Anyone like me?
Brian
Comments
-
Experience
Brian,
Everybody is different. That's the thing to remember. What happens to you may be totally different than what happened to me. Having said that, here goes.....
I went through what you're facing starting last April. Surgery, 33 rads and 3 rounds of cisplatin. I wasn't in nearly as good of shape as you are.
The surgery was the easiest part of the procedure for me. I healed up really quickly.
Radiation with the chemo was taxing. Fatigue was a real issue for me. So was nausea. The second round of chemo caused me to be laid up in the hospital for four days during Memorial Day weekend last year. I couldn't hold anything down and no medication could overcome the nausea, but it passed as the chemo cleared my system.
My neck tanned, darkened and peeled from the radiation. However, my throat never got sore. I could always swallow. My mouth never really ever dried out completely. I didn't get mouth sores, didn't need the magic mouthwash and never really had any pain that required medication.
Nine months out and my saliva function is still improving. It is not the same as before, but I don't need water to eat anything. My taste is improving, but it is still not quite like it was before treatment. I guess the amifostine that I was able to tolerate was effective.
That was me. Everyone is different, but no one has it easy.
Good luck!
Rush0 -
Type of cancerHondo said:Hi Brian
I need to know what type of Cancer do you have, and don’t worry about the treatment there is life after Cancer and good life too, I am a 9 year survivor of NPC
All the best to you and welcome to CSN
Hondo
Hey Hondo,
After three misdiagnosis and after an eight hour surgery, I was diagnosed with hpv positive squamous cell carcinoma. It started in my rt tonsil which was removed a week and a half ago. I worry most about the long term salivary gland issues and the consequential health problems, not to mention I enjoy kissing my wife.
I'd love to hear your story,
Brian0 -
Rushrush1958 said:Experience
Brian,
Everybody is different. That's the thing to remember. What happens to you may be totally different than what happened to me. Having said that, here goes.....
I went through what you're facing starting last April. Surgery, 33 rads and 3 rounds of cisplatin. I wasn't in nearly as good of shape as you are.
The surgery was the easiest part of the procedure for me. I healed up really quickly.
Radiation with the chemo was taxing. Fatigue was a real issue for me. So was nausea. The second round of chemo caused me to be laid up in the hospital for four days during Memorial Day weekend last year. I couldn't hold anything down and no medication could overcome the nausea, but it passed as the chemo cleared my system.
My neck tanned, darkened and peeled from the radiation. However, my throat never got sore. I could always swallow. My mouth never really ever dried out completely. I didn't get mouth sores, didn't need the magic mouthwash and never really had any pain that required medication.
Nine months out and my saliva function is still improving. It is not the same as before, but I don't need water to eat anything. My taste is improving, but it is still not quite like it was before treatment. I guess the amifostine that I was able to tolerate was effective.
That was me. Everyone is different, but no one has it easy.
Good luck!
Rush
Thank you for replying. So are you cancer free? Do you have any other long term effects to note?
Brian0 -
Long TermBkanter72 said:Rush
Thank you for replying. So are you cancer free? Do you have any other long term effects to note?
Brian
Brian,
My scans have been clear thus far. My next set of tests is scheduled in two weeks. CT scan, blood work and evaluation.
My thyroid function is fine so far, but my blood counts are low. I've been told that is normal for chemotherapy recovery.
Long term effects? I'm in better physical condition, have more energy and am in greater overall health than I have been in over a decade.
The sense of "sweet" is not nearly as good as it once was, but I can eat habanero peppers now and never flinch.
Rush0 -
Rushrush1958 said:Long Term
Brian,
My scans have been clear thus far. My next set of tests is scheduled in two weeks. CT scan, blood work and evaluation.
My thyroid function is fine so far, but my blood counts are low. I've been told that is normal for chemotherapy recovery.
Long term effects? I'm in better physical condition, have more energy and am in greater overall health than I have been in over a decade.
The sense of "sweet" is not nearly as good as it once was, but I can eat habanero peppers now and never flinch.
Rush
That's good stuff! I can't tell you how much I appreciate your reply.
