something our radiation doctor pointed out to us. So even for the week my husband was hospitalized for neutropenia and other side effects they wheeled him down to radiation for his daily dose.

My husband had a lot of what you describe as the mucus drainage/gag/vomit cycle. It is so hard and we didn't find a good solution to it, I'm sorry to say. The best we could do was to try and bring up/out the mucus frequently so he didn't feel like it was draining down into the esophagus. At one point - even while he was "sleeping" at night he woke every 2 hours at least to try and clear it. Sometimes he would try and drink something knowing it would induce the vomiting just to bring up the mucus....and then proceed with the tube feed. For a couple of weeks all he could tolerate was this stuff called Boost Breeze which is a clear liquid version of Boost.  I know the hydration will help so if you need to go in for IV fluids, don't hesitate.

Step by step Jake...keep clicking those days off and you WILL get there. I'm throwing a virtual quilt over you that represents a long distance hug, accompanied by prayers for strength to get through the last couple of weeks.

Barbara

Hey Karen...

"Big brothers" Kenny and Jake are going to get through this and so will you...

We are all keeping you in our thoughts and prayers. It's such a bumpy bus ride, but it does have a destination and an end point. You'll get there!

barbara

Kent Cass said:

Typical

Typical might not be the correct word to head this entry, as I only had the vomits twice during tx, but the rest sounds typical. Having a PEG before tx started, I didn't struggle with getting nutrition into me; however, the amount I felt I could handle did become a problem. I was told I needed 2100 calories/day, which meant some 3-4 cans of Jevity, but there were a couple weeks I was doing good to just get 2 into me, which might be partially why the 2nd 96-hour Cisplatin and 5-FU infusion rendered me incapable of getting rads in weeks 5&6, and put in the hospital at the start of week 6 to get antibiotic drips. And so, yes, taking a break from getting rads also happened to me.

As for the hair loss- typical. Back of my neck had burns and got the Aquaphor, and my hairline in the back really took a hit. One of the other things to think about: I haven't shaved my neck below the chin/jaw for the last 6-1/2 years! Took a year before whiskers started to show on the left side of my face, too. Still majorly thin, compared to the right side of my face. Always had a moustache, before tx, and it was some 4 years post-tx that I dared to try and re-grow one, and was able to.

Good to hear you're getting thru this okay.

kcass 

Dang Kent...I'm not going to show my husband your post....I don't want him to think about growing his goatee back - i never liked it in the first place!

Barbara

Kent, 

Did you also use flouride trays during for your treatment? my daughter (baby) misplaced one of them and I haven't been doing it diligently ever since (probably once every 3-4 days). I gotta get a new pair  

kdot,

Hang in there! I've only 23 out of 35, definately not over but more than half way there! I'm eating pretty much very soft stuff in soups. Usually bone broth soups with rice (that's soaked in the soup to soften it up), along with some really soft veggies (carrot, spinach, seaweed, mushrooms, etc), and egg drop (protein). For me, i find that it works if the soup is 'slimy' i.e. easy to glide and less friction/abrasion. The rice tends to 'glides' the soup a bit, but you can try cornstarch it does the same thing. That said, I can't taste much so my motivaton for eating is just to get some real food into the body. I'm also doing 2-3 bottles of ensure a day as the food I consume is not enough. I also take soft desserts stuff like red bean soup, with coconut milk to spike the calories. just Like Kent said, it's tough to get stuff down as the digestion is just a mess along with the high fluid intake. I've been strictly avoiding anything acidic, spicy, or risk of latex (avocados, bananas, etc). I even cut milk out from my diet and used ensure instead just to avoid lactose intolerance. 

The magic mouth wash i have is swish and swallow (I may have said spit, it is swallow). I can tell that it messes up the stomach a bit, but no choice. 

I do take lactillus basillus daily to help maintain bacteria counts. I've been doing that for about a month before starting treatment tough. But like barbaraek mention, taking it in the middle best to check doctor's advise. my dietitician said it'll be ok, and I haven't really got any bad experience with it but I started before treatment so my body may already had a balance of gut bacteria at that point. 

Kenny- said:

Kent, 
Did you also use

Kent, 

Did you also use flouride trays during for your treatment? my daughter (baby) misplaced one of them and I haven't been doing it diligently ever since (probably once every 3-4 days). I gotta get a new pair  

 

kdot,

Hang in there! I've only 23 out of 35, definately not over but more than half way there! I'm eating pretty much very soft stuff in soups. Usually bone broth soups with rice (that's soaked in the soup to soften it up), along with some really soft veggies (carrot, spinach, seaweed, mushrooms, etc), and egg drop (protein). For me, i find that it works if the soup is 'slimy' i.e. easy to glide and less friction/abrasion. The rice tends to 'glides' the soup a bit, but you can try cornstarch it does the same thing. That said, I can't taste much so my motivaton for eating is just to get some real food into the body. I'm also doing 2-3 bottles of ensure a day as the food I consume is not enough. I also take soft desserts stuff like red bean soup, with coconut milk to spike the calories. just Like Kent said, it's tough to get stuff down as the digestion is just a mess along with the high fluid intake. I've been strictly avoiding anything acidic, spicy, or risk of latex (avocados, bananas, etc). I even cut milk out from my diet and used ensure instead just to avoid lactose intolerance. 

The magic mouth wash i have is swish and swallow (I may have said spit, it is swallow). I can tell that it messes up the stomach a bit, but no choice. 

I do take lactillus basillus daily to help maintain bacteria counts. I've been doing that for about a month before starting treatment tough. But like barbaraek mention, taking it in the middle best to check doctor's advise. my dietitician said it'll be ok, and I haven't really got any bad experience with it but I started before treatment so my body may already had a balance of gut bacteria at that point. 

No, I did not, but should have. My Drs and Dentist had no clue that I should have. 1-1/2 years after tx I drove out to the U of Iowa and talked to the head of the Dental Department at University Hospital, and he said I should have been on trays before, during, and for the rest of my life- said that's been the standard at the U of I for almost 30 years! Another example of how un-informed Drs could be: none of my Drs or Dentist in the 350,000 people Quad Cities had a clue about it. Now, thanks to me, it is standard for H&N in the QCA. And my dental bills, post-tx, are around $12K, with the tops of 10 teeth having been rebuilt, with two of them twice. Flouride might have helped, just as tooth guards covering the teeth during the rad sessions could have. I was the QCA guinea pig, I guess!

kcass

Kenny- said:

Had my trays remade again

Thanks Kent. I just had mine remade again. Can't believe these plastic trays are so expensive! I'll need to check out those tooth guards tough. My rad did tell me about the trays but he didn't mention the tooth guards.