Really great summary and fantasitc advice!!
You are so right - the post-treatment 2 months is the worst, extending out to 6 months which is when I could finally start to swallow soft solids and get my PEG removed.
In terms of distraction, I'm one of those sickos who like to immerse myself in my work and as an engineer I was fortunate to have plenty of desk top tasks to do working from home. Despite having full income protection insurance cover I kept in contact with work as much as I was capable, dropping down to about 1/3 of regular hours at its worst (other than a week in hospital 2 months after treatment due to a secondary throat infection).
I couldn't attend to site work due to the high level of opiates in my system and I always had a colleague peer review my reports in case chemo-brain effected the work. I also gave my workmates licence to tell me to pack it in if I was getting too out of (mental) shape - participating in teleconferences regularly really helped me maintain some social contact and diversify my thoughts/conversations away from health issues. If you and your doctor think you're up to maintaining some work contact I wholly endorse it.
I'm now at treatment+14 months. All scans are clear other than a little lymph node under my collar bone that has hardened and grown - so not worry free but almost back to full strenght and fitness. Dry mouth and other swallowing issues take the edge of meal time enjoyment but its not so bad (compared to the option of no treatment).
One other thing I'd really like to reinforce from earlier posts - take on any trials you are offered and able to participate in!! I signed up to 3 including immunotherapy (Ketruda / pembrolizimab) - the treatment aftercare tail goes for a lot longer and you are offered a lot more support by the trial team long after the regular cancer care services taper off. If you are fortunate to get the active drug it can also improve your outcomes - a course of Pembro treatment costs nearly $180k if you fund it yourself and you might get it for free - early indications are that it adds a lot of percentage points to your 5-year survival probability.
Fight hard and keep as well as you can.
I am a reluctant member of this little club as from October last year. I noticed a swollen Cervial lymphnode on the left side of my neck mid October, I am a 54 yr old Male.
I was referred for an ultrsound of said lymphnode and biospy in November and was found to have Squamous Cell Carcinoma.
ENT believed it had started in left Tonsil and performed a partial biopsy of left Tonsil and Tongue. I then had a Petscan which showed the Tumor mass in Cervical node and effecting the node directly under it as well and Cancer starting to affect Node on right side of neck.
This is where it gets tricky, petscan only showed one tiny dot in left PalatineTonsil so now they aren't sure where it started. Tonsil biopsy showed Tonsil clear!
Anyway's started Tomo Radiotherapy last week on 29th Janaury as well as Carboplatin. I had to have two sessions of radiation on Friday as the Monday before was a public Holiday.
I will be having 35 session of radiotherapy as well as weekly carboplatin.
So a week in and my mouth is already beccoming dry. I am losing my taste, I have a slight stinging sensation in my mouth. I have had some terrible acid reflux which I rarely if ever had before and unsure if it's the radiation or Chemo causing this?
Due to my hearing they decided carboplatin would be best. I would argue that point though my god, the carboplatin gives me chronic constipation.
Some helpful tips posted from you guys so I will be putting those to use in an effort to make things as comfortable as possible.
One week down six to go. Wishing you all the best in your continued recovery and good health.
You've got a tough couple of months ahead but fight hard, follow their advise and you’ll get through okay.
Your doctor can prescribe Somac (pantoprazole) to control the reflux, you definitely want it sorted before the mucositis starts to flare up in a week or two.
Dont be afraid to double up on coloxyl to ease the constipation, another one to resolve before they put you on opiates for throat pain as they also bind you up.
I had Cisplatin so can’t offer much advice on your chemo drug.
Wishing you an easy treatment and a good outcome
Thanks for the advice, I'll look into Somac when I see doc next week. Will also give Coloxyl a go as well.
I had bloodwork done on Friday so should know results tomorrow when I go in for second round of chemo and into second week of Radiation. I do have a cold sore coming up just under my bottom lip so will mention that to them as well tomorrow. Don't know if that will affect treatment and if they will give me anything for it.
Reading what you guys have posted I am expecting things to get considerably worse in regards to side effects. I am already complaining about losing my taste lol and the mouth getting dryer.