Good luck in two weeks, Rush. Oh, and I'd recommend P90X if you want to take that physical condition to the next level.
Brian0 -
BrianBkanter72 said:Rush
That's good stuff! I can't tell you how much I appreciate your reply.
Good luck in two weeks, Rush. Oh, and I'd recommend P90X if you want to take that physical condition to the next level.
Brian
I was 54, so your age and physical condition will work in your favor, and that includes your recovery. The worst of times last only a short while, and the side-effects are manageable, and diminish in time. You'll be okay.
kcass0 -
Similar
Hey Brian,
I was 38 when I was diagnosed and started treatment. 39 now. I'm an outdoor guide and personal trainer by profession and have eaten organic for the last 10 years. I received Cisplatin/Gemzar+ 35 rads to the head and neck for nasopharyngeal cancer with distant mets to bone. I finished treatment 90 days ago today. I tolerated all the treatments well and exercised daily through treatment. Lingering side effects are constant ringing in ears from Cisplatin, L'hermittes syndrome from rads and about 30% normal saliva production. There were quite a few more during treament that cleared up pretty quick and never really got all that bad; except the fatigue. Fatigue was overwhelming. Lots of stomach weirdness too. Had the PEG for 4 months, used it for 2 due to sores on tongue and throat. Doc says the thyroid will quit working at some point in the next 10 years and that meds correct the problems easily.
No question; treatment sucked. Life is good this side of treatment though. I have no regrets about the treatment I chose and received.
Welcome to the board. You'll get through treatment well most likely. Young and in shape is an advantage for sure. Let us know how it goes for you and feel free to ask as many questions as you need.
Bob0 -
Hello
Brian,
I was 44 at diagnosis, did not normally eat a healthy diet, and did not normally exercise. My doctors thought my body "would tolerate treatment", so after a tonsillectomy and open biopsies, I did induction chemo followed by chemo radiation. I had a feeding tube installed. Nine months later (last December), I had a modified radical neck dissection. Treatment, as all here will attest, is doable. It was not as hard as I had imagined it would be. I had some rough days during induction chemo (was hospitalized for nine days during my second round of chemo, but honestly felt pretty good the day I was admitted for neutropenic fevers - when your immune system is wiped out, you don't feel bad when you have a fever). During induction chemo, I had a few side effects - almost all were very short term. Mouth sores were the worst - I think that I had them for almost two weeks during one round of induction chemo - normally they didn't last that long at all. During chemo-rads, I had mostly reduced side effects - mouth sores and throat/mouth radiation were by far the only bothersome side effects I had at that time that started during chemo rads (some issues, like neuropathy, started during induction chemo, and lasted during chemo radiation, but lessened once I was only taking Cisplatin instead of the three drugs I had for induction). I believe the most intense pain I had was after the tonsillectomy - pain from rads and mouth sores lasted longer, but tonsillectomy was higher on the pain scale, I think.
I was able to care for myself throughout treatment - cooking, cleaning up, bathing, doing tube feedings when I couldn't eat, driving myself to and from chemo rads, etc. I did have days when I didn't feel like doing it, but I was able to, and did it. I quickly regained my sense of taste, and not long after treatment, was able to eat lots of things. (I was able to do amifostine injections for the first part of my chemo radiation - that may have helped me on the saliva/taste front).
DRINK water - and get in good quality calories whenever you can. I did try to exercise during treatment (nothing like what you're doing, but more than I did prior to diagnosis), and was able and willing to do some moving most days. Take your nausea meds on schedule - don't wait until you start to feel sick. Watch goofy tv shows. If you have a caregiver, that'd be a definate plus, but I recommend you do as much as you can for yourself. Many folks need their caregiver - you may be lucky like me, and be able to take care of yourself.
At this point, I am more "normal" than not. I can eat almost all foods (some foods require lots of water, some foods - like chewy meats - just aren't on my menu at this time). I believe I have sufficient saliva to kiss (hmmm - maybe need to find volunteers to help me test my theory). If not - hello handy water bottle. I can go for quite a while without drinking, especially if I'm chewing gum, but still need quite a bit to drink when I eat. I have noticed, though, that sore throats are more frequent, and more bothersome now.
