Half-way point...Scared about long-term side effects

 My husband had a similar plan of rads and weekly chemo for oral tongue cancer back in late 2015-early 2016. He had the same issues you describe for your wife, and was only able to eat via PEG tube. But I can confidently say that while his saliva isn’t 100%, he is doing really well. Eating almost everything he used to, working full time, etc. He cooks almost every day, even. Life is really good for us. The side effects are likely not permanent,  and they will go away. Talk to your docs and see what they suggest for treatment (my husband liked neutra-sal) but hopefully she can keep going. This is all likely a hard, albeit temporary, bump in the road.

I completed 35 rad and 2 chemo (  modified from 3) treatments one every two weeks, in Aug 2017. Also 61 with no other health issues.

To put it bluntly treatment was difficult, recovery was a b#@^&.  

For me - everything happened so fast, no easing into any of it.  The inability to eat or drink, the mucous, the pain...but the recovery came the same way. One by one the side effects lessened or disappeared, no warning, not gradual, just woke up and there gone.

I still have some, difficulty swallowing, not impossible just tough sometimes,  limited saliva, most foods need to be creamy, I cant do spicey yet,  I cannot eat my guilty pleasure, peanuts, but that isnt the end of the world. I am not 100% on my old-normal meal plan, but I have discovered some new favourites that I never would have tried before.

I still have some struggles, but the treatment and side effects far outweigh the alternative. 

This site is a perfect place to get support for you and your wife. I wish I had found it while in treatment. It would have been very helpful for my husband.

Rodney Atkins song  -" If you're going through hell"

"If you're going through hell, keep on movin'  face that fire and walk right through it You might get out before the devil even knows you're there"

I made it, so far, undetected.

One day at a time..

D

Not going to sugarcoat it, it's going to get worse in about 3 weeks, for about 3 weeks, then, one day at a time, it WILL get better. I'll look at the elephant in the room - if she doesn't do this, she may not be here for you to "have and to hold"

Instead of being supportive  - be optomistic, push her, we've been there - all of us, on one side or another, cancer sucks, and we get thru it. We adjust. It's better than the alternative.

You can't prevent the mucos, you just have to deal with it. I found Lidocaine mouthwash much better than magic mouthwash - (sorry Matt, just couldnt)

On the helpful side - icechips were nice - smoothies - totally natural, no preservatives (they hurt so bad)

What no one seems to get is, it's not just it hurts, its like trying to drink a citrus drink over 1000 papercuts, to a stomach the size of a grape. Literally - because all i could do was a mouthful at a time.. kinda non stop (I didnt do a PEG tube)

Do not stop, delay or reduce treatment, she is almost there.

I'm a 47-year old male and was diagnosed last summer with SCC Base of tongue tumor measuring 1.8x2x3 with neck node involvement measuring 4x3. I too was told by my first team to have robotic surgery on my tongue and neck dissection. I fired them and found a center that was fine with treatment first and only after treatment assess the situation for possible surgery. I also did not do the chemo port or PEG tube. I had 35 rads and 3 large doses of chemo. I'm 6 months post treatment and I was back to 100% within just 2 months. My only side effect for the last month or more is less saliva (about 50% less, but seems to be improving).

That said, treatment was HELL. Every time I swallowed I felt like there was a huge mass blocking my airway. Some days it seemed solid and other days it felt like a large ball of thick cotton. The fatigue was unbelievable. If I could I would have stayed in bed all day. To combat this I rescheduled all my radiation appointments early in the morning (7:30am) just so I'd have to make myself get out of bed. I even drove myself everyday to my rads. After rads I drove straight to work, even if only to work an hour or so. Getting in calories was terrifying. With no PEG tube my wife couldn't even be in the house when I'd take in calories. I'd literally scream and cry, stomp my feet and cough and spit up bloody bits of throat tissue. I even made an appointment with the surgeon who places the PEG tube just to get the consultation out of the way in case I needed an emergency PEG tube insertion. I lost 40+ pounds and just wanted it over. But my docs kept reminding me that an overwhelming majority of their deaths from SCC were from individuals not completing the recommended treatment plan. The mucous was probably the worst constant symptom. It was literally so bad I could not sleep because I had to spit every 45 seconds or I'd gag. I was awake for 5 straight days at one point and didn't think I could go any further. The only thing that helped was 20+ times of gargling baking soda and salt per day, this two part powered mixture they gave me to gargle from the radiation dept. and using disposable mouth swabs (order on Amazon) to clean all the hard to reach places in my mouth with medicated mouth wash. Then, almost as suddenly as the mucous appeared, it went away and literally at my breaking point. I didn't know until after my treatment was over, but my wife would leave, saying she was running an errand, just to drive somewhere and cry, because she really thought she was watching me die.

