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

kmadlom

Greetings,

My spouse had robotic surgery Feb. 16 to remove a 1.2 cm tumor from the base of her tongue. It was HPV positive. At the same time, the surgeon took all of the lymph nodes from the left side of her neck. Pathology showed three of those nodes were cancerous and two of them showed extranodal extension. So, that meant 30 radiation treatments and concurrent chemotherapy once a week for six weeks. Tomorrow starts Week 4. That means we have 15 rads and 3 chemos left.

The side effects are terrible. She has painful mouth and throat sores. Her throat feels like it is almost closed...she says it's like there is a big lump in it. She can only get down liquids and that's an effort. She can't even swallow a pill.

We've tried everything to prevent the mucositis including four hours a day on a nebulizer with saline to humidify her mouth and throat, MuGard, L-glutamine, Miracle Mouthwash and, of course, the baking soda/salt combination, which she uses at least 10 times a day. Even so, the mouth and throat sores came.

She is considering stopping the chemo immediatly and cutting the radiation back by a week because she fears she's going to spend the rest of her life with taste, saliva and swallowing issues. She's 61 and in great health otherwise.

I'm searching for some people who have finished a similar treatment plan, had these awful side effects, but are back to enjoying their lives, including tasting food and being able to swallow.

Thanks so much for your time. I wish you all well.

k

 

 

swopoe

 My husband had a similar

 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.

CivilMatt

Been there, side effects what is that? I wish

kmadlom,

Greetings back at you.

The side effects can and are terrible, but are worth every mouth sore and all the  crap that comes with this “save you’re a _ _” plan.

I am one of the members who happily admit I am in my New Normal and life is good.  My taste has changed a lot, but I can eat everything I want and some foods are delicious.  I have dry mouth and use Xylimelts with great success at night. I belong to the better-not-forget-your-water-bottle club, but things could be far worse.

Unless her team agrees, I would not delete any treatment. Many H&N members do well with modifications to their plan (to be sick all the time is silly).  Hopefully, some good suggestions will come of this post.  The one thing you mentioned that I loved was the magic mouth wash. Six bottles, sipped, swished and swallowed, it was so good!

I very much enjoy life.  Cancer may make a deal with you, but DO NOT trust cancer.  It is devilish, with a one track mind.  If it was easy they would call it a needed vacation, but they don’t and it is not.  You are now in the H&N Zone and we want you cured and out of here.

Best of luck,

Matt

debbiel0

I completed 35 rad and 2

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

DarcyS

Almost 100%

My husband is 5+ years after treatment for ssc of the piriform sinus, T1N2bM0 stage 4 and he is doing great and life is good!  Treatment and recovery were long and hard.  He was on a diet of only ensure and water for 2 months or more.  About 6 weeks after treatment he started to eat very specific foods that sounded good and after a few more weeks he was eating almost everything and his taste buds slowly returned to normal.  Please talk to your care team about the side effects she is experiencing and tell her to hang in there.  There is light at the end of this tunnel!

SuzJ

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)

Frances_S

Most of the side effects will

Most of the side effects will decrease over time. My husband age 62 had 35 radiation treatment, 1 Cisplatin treatment, they had to change his Chemotherapy to Carboplatin/Taxol. He is now 4 1/2 months post treatment. It is a very difficult treatment to endure. She should try drinking "High Calorie" protein shakes and fluids. Her doctors can prescribe what she needs to get her through this, for pain, nausea, etc. 

My husband improves everyday. He has some saliva, but still experiences a dry mouth throughout the day. For a short time, he had a problem swallowing, so he went to see a swallowing therapist, and is now able to eat all foods. I would say his taste is 90% back to normal. His only complaint is the dry mouth. 

I wish you both all the best. 

 

 

OKCnative

Do not stop, delay or reduce

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.

 

Dean54

Mine was tonsil cancer

With some lymph node involvement and had 33 rad. with 3 chemos and I was one of the lucky ones as I didn't have to even use the peg tube, had very little mouth discomfort, and no skin issues from the rad.

I do have the reduced to almost non-existent saliva which makes eating a total chore and also very little taste with what taste I have as I'd say "not so good". Nothing tastes as it should and being an old man weight lifter trying to get 3000+ calories a day, a struggle to say the least.

So I guess there are trade offs as most of the fine people on here have gotten their taste back but they probably had more difficulty with getting thru the treatments than I did. Mine (taste) doesn't look to be coming back anytime soon and slightly worried that what I do have might be as good as it gets which will be a big disappointment as it hasn't really improved ANY since this whole mis-adventure started.

CivilMatt

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)

my magic mouth wash was MAGIC

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

Tallkidsmom

Hang in there

A year ago I was in the same position your loved one is now. Just keep doing whatever she needs to do to keep swallowing, and before you know it this will all be behind you. I was able to keep my caloric intake up for several weeks by using high-calorie Boost, and lots of Mary’s Magic Mouthwash and fentanyl. In a few weeks this will all be behind you. 

Suez39

Mucuos

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!!

kmadlom

Thank you so much. At chemo right now

Hi all,

Thanks so much for the responses, tips and encouragement. She didn't quit last week, and I think her resolve is a little stronger to get through this. She read all of your responses, and that seriously helped.

We are in chemo as I write this. She had her 18th radiation treatment, so just 12 to go. After today, two more chemos. The mucositis is terrible. Even our oncologist said today she has a particularly bad case in the back of her throat. She was so dehydrated today that getting a vein for the chemo was a challenge. Our doctor has prescribed fluids three times a week, so that's three more sticks each week, but it will keep her hydrated.

As for nutirtion, for the past two days she got down one Boost each day and a cup of broth. That's it. Everything has to be thin for her due to how swollen/closed her throat is. I'm open to ideas of something thin that carries a nutritional punch. Even ice cream is too much for her unless I heavily dilute with cold water. The problem is that creates a lot more volume and she's only going to get down 12 ounces of whatever i give her.

If we keep going like this for the next several days, she may end up on a feeding tube and she really doesn't want that. I keep telling her she has to push through the pain of swallowing, but that's easy for me to say. There's no shame in a feeding tube, I know that. I think it would relieve some stress at this point. However, she made not getting one a goal of hers.

Thanks for listening. I know I'll be back with questions, etc. This site has already helped us so much, just reading through the Head & Neck discussion board.

Best wishes to all.

guessmykat

Help with father's cancer

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.  

 

ProustLover

Feeding PEG is making all the

Feeding PEG is making all the difference for my husband.  He, too, wanted to avoid the PEG, and relied on liquid supplements until the state of his tongue and mouth made that impossible. He finished treatment last week, but will be using tube for for some time to come.  His weight has been stable since starting the tube.  Getting it installed during treatment was a hassle, but the procedure itself was smooth.  Pease share with your spouse that life is so much easier for many with the tube. So many other issues for her...and you...to contend with at this time.  Why not take calories off the list of worries if you can?  Bet wishes with whatever route you choose.

AlreadyOne

I agree

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.

SuzJ

Towards the end of treatment

The only way food was going down, was with pain meds, and lidocaine (and yes its ok to swallow)

The one thing I did get was the port (central line) because we are putting Drano thru our delicate veins, and no matter how good your veins are, at some point (usually when you are dehydrated) you are going to need that line in.

 

That was the only time I took pain meds, and I took the lowest dose I could, UNTIL the weeks after radiation. then it HURT and I took the big stuff.