Wow - what a juicy post - sorry for being so long-winded. You can surely do this - your family, your docs and the folks on this site will be a great help as you travel down the treatment path. Do well.0 -
Pretty much like you...Pam M said:Hello
Brian,
I was 44 at diagnosis, did not normally eat a healthy diet, and did not normally exercise. My doctors thought my body "would tolerate treatment", so after a tonsillectomy and open biopsies, I did induction chemo followed by chemo radiation. I had a feeding tube installed. Nine months later (last December), I had a modified radical neck dissection. Treatment, as all here will attest, is doable. It was not as hard as I had imagined it would be. I had some rough days during induction chemo (was hospitalized for nine days during my second round of chemo, but honestly felt pretty good the day I was admitted for neutropenic fevers - when your immune system is wiped out, you don't feel bad when you have a fever). During induction chemo, I had a few side effects - almost all were very short term. Mouth sores were the worst - I think that I had them for almost two weeks during one round of induction chemo - normally they didn't last that long at all. During chemo-rads, I had mostly reduced side effects - mouth sores and throat/mouth radiation were by far the only bothersome side effects I had at that time that started during chemo rads (some issues, like neuropathy, started during induction chemo, and lasted during chemo radiation, but lessened once I was only taking Cisplatin instead of the three drugs I had for induction). I believe the most intense pain I had was after the tonsillectomy - pain from rads and mouth sores lasted longer, but tonsillectomy was higher on the pain scale, I think.
I was able to care for myself throughout treatment - cooking, cleaning up, bathing, doing tube feedings when I couldn't eat, driving myself to and from chemo rads, etc. I did have days when I didn't feel like doing it, but I was able to, and did it. I quickly regained my sense of taste, and not long after treatment, was able to eat lots of things. (I was able to do amifostine injections for the first part of my chemo radiation - that may have helped me on the saliva/taste front).
DRINK water - and get in good quality calories whenever you can. I did try to exercise during treatment (nothing like what you're doing, but more than I did prior to diagnosis), and was able and willing to do some moving most days. Take your nausea meds on schedule - don't wait until you start to feel sick. Watch goofy tv shows. If you have a caregiver, that'd be a definate plus, but I recommend you do as much as you can for yourself. Many folks need their caregiver - you may be lucky like me, and be able to take care of yourself.
At this point, I am more "normal" than not. I can eat almost all foods (some foods require lots of water, some foods - like chewy meats - just aren't on my menu at this time). I believe I have sufficient saliva to kiss (hmmm - maybe need to find volunteers to help me test my theory). If not - hello handy water bottle. I can go for quite a while without drinking, especially if I'm chewing gum, but still need quite a bit to drink when I eat. I have noticed, though, that sore throats are more frequent, and more bothersome now.
Wow - what a juicy post - sorry for being so long-winded. You can surely do this - your family, your docs and the folks on this site will be a great help as you travel down the treatment path. Do well.
...except Mark was 53 at the time of diagnosis. April 2010 Mark waas diagnosed with SCC left tonsil Stage IV, HPV+. He underwent surgery to remove tonsil and surrounding areas, radical neck dissection (all lymph nodes and neck muscle on the left side), and 6 weeks of chemo and raidation. He started on cisplatin, but was taken off after the first dose due to hearing loss and he continued after that with weekly carboplatin and taxol.
You see him in the picture to the left, that was less than 1 month following treatment. He was at my dad's 75th birthday celebration eating chicken wings.
As said above, everybody's experience is different. Mark had an excellent group of doctors in Philly. I will be grateful to them until my final day. I think they and the hospital he was treated at made a huge difference.
Lasting side effects: dry mouth, worse at night. Neck tightness and spasms. Cosmetically he is missing part of his neck. His quality of life is very good. He eats pretty much what he wants, spicey is not so good. Chicken sometimes can be too dry for him. Other than that, no real eating restrictions. He has resumed his normal physical activities. Skied in Canada over Christmas, goes to the gym, swims, rides bike, walks everywhere.
