57 year old Tradie: Trying to get past side affects of Chemo/Radiation/Surgery

[Boony]

Hi,

Last year I had Tonsil  cancer stage 2,  I had one lymph node in my neck that was infected by this nasty beast. The tonsil was robotically removed and lymph surgically removed I also had radiation chemotherapy (cisplatin) sessions after it. January this year I was blessed and given the all clear.

My tongue took a hammering, lose of feeling on one side and inflammation that causes me hardship in swallowing and talking. I eat various textures of foods but must be well sauced or gravied. Not so long ago I use to get bad tongue burning sensations, that seems to have abated but I do not want to say it’s gone yet.

Is there anyone out there that has got past all this? Or if you are suffering the same type of effects how are you managing it.

[Katekat]

Hi @Boony!

How are you doing today?

@CaptainAustrali, is this similar to what you experienced? Just wondering if you can offer Boony some advice 

[CaptainAustrali]

Hullo Boonie

Mate, I didn't have surgery, so I don't think my experience directly overlaps with yours, sounds like nerve damage to the tongue is one of your major problems.

I did have a similar disease profile, and in the Treatments and Side Effects have a long thread with a bunch of comments and advice from myself and others (regarding that specific tonsillar cancer, combined Cisplatin chemoradiation).

Stuff like mucositis, saliva, loss of taste, radiation induced thyroid damage, nerve damage to the neck (spasms), heh, cancer is the gift that keeps giving, eh ?

Anyway, just linking in case any of it's useful, but that tongue damage stuff sounds pretty tough, I didn't experience that.

https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Your-experience-with-sid...

[CaptainAustrali]

(sorry, "Boony" - by the time I was writing my reply, I could no longer see the history to check the spelling, so took a guess at "Boonie", humblest apologies)

[obliviousdocs]

Hi Boony, You're brave to have gone through that and you need to know it. Regarding side effects, I have similar nerve damage. Treatments are harsh. Breathing is important. Deep breathing. There are websites on this.

To treat your damage, you can start taking a widely available herb called Withania Somnifera. In India this is called Ashwaganda and for a more pure form you can get this from an Indian grocery store for 1/4 of the price Chemists or health food stores sell it for. Withania is the same ingredient. It's the same thing.  You don't need much. I just take 250 mg a day (1 tablet). That's a low dose. You need to stay away from sugar because this feeds cancer cells. An alkaline diet helps a lot. You probably get enough exercise from your work being a tradie. Look up "cytokines" and inflammation. Look up cancer and inflammation.

Cancer is a personal journey and although treatments are not tailored to us (but rather a protocol of 2-4 different types of chemicals at any one time) we are human beings first. Some doctors forget we are somebody's brother, or sister or mother or father. It affects everyone too especially children. They don't like to see their parents sick. They can get hurt psychologically as a result.

If you believe in a God, this can help. I don't know how in a scientific sense, but it can as can a walk in a forest breathing in oxygen. Stress is bad because it produces cortisol (sugar), while praying and meditating has a relaxation effect on the body, so learn to have a lifestyle that allows you to nurture yourself as well as those around you.

God bless.

[VinnieS1956]

Hi mate . I had the same treatment and i am 10 weeks post . Been back at work post 2 weeks so i got through reasonably well . Dry mouth is possibly the worst of it but i bought some snoring velcro head straps and i now sleep ok. Taste buds took a hammering but i am getting a lot of my usual buds back as time goes by . Worst of it for me is i love a wine and a beer and i struggle at the moment on these . I am running soft sand once a week so being and staying fit is a must . Its been huge in my recovery . Hang in there mate as it will get better . Vinnie 

[Michelle22]

Hi,

i am 3 weeks, nearly 4 weeks out of 7 weeks treatment for radiation for oral cancer, stage 5. I am very tired and sleeping a lot. I am still being  fed by a PEG tube, but am struggling to reintroduce Food beyond the ‘slushie’ texture.  I too have pain in the mouth/throat. I am looking for a menu to plan to reintroduce food with texture.  Can anyone help?

[MarkM]

I'm 53.  I had tonsil cancer.  Left one to be exact.  After the scans, they found it in a few of my nech lymphnodes.  Needless to say, I was horrified.  I did exactly what the docs said to do and hoped for the best. As of today I am 147 days removed from my last treatment.  (The side effects are not worth mentioning to this crowd.  We all know.)  My G-Tube was taken out back in October.  Eating was a struggle, mouth sores were horrible, but I was done with the tube.  Hell or high water, I was going to survive without the tube.  After a certain point, I just developed an attitued of "Go F#@K yourself cancer".  I just felt done with the tube, the drugs, and the entire situation.  Thankfully I have a very supportive family and a great network of friends

Good luck to all who are stricken with this horrible disease.  

[MarkM]

Hang in there. It's a tough process. It's not easy by any means. The doctors all say, " it takes time". They are right, but they never define time. It takes months. I am 147 days past radiation, I still have some side effects and I am now experiencing late effects. Keep fighting!

[MarkM]

I had stage 1 tonsil cancer in May of 2018. I didn't have surgery, but I did have the 3 chemo/ 35 radiation standard plan that they give. My side effects are nothing like yours. I am 147 days past radiation. My dry mouth is getting better. My taste has returned for the most part. Some things still don't taste right. I do have constant ringing in my ears, and I am now experiencing neck pain and stiffness.