But some patients reported missing face-to-face contact, study found
by Coinnoch on Thu Aug 18, 2016 07:57 PM
As I am now 3 weeks post treatment for a stage 4 HPV positive tumor in the base of my tongue, and, as I know from experience that the doctors will definitely not tell you everything, I thought I would write this post to help others who have been diagnosed know what to expect while going through treatment.
There will be variations in treatment but some things are guaranteed.
1. You may or may not have surgery. My tumor was inoperable so I cannot help in that area. If others reading this had surgery please feel free to comment.
2. You will definitely have radiation and there will be some severe side effects. I will cover these below.
3. You will probably have chemo. If you are HPV+ like me it will likely be Cisplatin. Again, side effects covered below.
PRE TREATMENT: Head and Neck Cancers are touchy beasts, requiring a lot of prep on the part of your medical team. My wife was diagnosed with breast cancer 5 years ago and was in treatment 9 days after diagnosis. This will not happen nearly as fast for you. There is a lot of prep that must be done. You will have many appointments and tests during this time. Expect 6 to 8 weeks from diagnosis until the start of treatment. The doctors are not trivializing your condition or ignoring you. It's just how it is. Use this time to prepare and unless you are overweight pack on some pounds and revel in your food. You're going to lose weight during treatment and you are going to completely lose your sense of taste for several months at least. I am not kidding. Everything will taste like cardboard.
TREATMENT SCHEDULE: Treatment will likely be 30 to 33 daily radiation treatments combined with chemo. For HPV+ the radiation is the magic bullet. Chemo will weaken the cancer but cannot kill it. The chemo should increase your survival odds by about 10%. You will have 2 to 3 rounds of chemo 3 weeks apart, or (less commonly) you will have daily low dose chemo.
RADIATION: Expect the following: You will be treated daily (weekdays only, of course). Each treatment will take about 10 minutes. Your throat and neck will begin to get sore within 1 to 3 weeks. You will be told to use a cream on the outside of your neck to keep it moisturized. Use it liberally starting several days before treatment. You will start to lose your sense of taste by the end of the first week and it will be completely gone by week 3 or 4. (Most people eventually recover about 80% of their sense of taste but this will take months post-treatment and possibly years). You will be given pain meds for sore throat and will likely end up on morphine for at least a few weeks. By the end of treatment you will have severe radiation burns on both the outside of your neck and in your throat. Very few people are still able to swallow at this point and some will end up with open sores on the outside requiring sterile dressings.
By the 2nd or 3rd week you will begin to develop what the doctors refer to as ‘thick, ropy, saliva’. Bwa Ha Ha Ha! It’s phlegm, folks. Your mouth will be full of phlegm. So much so that most people find themselves choking on it. It will get worse toward the end of treatment as the lining of your throat responds to radiation burns by producing even more phlegm, which you will definitely find yourself choking on. Most people find that they are awakened several times per night choking on phlegm and must get up to clear it. Some people vomit from it. If you are still eating when the phlegm production starts all food will have no taste but everything you put in your mouth will be like chewing a ball of phlegm - as disgusting as it sounds. This will continue until several weeks to a few months after treatment. In addition, the inside of your mouth will be numb during this time.
You will likely go through a period starting in late treatment where you must sleep inclined or even sitting straight up (yep, pretty uncomfortable and you will not get a good rest but it may be the only way to sleep without choking). A vaporizer may help.
Eventually the phlegm production will ease in favor of dry mouth. You will need to learn to sleep with your mouth closed (some people have to tape it closed) or your mouth will dry out within minutes. Eating will require having some sort of fluid at hand to wash food down with. This will also continue for many months and many people find that they will suffer from some dry mouth for the rest of their lives although for most it eventually becomes tolerable.
The end of treatment does not mean recovery starts, either. Expect the side effects of radiation to worsen for two weeks following the end of treatment before it starts to get better.
On a minor note, if you are a guy, your beard will stop growing everywhere that you've received radiation. It will come back in time.
CHEMO: Expect the following: Your first chemo will be on day one or two of treatment. If Cisplatin, expect severe nausea even with the meds they will give you. Of the hundred or so different chemo drugs, Cisplatin is one of the nastiest in terms of side effects. The nausea will likely not start until the next day but it will be very bad when it does. Nausea will last for one to three weeks on each treatment depending on how sensitive you are to it (one week is normal but I was very sensitive so for me it was almost 3 weeks). Eat as much as you can between the end of nausea and the next chemo treatment. You will need all the calories you can get. Your hair will thin but not fall out. You may also experience severe fatigue and find that you are sleeping A LOT, especially for the first few days post chemo.
GENERAL TREATMENT NOTES: You may have a feeding tube put in anywhere from week 3 to week 5, which is a small tube that snakes through your nose and down in to your stomach so you can have liquid nutrition. This will happen if you can no longer eat, which is very common. You will lose weight, possibly a LOT of weight (I dropped 30 lbs. and I was very fit and very lean when I started so that was 30 lbs. of solid muscle). Unless you are overweight you should eat as much as you can prior to treatment. If you can pack on 10 lbs, do so. You'll lose it again, I promise.
You will experience fatigue, possibly extreme. Give up all ideas that you will continue to work or have a normal life while going through treatment. This will not happen. You will be sick, weak and tired, and this will last for months.
DEPRESSION, the most common side effect: Also, the most common side effect of throat cancer treatment is depression. Virtually all patients will suffer from at least some depression, and in some cases it will be severe. Be prepared for this. Let your friends and family know and make sure they understand you will be experiencing some very low moments. Suicidal thoughts are normal (although thankfully I've never heard of anyone acting on them).
If you are married, be sure your spouse is prepared for being a care giver and for providing emotional support (have them read this post). If you do not have a spouse or live-in caregiver you must arrange in advance for someone to check on you regularly. You may experience times when the only thing you have energy for is getting up long enough to go to the bathroom. You will not be fixing food for yourself or fetching a drink from the fridge during these periods. Also, remember the depression and be sure you have someone to talk to. You will need this support.
Doctors and nurses will be kind and supportive but remember that they have never experienced what you are about to go through. You will at times find yourself frustrated as they simply don't understand the level of discomfort, pain and distress you are feeling and they will be ‘preaching’ at you to do certain things. Nod politely and then do whatever works for you.
There will be times, especially during the early weeks of treatment that you will wonder if the torture is ever going to end. You will find yourself grimly hanging on and simply enduring the suffering that each day brings. This is the cost of survival. Be prepared for it as for most of us, this will be by far the worst thing we have ever, or will ever, experience. It's that bad. Really.
I have a good friend who is a radiation tech at the cancer center here. He has treated all types of cancers for years. While there are certainly other cancers with lower survival odds, he told me that of all the cancers you can get, throat cancer is the one he would least want because the treatment is the roughest of any kind of cancer.
Please note that while this post is based upon my own personal experience and a lot of research in to what other patients have gone through, everyone responds differently. This post is a guideline. Your personal experience my differ somewhat but in general the above is what you will go through.
Finally, I have set this thread to notify me when others respond. If you have questions, please post them and I'll get back to you as soon as I can.
by NDB1979 on Fri Jan 06, 2017 01:39 AM
by Coinnoch on Mon Jan 09, 2017 04:49 PM
I'm now almost 6 months post treatment. Other than a little fatigue I'm physically recovered and have been able to work a full day since October. I've gained back most of the weight I lost. There are still mouth issues, with very dry mouth and still little sense of taste. These are improving but very, very slowly.
I hope things work out for you. Lumps are not always cancer.
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
We care about your feedback. Let us know how we can improve your CancerCompass experience.