Brian, I am sorry you are here. But if you have the diagnosis, it is a good place to get info and support. There is always someone who knows exactly what you are going through. I could not have cared for Mark the way I did without this amazing group of people.
Journey on here with us. You are not alone.
Kim0 -
Sounds like you could be my twin!
Hi Brian, I had got diagnosed right about the same time last year. Same age, right tonsil, right lymphnode, hpv+. I'm sad that you had to join this fraternity; but happy you reached out for support. Lots of wonderful people here willing to lend a keyboard to cry on and give advice, wisdom, encouragement, etc.
Charles0 -
Similar deal to you
Hi Brian,
I was 46 SCC left Tonsil with some activity in 2 nodes in the neck. Had surgery and then IMRY and Erbitux.
Treatment fro me was rough. Lost lots of weight, had a PEG installed week 3. Got through. It took about 6 months to get back on m g=feet and then I rapidly kicked ****. I am am now super fit and bike ride and have new lean body. I do have the Dry mouth and while it's a pain in the ****, it's doable and I am above ground.
As for tips, ask your Docs about Amifostine which is administered before rads each day to preserve Salivary Gland function. Also, I used supplements and plant based PEG foods (No Dairy). L Glutamine is helpful to preserve muscle and help the Mouth and throat tissues heal (write these things down). Keep hydrated and even moderate exercise to get the body moving and gut working as if you need pain meds, it can play a bit of havoc with digestion and slow things right down.
In the end Brian, you will get through. Work on being super healthy, eat only good correct foods, beef up your immune system when appropriate, and focus on the end goal. You may have some dark days, but your prognosis sound very good.
Hopefully you will waltz through Brian.
Feel free to PM.
Scam0 -
meScambuster said:Similar deal to you
Hi Brian,
I was 46 SCC left Tonsil with some activity in 2 nodes in the neck. Had surgery and then IMRY and Erbitux.
Treatment fro me was rough. Lost lots of weight, had a PEG installed week 3. Got through. It took about 6 months to get back on m g=feet and then I rapidly kicked ****. I am am now super fit and bike ride and have new lean body. I do have the Dry mouth and while it's a pain in the ****, it's doable and I am above ground.
As for tips, ask your Docs about Amifostine which is administered before rads each day to preserve Salivary Gland function. Also, I used supplements and plant based PEG foods (No Dairy). L Glutamine is helpful to preserve muscle and help the Mouth and throat tissues heal (write these things down). Keep hydrated and even moderate exercise to get the body moving and gut working as if you need pain meds, it can play a bit of havoc with digestion and slow things right down.
In the end Brian, you will get through. Work on being super healthy, eat only good correct foods, beef up your immune system when appropriate, and focus on the end goal. You may have some dark days, but your prognosis sound very good.
Hopefully you will waltz through Brian.
Feel free to PM.
Scam
I had Squamous Cell Carcinoma, unknown primary. I had 35 radiation treatments and just 2 chemos treatments. I'm 5 months post treatment and feeling pretty much back to normal. The changes now are I have pretty bad dry mouth, some things don't taste the same, and some things tastes just plain bad, I still have some fatigue but not terrible. From the surgery I have some tightness in my neck, I still get mucous in the morning but once I hack it up that's about it for the day (sexy I know! LOL). BUUUUTTTT even with those side effects, I work a 54 hour a week job, I have a 4 year old and 8 month old that I take to the park, zoo, anywhere! I exercise when I can, I eat and munch all day long (just drink a lot more than I did before!) I still go out sometimes on Saturday nights and have a few drinks with some of my friends and get my dance on lol, so all in all I'm living a very normal life after all the treatments! Treatment is a scary thing, and it's definitely NOT an easy thing to go through, I don't want to lead you on to thinking it's a piece of cake. I want to let you know though, it DOES get better. MUCH better. Lots of love to you.0 -
My twinIrishgypsie said:Sounds like you could be my twin!
