To continue or not

Aanchal Kanodia

Hi everyone, 

Here is a brief of my story-

My mom was diagnosed with tongue C T2N1MZ on the base of her tongue. She had a successful surgery and is going through radiation. So far not good. We are three weeks into it and she is not taking it well. I fear if this is her situation now what do we have in store in the future. The problems that she is facing include fatigue, immense depression, loss of taste, stiffness in the neck, problems swallowing, loss of appetite, loss of weight, body pain, burning in the skin, coughing and the worst of all nausea and vomiting. On bad days which are usually alternate days we literally have to sit with a bin because she keeps throwing up. It's heart-wrenching to see her like this and now we are considering stopping the treatment altogether.  I just don't know how to help her anymore.

Do we really stop it? Is it doing more harm than good? I fear taking away her quality life. I know if it wasnt doable no body would be doing it but then again not eveyone is the same. 

Thinking of starting hemp oil or cannabis oil treatment? Though its illegal here but i dont care if it gives her relief! 

 

 

Dean54

Sorry to hear that

The oil was illegal here also but I didn't have any trouble getting it mailed to me but can't say for sure it really did anything at the time. I personally think it was the pain meds that helped the most.

I guess I was lucky but I didn't have hardly any of those problems from the rad., just the loss of taste and the thick stuff in the back of the throat both of which I still have.Oh and the depression as soon as I got off the pain meds as they have a way of masking what is really going which may or may not be a good thing.

I don't know her age or her quality of life before this ugly disease but I bounced back really fast except for the few things I mentioned and would go thru it again knowing it saved my life and sorry she is having so much trouble and I don't have better advice.

Hygienist97

Can I ask what type of nausea

Can I ask what type of nausea medication do they have her on? There are many choices and some work better than others as everyone reacts differently to treatment as well as medication. Also dehydration plays a huge factor in how she might feel. Is she having chemotherapy as well? If so they can get her in for hydration my husbands doctor had to do this several times for him to rehydrate.My husband had chemotherapy and radiation and alot of troubles at the end with nausea and vomiting from radiation but he made it through, you can PM me as well if you like and I can try to give some tips that helped him.

Aanchal Kanodia

She is only 48 years old! We

She is only 48 years old! We are seriously thinking of stopping the treatment after 15 sessions are done. Maybe its doing more harm than good. 

corleone

Aanchal Kanodia said:

She is only 48 years old! We

She is only 48 years old! We are seriously thinking of stopping the treatment after 15 sessions are done. Maybe its doing more harm than good. 

Do NOT stop the treatment

Although it may actually get even worse, please remember it will start improving a few weeks after finishing treatment.

Her side effects are pretty much common, experienced by most of us.

Is she also on platinum-based chemotherapy (Cisplatin)? If only radiation, maybe the nausea is caused by an additional issue (some “bug” etc.) 

HOWEVER, the nausea/vomiting is not managed properly by the medical team. There are powerful anti-nausea medication (ask about Emend) that are incredibly effective.

 

Don’t give up! She is young, and all the reasons to continue fighting.

Aanchal Kanodia

No chemo for her. And we have

No chemo for her. And we have tried every kind of anti-nausea pills. You name it and we have tried it. It seems like my mom has to experience cumulative problems of everyone at once. She keeps saying that we are making her do this for our selfish needs and not giving her a quality life. Also, can you tell me how do you calculate the dosage according to the weight and age of a person? How much does did you get? I think she is getting around 200 grays each session. 

corleone

Aanchal Kanodia said:

No chemo for her. And we have

No chemo for her. And we have tried every kind of anti-nausea pills. You name it and we have tried it. It seems like my mom has to experience cumulative problems of everyone at once. She keeps saying that we are making her do this for our selfish needs and not giving her a quality life. Also, can you tell me how do you calculate the dosage according to the weight and age of a person? How much does did you get? I think she is getting around 200 grays each session. 

It's more like 2 Gy (greys)

It's more like 2 Gy (greys) per session, up to a total of 70 (35 sessions). That's what I had.

Emend was the most effective for nausea, I had 1 pill per day, for 3 days; but this was during chemo treatment.

If no chemo though, the team should check if she is well hydrated, and if no other gastric/intestinal issues

Sprint Car Dude

Sounds about right

This all sounds about normal for some of us. I found the mucous to be the cause of much of the nausea and vomiting. Maybe she can try some Magic Mouth Wash or Baking Soda swish and spits. She may have a mucositis going on as well.  It gets worse before it can get better. Also, she may have a constipation issue that is causing her symptoms. Good Luck.

Chicklette

Please do NOT stop treatment

Your mom is very young and her symptoms may be caused by something else, like a flu bug.  It’s hard to say.  If you stop treatment, chances are the cancer will spread and she will end up sick and in pain from the cancer itself instead of the treatment.  Treatment is very rough, but since this disease is highly curable, it’s well worth it in the long run.

Duggie88

Do Not Stop

I was ready to quit after 3 days,started on a Wewdnesday and told my wife Friday night that was it I wasn't going anymore. She called the doctor who put me on more drugs and told me all I have to do is show up and they will get me through it. I went through all 30 treatments it wasn't easy and once she is done she'll be glad she completed them. Make sure her doctors the trouble she is having and ask questions.

amr2662

Pain meds

I had bad nausea during the last few days and for weeks after radiation.  It turned out to be from the pain medicine I was on.  I had been on the medicine for several weeks without nausea but when my dose was increased the nausea started.  It took us a while to figure out the cause.  

 

rrmartins71

It gets better...