Crap (pun not intended), I forgot all about the constipation.
If anything, take that as a good sign -- it's traumatic, but if you power through, once you're out the other side that aspect drifts into the past pretty quickly. (Kind of like pregnancy and giving birth, otherwise most women probably wouldn't willingly do it more than once).
Let me give a DO NOT READ IF SQUEAMISH warning here, OK ?
The constipation was a profound problem, and I made the mistake of ignoring the constipation meds until I was already suffering a complaint, where it will definitely have a prophylactic effect in softening the stools and preventing or mitigating the problem.
If you let it go, well .. mileage may vary, but for me it was terrible. TERRIBLE.
It feels like someone inserted a foreign object into your basement, and it's too large and wrongly shaped for you to squeeze it out in the normal fashion.
I literally tore my sphincter and once it healed a bit, tore it again. At one stage, I actually had to kind of reach up inside myself in order to get rid of an extremely hard - like .. brick hard .. piece of excreta.
Just so you can have a sense of severity, after clearing that particular instance, I looked down and the toilet bowl didn't just have splashes of blood, it was literally red water, I splashed down a good cupfull of blood. It was horrible, a fair bit painful.
Take the meds even if youre not suffering constipation .. I had cisplatin, not carboplatin, but if they say it causes constipation .. yeah mate, suggest do something preventative.
If you don't want to touch meds without there being an active problem - then .. if you can still take drink by mouth, go with prune juice, anything and everything that will soften a stool. Drink massive amounts of water, etc.
I didn't have to have stitches, but my doc did order a colonoscopy as there was still bleeding several months after treatment .. from the injury healing and then re-opening itself.
I should have taken the meds more seriously and used them even though I wasn't suffering constipation. Once I had a problem, it was a bit too late, locking the barn door after the horse already bolted...
I really feel for you....it is such a devastating diagnosis and the treatment is no better. I am sure you have scoured this thread for all the infos on what may come your way in the next month or two. My advice is to just ride with each step of it....deal with things as they happen and focus on that. Yes the side effects are immense and there is no quick fix for the after math either but do try to stay positive. Remember we are the "lucky" ones that can receive treatment and our diagnosis is treatable and curable!
For the constipation I also had the same chemo as you....and unfortunately suffered the same. I can only advise you to keep up your liquids as captain australi has advised and try eating different things that help. I found figs really helped fresh ones, dates, prunes. I only had one round of chemo as I refused the other two due to just not being able to do rad and chemo....for me rad was my main treatment with chemo as an extra precautionary approach. Doing more chemo would definately have affected my ability to continue rad so it was decided to leave it.
Just take one day and one week at a time....each day done is another one you don't need to ever do again!
Hi Captain Australi
I saw my Chemo Dr. this morning after Rad sesssion. I mentioned the constipation to Her, She advised "Water" Drink plenty of water.
She told me to take two Coloxl+sena in mornings and two at night. Also Two sachets of Movicol morning night.
Since Chemo on Monday I have a new side effect, Hicupping! It can last for hours and even wake me It has been driving me insane... so today She also prescribed Largactil 10 mg take one three times a day and see how that goes.
I knew and expected side effects in my mouth from what I have read here in this thread and elswhere but that went down hill quick for Me. I wasn't expecting my mouth to deteriorate so quickly!
I have a burning sensation all inside mouth and throat. Dry mouth, taste is fading fast. Everything is beginning to taste like cardboard. I am now starting to get thickish mucus particularly when trying to sleep at night.
My Radiation Oncologist prescribed Mucosoothe. This, foul tasting thick pink stuff is supposed to numb your mouth and throat before you eat. It helps but does not really numb it that much. I'm still forcing myself to eat solid foods and each time I swallow it's like swallowing barbed wire. I found it helps it eat a Paddle pop before main meal lol, that numbs throat better.
Oncologist also prescribed Endone, take one three times a day. Next week He says He will give Me fentanyl Patches.
I'm also using the mouth wash they gave me at hospital rinsing 4 times a day. I'll be happy if I can get the constipation under control and get rid of these damn hiccups.