The treatment is total hell, but it's temporary and so worth it.

The mind has a way of making you forget how terrible this all was. As I look back now, some days I can't even truly recall the agony of the treatment. Many people in my life didn't even know I went through cancer treatment because i only see them a couple of times a year. Treatment didn't get bad for me until about week 5 and that remained until about 2 weeks after treatment ended. I even experience the Lymphedema and neuropathy. But, once again, they went away quickly and as soon as I started getting out an exercising.

Your mind plays a huge role in all of this. I took charge of my treatment plan early on. I stayed positive and I constantly reminded myself this would all be over soon and I'd be back to enjoying life again. I'll be coming up on my one year anniversary of my diagnosis in 2.5 months and it's hard to imagine what all I went through in that year. But, it's awesome that you'd never know to meet me now.

Hang in there. It's doable, but you have to do it and you have to want it, every day every second.

SuzJ said:

Halfway

Not going to sugarcoat it, it's going to get worse in about 3 weeks, for about 3 weeks, then, one day at a time, it WILL get better. I'll look at the elephant in the room - if she doesn't do this, she may not be here for you to "have and to hold"

Instead of being supportive  - be optomistic, push her, we've been there - all of us, on one side or another, cancer sucks, and we get thru it. We adjust. It's better than the alternative.

You can't prevent the mucos, you just have to deal with it. I found Lidocaine mouthwash much better than magic mouthwash - (sorry Matt, just couldnt)

 

On the helpful side - icechips were nice - smoothies - totally natural, no preservatives (they hurt so bad)

 

What no one seems to get is, it's not just it hurts, its like trying to drink a citrus drink over 1000 papercuts, to a stomach the size of a grape. Literally - because all i could do was a mouthful at a time.. kinda non stop (I didnt do a PEG tube)

SuzJ,

You would, might be, wrong to declare your Lidocaine mouthwash better than my Oregon vintage with lots of good things (including Lidocaine), as less than or equal to yours. That is, without trying it.  I have learned that H&N members do like what they like and I too like what I like.

Your humor is welcome and the totally natural ice chips are available nationwide at a very reasonable price.

Your observation on food is spot on. I once put a can of Crisco on the dinner table and told my parents and siblings that this is what eating many foods was like.  While my example may have been off a little, it still hit the mark on the weirdness of taste, no-taste, feel, etc. of food.

The mouthfuls will increase and will help you to land in a good place.

Matt

Since I'm only close to halfway through my treatments - week have 7 to do, I can offer little help. My head chemo nurse said Muscinex or Robituson for me. She gave me Robitussen to use. She said thier is strong chemicals that help break down mucus. Have not tried it yet cause mucuos just starting. Also drinking water helps alot which I know is difficult but ask her to at least try. My throat hurts but I do sip water throughout the day. As others have said Don't discontinue treatments!! She will just get worse. She has to have trust in her medical team. They are knowledgable and deal with situations like hers Everyday. It by far not an easy thing to go through. Many have done it and so can she. Give her as much moral support as you can. I have 35 rad and 7 chemos to do. The chemo treatments hurting my body badly. Constant nausea/ throwing up episodes pain in abdomen extreme fatigue etc.. But I go through it and am here the next day. Please tell her to hang in there. We might be strangers but we do care and are living proof she can do it!!

My father is one week out from his 35 radiation treatments and chemo.  My mother nags him to no end about eating.  He has lost a lot of weight.  He wants a tube, but we're not sure, and the doctor hasn't recommended it.  At what point do we get the tube?  Every day is a battle for him to get enough calories.  We've been sitting at the kitchen table for an hour, and he's only managed to down a 1/2 cup of yogurt.  Did anyone swallow the lidocaine?  I'm going to look into Magic Mouthwash tomorrow.  Thanks for any suggestions.  He's not a great patient, and any kind of discomfort equals pain for him.  

I finished 30 rounds of radiation and 5 rounds of cisplatin. Because I was selected to take part in a clinical trial, my radiation was reduced to 40 on my left side and 60 on my right side which was where the cancer was. 15 months out and I have about 85% saliva and all of my taste. It is a rough treatment and I basically threw up every day, killer throat, sores and on and on. The tube helped me a lot during the last week and the following two weeks after treatment. The two weeks following the end of treatments were the worst. But as everyone says, gradually you do heal. The sores heal up and you can swallow more than sip. I used liquid morphine for the pain and magic mouthwash. Those were dark days, but I am through them now.  And you will be too. Stick with it. You got this.