Dear Aanchal - I finished treatment 2 weeks ago, and you cannot believe how bad I felt at the stage your mom is now. Now the good news - I was told you keep getting worse until a few weeks after treatment, but that was not my case. In fact, my bottom was week 4. My throat started to heal, I felt less nausea, and other than constant dehydration that kept sending me back to the hospital, I started feeliing much better. At this moment I am completely recovered. I have not needed my peg tube for a couple of days, and other than lack of taste, I feel exactly how I felt before starting treatment. Good as new. I would not stop treatment for anything other than explicit medical orders. This too shall pass.

Aanchal Kanodia

Thanks for the support

Thanks for the support everyone. Since the vomiting and nausea wasn't stopping we had to do an endoscopy. We found out that her food pipe is damaged severely due to radiation. For the time being we had to pause the radiation  to recover. She is the hospital for last 4 days and can barely eat. Have ulcers all over the mouth thus preventing her to speak. I havent heard a word from my mom in last 3 days and we had only 12 radiations. She is doing her baking soda rinse too. Nothing seems to help

Aanchal Kanodia

rrmartins71 said:

It gets better...

Dear Aanchal - I finished treatment 2 weeks ago, and you cannot believe how bad I felt at the stage your mom is now. Now the good news - I was told you keep getting worse until a few weeks after treatment, but that was not my case. In fact, my bottom was week 4. My throat started to heal, I felt less nausea, and other than constant dehydration that kept sending me back to the hospital, I started feeliing much better. At this moment I am completely recovered. I have not needed my peg tube for a couple of days, and other than lack of taste, I feel exactly how I felt before starting treatment. Good as new. I would not stop treatment for anything other than explicit medical orders. This too shall pass.

Hi Martin,

Hi Martin,

Are you saying that you started to heal after week 4?

Darkdancer333

Aanchal Kanodia said:

Hi Martin,

Hi Martin,

Are you saying that you started to heal after week 4?

she hit her bottom at week 4

she hit her bottom at week 4

HopefulInNM

Hang In There

Please hang in there.  I was diagnosed with HPV+ left tonsil.  Had surgery, then rad/chemo.  I am so sorry that this has been so rough.  I hope that you all can take it a day at a time.  I am sending healing thoughts you way.  Hugs.

OKCnative

I'm the same age as your mom

I'm the same age as your mom and I went through virtually every symptom you posted above. Mine all came and went within about a two month period, starting around week 5 of treatment. I did 35 rads and 3 mega doses of chemo. I elected to do no surgery and no PEG tube or chemo port.

I never lost taste - but I wish I had, as the combination of metal taste and the mucous made me very nauseous. I never threw up and kept my urge to eat by doing regulated THC (marijuana). It's illegal in my home state, so I traveled out of state to get it. It was a miracle for me. No throwing up, I felt the urge to eat again and my anxiety lessened a lot. It even helped me to sleep. And all without the fear of addiction or the nasty side effects of opioids. I did chocolates and gummies when I could eat. When I couldn't, I did creams and patches (10mg at a time).

I did have a very bad cough for a short time - attributed to the very thick mucous. It was so bad I'd cough up bits of bloody throat tissue and I couldn't sleep. That is the only time I gladly took an opioid - Hydrocodone. I had it as a liquid and sipping it was the only thing to immediately stop my cough. I never took enough to feel any pain relief effects, but just a very small sip totally stopped my cough for hours.

Fatigue was rampant during my treatment. I simply had to remind myself it was just a side effect and to power through it. I'd make myself walk a couple of miles either outside or at the gym. I hated it, but it kept my muscles moving. There was probably 2 weeks I simply stayed in bed and let my body rest.

I also suffered neuropathy in my legs, feet and hands. Again, docs said that exercise would get rid of it - after two weeks of going to the gym, all symptoms went away.

I'm 6 months post treatment and back to 100% - minus some saliva. I take those ACT lozenges from Walmart and that's all I need for my dry mouth.

Treatment was horrible, but I always reminded myself it was temporary. For most people this is not a cancer where they tend to keep you sick in treatment until you succumb and die. This cancer has an initiation. If you can get through the initiation, you most likely have a very long and healthy life ahead of you.

donfoo

So tough but so necessary

Hi,

Treating oral cancer is one of the worst experiences. We all have been through what your mother is experiencing to some degree. A number of folks here were ready to throw in the towel but battled through the treatments as so should your mom. The best thing you can do is stay abreast of her daily condition and advocate for her with her medical staff. Something like nausea is very treatable. In her case, it seems there are complication. Hang in there, take each day one at a time. There were times when I had to just focus on making it one more hour. You both will get over the hump and things will improve. Good luck

Aanchal Kanodia

I really apprectaite all of

I really apprectaite all of you for giving your time. After a 10 day break we have started the treatment again. The radio oncologist says that he could get it done in 20, i don't know how he is doing that. So right now the plan is to get through 7 more. Hopefully we will get there this time with a little less trouble. 

SuzJ

I read your post

and thought - just described everyone here.

 

Maybe get your Mom to log into the board and ask us questions.

 

No point in stopping now, the hardest part is yet to come (sorry) but its a necessary evil. IT IS CURABLE - remind her of that!

Billie67

Aanchal Kanodia said:

I really apprectaite all of

I really apprectaite all of you for giving your time. After a 10 day break we have started the treatment again. The radio oncologist says that he could get it done in 20, i don't know how he is doing that. So right now the plan is to get through 7 more. Hopefully we will get there this time with a little less trouble. 

oh my dear, I was almost the

oh my dear, I was almost the same age (just a couple of years younger)when I went thru Rad. I had 49 treatments and it was HELL not going to lie! I ended up getting a PEG and it helped because it was my only way to get nutrition which also helped my depression. When youre hungry and in pain its horrible. The nutrition helped a lot. I also went every other day to the cath lab and got hydration, what a difference that made. Being dehydrated is so draining. Maybe see if that is an option for her?