Hi Brian, I had got diagnosed right about the same time last year. Same age, right tonsil, right lymphnode, hpv+. I'm sad that you had to join this fraternity; but happy you reached out for support. Lots of wonderful people here willing to lend a keyboard to cry on and give advice, wisdom, encouragement, etc.
Charles
So how was your experience? Long term effects? Are you cancer-free now?
Brian0 -
Brian,
4 years ago I faced
Brian,
4 years ago I faced your same situation. Tonsil cancer, (dissection), 37 rads, 3 cisplatins. I heard all the horror stories and at times I was quite worried going into the treatments. As the treatments went along, my throat and my energy level got gradually worse each day. I had to get a feeding tube about 4 weeks into the treatments. By the last rad, I was really dragging. HOWEVER!!!! I made it to work (office job) every day except chemo days. (even though some days were only half days) In other words, I was able to manage all of the side effects and still carry on with my every day life. I recovered quickly after the final rad. Please don't worry too much, its not easy and it'll be a rough several months but it wasn't near as bad as the horror stories. Good luck and hang in there.
Mike0 -
My Experience - Abbreviated Version
Brian,
Not sure if I like you or not, LOL...sorry your Subject Topic Title struck me as funny...
My experience started with STG III SCC Tonsil Cancer, and a lymphnode HPV+.
This was January 2009, tonsils were removed and port installed. Nine weeks of chemo in three cycles (Cisplatin, Taxotere and 5FU). This followed by seven weeks of weekly chemo (Carboplatin) and daily rads with Amifostine injections given each day just before the rads.
I was about 275 and 6' going in, good health and on no meds. Being a little generously nourished, I wasn't recommended to have a PEG installed (and it was never an issue), I lost maybe 45# total.
I lost all of my hair, (head and body) around round two of the chemo, but most started coming back relatively soon. Other than a small strip at the very bottom on the lower part of my neck, and most beard under the chin (radiation related).
Probably the worst for me was around week four or the rads and the next few weeks post rads (seven weeks total). During that time I mainly survived on Ensure Plus and water... I had a routine, grind a percocet in a 1/4 glass of water, set aside. A swig of liquid exaction, glass of water, one or two cans of Ensure Plus, a few Delmont sliced peaches (to keep the throat muscles working), another glass of water, and then the percocet in water...all followed by a nice warm shower...not sure, but it helped relive the pain.
Treatment ended in June 2009, all follow-ups have been clean. I saw my NET, and Chemo MD every three months the first year and the rads MD every six months.
It took until March 2010 for all blood work to come back into normal levels...everything, still no meds, I'm 57.
Since that first year, I still see my NET every 3-4 months and my chemo MD every six, no longer see the rads MD.
My TTS levels are out of range (normal .4 - 5.0 and I'm around 6+). That being said, my Thyroid is on its way out, but this is usually easily treated with synthetic thyroid meds such as Synthroid.
I lost all taste and saliva for about 3 - 6 months, but now after nearly two years post treatment, I have regained nearly 90 - 95% of both back.
Cisplatin can have a lot of side effectts, it's something that should be monitored and communicate anything going on with your MD's.
Hope that covers it...ended up being longer than I had anticipated...LOL.
Best,
John0 -
SIDE EFFECTS
Welcome to the group. The others who commented share the same opinion as I. Everyone will react differently. Myself, I had a primary of R Tonsil with Mets to the neck. I had 3 surgeries, 3 rounds of Cisplatin and 35 Rads. I felt like I handled the chemo ok, but have pretty significant ringing in my ears and some hearing loss. I did not do well with the radiation. I had huge mouth sores, bad mucous, bad skin burns ETC. I am 5 months post treatment on 3-21 and am boucing back fairly well. My biggest complaint is fatigue and now possibly a condition called L'Hermettes has set in. This is when you lower your head of duck your chin into your chest and then an electrical type tingle hits me from my head to my toes.
In short, My Docs "threw the book at the C" and I feel I have the best chance to remain cured, not in remission.
Best!!
Mike0 -
Hi Brian,
I was diagnosed with Base of tongue Cancer, stage IV, spread to lymph node in neck, HPV+
Treatment was 35 rads and 3 rounds cisplatin - 3 weeks apart, both treatments started the same day.
