loads of questions

Kskokko

Kskokko said:

kskokko update

If you go to my original post, you will see I had 6 cisplatin and 32 rad trreatments after the rad tonsillectomey and neck dissection.

I had my last treatment on May 10 and have since been recovering from the trreatments.   When treatment is over, you are far from over, since the treatments do so much damage to the body   

Here's the short tlist and where I am today

I will have my follow-up PET scan on 7/25.   Until then they keep the chemo port in as a constant reminder

I was able to maintain my weight during treatment.    I so hated the gastric tube that I would not use it, so kept pouring the calories in.

THe gastric port was removed on May 22.   May it burn in Hell.

Taste

I had zero taste.   Food had temp and texture.   Since completing treatment some taste has returned and I was told that most would return within three months.   I have about a month to go.    I am able to eat almoast anything, but starches remain a challenge, and full taste has not returned.   Saliva volume was very low and what was there was thick so I would choke on it if I did not have water with me at all times.   Saliva is better.

Nausea

It was bad for a few weeks, but they found a combination of meds that worked.   Took several tries. As I reintroduce Real Food, I have bouts of acid reflux.   Since starting on Real Food again, I have lost five pounds

 

Fatigue

I tire so easily.    I am forcing myself to go to the gym every day and go to yoga.   I need to push myself and regain my strength and stamina.    I am not capable of much, but I am getting some cardio and some weight bearing exercise.  I don't see any other way of pushing past the fatigue.

Peripheral Neuropathy

THis started about the third chemo treatment and was stable until about two months after finishing treatment.    It went from mild to moderate.  It is not painful, but my hands and feet are numb and sore, it it sometimes moves up my arms, across my chestg and back and up my legs.    THe exercise is probably making the neuropathy worse in the short term.    My onc team thinks this will get better with time.   I have been referred to specialty PT for post cancer treatment.   

Lymphedema

THe neck tissue still feels like a steel belted radial despite daily stretching and massage.   The lymphedema has gotton worse recently, so this too goes to specialty PT.   Because the neck tissue is so hard, my tongue pulls to the left and I do daily tongue exercises.

Hearing damage. 

THe cisplatin damaged my hearing    I lost the range above 4000 Hz.   Also, and this is odd, I hear all women lisping.    THis has been confirmed by the audiologist and speech pathologist.    I thought my wife had developed a lisp until the speech pathologist explained this was part of the damage.

THis has been a hard road.

 

 

 

THe Onc team suggested glutamine for the neuropathy, but after three weeks it is no better.   I cannot find good med evidence that it works

THey also suggested sodium selenite for the lymphedema.   THere seems to be some evidence in the med literature,   I just took my first dose

Kskokko

PT scan update

after six month, two surgeries, six cisplatin infusions, and thirty two radiation treatment, the pt scan says I am cancer free

caregiver wife

That is great news!!

Klingels

Congratulations!

I am the caregiver, and we are seeing many of the same symptoms. This is a hard road. Congratulations on a clear Petscan.