Hope this see's you doing well Mate.
I'd agree with you abut the diagnoses and treatment. I have done some research into this and what I'm up against, still, reading about it is one thing, going through it is entirely different as you know.
Thank you for the advice re constipation, to be honest I'd forgotten all about prunes. I must get some and add them to my diet. I will try all as I have posted above as well.
I wasn't to thrilled about the Chemo to be honest myself. They did tell Me that the Radiation would be the main the treatment and that I could probably forego the Chemo however, Since they cannot find the primary or aren't sure where it is, they have advised that chemo is benificial to my treatment.
I think from memory my TNM was
T 0 since they can't locate primary
N 2 as both lymph nodes either sides of neck affected.
M O Since it has not metastasized out of the head neck area...well, not yet!
I am booked in for Pet Scan on 19th to see how treatment is going and hopefully it's going all to plan.
Wishing you all the best
I had forgotten all about the things I used to get through treatment but you describing the burning in the mouth and the pain when eating brings back memories of dark days!.....What came to my mind was the DIFFLAME spray.....I used this every time I ate (when I could still eat) then later before drinking the shakes when I couldn't eat anymore.
You can find it at chemist warehouse or ask your oncologist to prescribe it for you as it can get expensive if it works for you, you will be using it a lot. I found it extremely helpful in keeping the intake up. I didn't get a peg so was able to get liquids down for the entire treatment, saying that by the end it was very minimal and after treatment nothing for a few days....just water....even that was so hard.
Do you have a peg? That can really ease the pain involved in eating and drinking as it does get harder and ramps up pretty quickly by the end. Do you have a good support network? family etc. It really helps to have that support to keep your morale high and positive despite the terrible face of all this.
I highly recommend the fentanyl patch.....it really really helped me ease the pain....I used them even up until a month out of treatment for pain.
With chemo I also had an unknown primary but it had only affected one lymph node which they dessected. Everyone has there own plan from oncology and you don't want to jeopardise any margins of being cured. I know it is a scarey place to be at the moment but keeping reaching out and staying positive.....it will pass and hopefully soon you will look back as we do and have forgotten what drugs we took to get through it all!
All the best for another week down and a step closer to being out of treatment and towards recovery.
We are all feeling you Maurie!
Hi everyone, it's been awhile since I posted anything. I am now five years post treatment so clinic visits have finished along with dental checks.
My experience was on my tongue with one lymph node in richt side of neck affected so only had radiation treatment. I remember first few weeks were okay and then it hit me with avengence.
They gave me xylocaine which is a thick pink liquid that you dilute with water and rinse about five mins before eating or drinking. It is a liquid topical aenasetic (excuse spelling) and this worked a little bit. Tried the difflam as well but four weeks in and nothing worked, could not even drink much water. Just before they were going to put a peg in I was finally able to manage enough ensure to slow the weight loss.
Mucosis was really bad and I still have a mild form even today. Without saliva you cannot cough up phlegm.
As the removed a loarge prtion of my tongue and replaced it with a flap from my forearm my taste buds have only partially returned. So much for they will be okay within a few years. I had liquid oxycondin, morpine and duregisic patches to help with the pain. I got off the patches about six months after treatment as I insisted I needed to stop them.
These days eating out is a test as without the saliva you are limited in what you can eat. Try getting people to understand that you cannot eat sandwiches, it is fun. My family have been a great support and all keep in instant gravy for when I am having a meal at their place. Every thing is with a side order of gravy or white sauce. Sweets are with cream or custard.
Some days my tongue doesn't want to co-operate and I have trouble with some words, the worst being anything starting with W.
It is a long road, but eventually you will find your normal. It has taken me this five years but now things have settled into a pattern and I just plod along and ride the bad days as the good far outnumbered them.
I am for ever grateful to my doctors who acted so quickly in the begining and for their continued support along the way. The main one is having a very good family GP who keeps a very close eye on me.
The other plus for me was the weight loss, 60kgs all up, as I was morbidly obese before all this happened and now I am just a bit overweight. So look for a silver lining and focus on that.
Good luck to everyone.
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