I was diagnosed at 42 yrs old and was healthy and had been exercising.
I had nausea the first day after treatment began but then never had it again.
My neck did get red like a sunburn and peeled. It is still slightly redder than normal.
I did not get a peg or a port.
I was always able to swallow.
I never needed pain meds.
My hair did not fall out, but my facial hair stopped growing in the areas where the radiation was concentrated.
My taste started changing the first week of treatment and slowly I lost all taste but could always seem to taste carnation instant breakfast.
The last week of treatment plus one week after I produced lots of mucous in my mouth and throat and had to sleep sitting up. Then my mouth started to dry out and now oral thrush keeps coming and going.
My taste started coming back 3- 4 weeks post treatment.
I am now 6 weeks post treatment.
My mouth is still dry but is getting better...
I only lost a few pounds and quickly put it back on....when you cant taste anything it really affected my appetite.
I can eat basically anything I want but I am sensitive to spicy things.
My advice....use your swallowing muscles as much as possible throughout the treatment and be very diligent with your oral care.
Dominic
I have a lot of my taste back0 -
I am 25 and last year I diagnosed with NPC stage 4+ where one lymph node tested positive for the cancer. I had surgery to remove the lymph node on my right side of the neck.DominicM said:Hi Brian,
I was diagnosed with Base of tongue Cancer, stage IV, spread to lymph node in neck, HPV+
Treatment was 35 rads and 3 rounds cisplatin - 3 weeks apart, both treatments started the same day.
I was diagnosed at 42 yrs old and was healthy and had been exercising.
I had nausea the first day after treatment began but then never had it again.
My neck did get red like a sunburn and peeled. It is still slightly redder than normal.
I did not get a peg or a port.
I was always able to swallow.
I never needed pain meds.
My hair did not fall out, but my facial hair stopped growing in the areas where the radiation was concentrated.
My taste started changing the first week of treatment and slowly I lost all taste but could always seem to taste carnation instant breakfast.
The last week of treatment plus one week after I produced lots of mucous in my mouth and throat and had to sleep sitting up. Then my mouth started to dry out and now oral thrush keeps coming and going.
My taste started coming back 3- 4 weeks post treatment.
I am now 6 weeks post treatment.
My mouth is still dry but is getting better...
I only lost a few pounds and quickly put it back on....when you cant taste anything it really affected my appetite.
I can eat basically anything I want but I am sensitive to spicy things.
My advice....use your swallowing muscles as much as possible throughout the treatment and be very diligent with your oral care.
Dominic
I have a lot of my taste back
The treatment was 7 weeks 5 days a week with IMRT radiation and 4 rounds with cisplatin and 3 rounds with FU.
I never got sick with the chemo but I did get serious sick with radiation treatments.
I did get radiation burns on the neck from radiation bc I opted out to use the creams they gave me.
when I started radiation my back side of my hair did thin out and now there is a small area that is bold on back of my head and I did lose my side burns and my facial hair but soon as my treatments was done I started to grow back my side burns and facial hair about 3 months after treatments ended but I still have a small bold spot on back of my head yet from radiation treatments.
the tease the start to change after radiation treatments started but never did change in chemo treatment.
never had peg tube but I was told if I didn't gain 20 lbs in 3 months I would need to get a peg tube.
I do have major dry mouth and TMDJ and neck problems and shoulder problems from radiation and lymph node removal and having problems swallowing some solid foods and still have thick mucus and hacking small traces of blood with mucus after I get done eating foods.
I no longer can stand drinking any sugar drinks. Due to major tease changes. Only thing I can drink is water or milk.
My tease did change alot I am not going to lie about it.
cant stand greasy foods like I did. Which everything haves to be baked for now on.
I do get heartburn's if I eat spicy foods which I never gotten before the cancer treatments.
I did have mouth sores from chemo treatments and let me tell ya it was painful.
I do have problems sleeping at night very badly.
I think that is about it from what I learned from this cancer treatments.0
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