Lord!! This treatment is brutal!!! :(
The oncologist wasn't kidding when he said this is the hardest cancer treatment there is!! My father is going through stage 3 base tongue cancer treatment and he is on week 7. He would be done tuesday if it wasn't for the low blood levels and fever. He was I the hospital for 2 days, pumped him with antibiotics (as if his body needs any more drugs) and still cant find a reason for his fever other than low blood count. Now they may tack the 3 radiation treatments he missed to the back. He still has one more chemo treatment too. We are seriously considering stopping at least the last chemo treatment. This is so hard on him!!can't talk, in so much pain can't even keep track of how much pain medicine he is on, which really worries me. His tongue is so bad the nurse was shocked!! the saliva is so thick he chockes oN it constantly. I'm so worried about the long term effects, it makes me wonder if worth finishing the last week of treatment. I can't even believe I'm saying this this but his health really seems to be at risk, not only with the cancer but with everything else. Did any one experience something like this??? Any recommendations on how to get through this or how vital the last week of treatment really is..? I appreciate any feedback!
God bless.
AG
Comments
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it is brutal
Many people are not able to take the last chemo for a variety of reasons. His MD must balance treatment vs toxicity. "do no harm" right? Please express your concerns with his permission to his rad and med oncologists. The tongue can be helped depending on what the problem is. If it is thrush related, medications can help. If he has ulcers on the tongue find a dentist who has diode laser, it will provide relief and healing as well as the Magic Mouthwash which is more temporary. I am in my last week of radiation next week, and went through a very severe bout of mouth sores and my radiation oncologist revised my radiation plan in order to reduce the toxicity level. My dentist with his diode laser was my hero and helped me heal the ulcers quickly. Rad/onc did not seem aware of this. IMHO I think with the severity of side effects in head and neck cancer treatments, there should be a lot more emphasis on preventing/managing side effects and quality of life issues. Ask the nurse about a suction machine for the saliva.
PJ
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Diode laser? What is that and how does it work?PJ47 said:it is brutal
Many people are not able to take the last chemo for a variety of reasons. His MD must balance treatment vs toxicity. "do no harm" right? Please express your concerns with his permission to his rad and med oncologists. The tongue can be helped depending on what the problem is. If it is thrush related, medications can help. If he has ulcers on the tongue find a dentist who has diode laser, it will provide relief and healing as well as the Magic Mouthwash which is more temporary. I am in my last week of radiation next week, and went through a very severe bout of mouth sores and my radiation oncologist revised my radiation plan in order to reduce the toxicity level. My dentist with his diode laser was my hero and helped me heal the ulcers quickly. Rad/onc did not seem aware of this. IMHO I think with the severity of side effects in head and neck cancer treatments, there should be a lot more emphasis on preventing/managing side effects and quality of life issues. Ask the nurse about a suction machine for the saliva.
PJ
Thank you for your response:)
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It is a brutal treatment
There is no way to sugarcoat that. Your dad is currently in one of the worst weeks but damn if he didn't make it this far. The treatment punishes the body quite harshly but that is exactly why it works. They got this down pretty well and won't push him any further than he is capable. The chemo is killing good cells along with cancer cells, no way around that. I urge you to advocate for finishing as much of the treatment as he can. The last radiation treatments are generally a mop up operation where they change the radiation fields and target other possible areas of concern. Some here have skipped the last chemo treatment when absolutely necessary. Please defer to your Rad/oncologist on this one. No one else will really no the specifics of your dad's cancer like him/her. Just over the next hill I swear there is a pot of gold. Climb as much of it as you and he can.
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Thanks! I hope this is allratface said:It is a brutal treatment
There is no way to sugarcoat that. Your dad is currently in one of the worst weeks but damn if he didn't make it this far. The treatment punishes the body quite harshly but that is exactly why it works. They got this down pretty well and won't push him any further than he is capable. The chemo is killing good cells along with cancer cells, no way around that. I urge you to advocate for finishing as much of the treatment as he can. The last radiation treatments are generally a mop up operation where they change the radiation fields and target other possible areas of concern. Some here have skipped the last chemo treatment when absolutely necessary. Please defer to your Rad/oncologist on this one. No one else will really no the specifics of your dad's cancer like him/her. Just over the next hill I swear there is a pot of gold. Climb as much of it as you and he can.
Thanks! I hope this is all worth it. The fever really concerns us and it won't go away. we meet with the oncologist tomorrow, however, sometimes I feel like they are so focused on killing the cancer they don't really think of other long term effects. Trust me I'm all for killing the cancer, just want to make suthat the remaining treatment is fully necessary and it isn't a " one size fits all" approach.
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side effects
AG,
H&N Treatment is brutal and hard to watch, but your Father’s doctors have seen this before and will take him to completion if they can. I agree with ratface and you want him to get every opportunity to kill the cancer.
As bad as it is, good recovery can be expected. During some episodes of treatment side effects I am surprised my wife did not dial 911.
If he is treating all of the side effects and it is still too much they may alter his last few treatments.
Matt
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My limited understanding isAJG said:Diode laser? What is that and how does it work?
Thank you for your response:)
that it is a very low level type of laser in the red light spectrum. It cleans the tissues, bacteria, and cauterizes the nerves hence less pain! Google it for more details,
It also did not hurt, took 5 minutes.
Best Wishes for you and your Dad,
PJ
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AG, it is a very harsh tx and
AG, it is a very harsh tx and very hard for caretakers to watch. sometimes i think it is harder on them then us patients. try to hang in there and be strong for your dad. the doctors will know what's best for him and decide if he is able to complete the tx. he is almost to the light at the end of the tunnel. won't be long know and he'll be ringing the bell!! he will soon be on the road to recovery. recovery also starts out rough, so don't expect dad to be better right away. unfortunately, radiation keeps giving even after its done. but things will start to get better slowly. i hope they find out where the fever is coming from and that your dad feels a little better. Will be praying for dad and you. let us know how it goes and if the docs decide to complete the tx. try to have a Merry Christmas and a Happy, Healthy New Year.
God bless you,
dj
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Thank you DJ! This is verydebbiejeanne said:AG, it is a very harsh tx and
AG, it is a very harsh tx and very hard for caretakers to watch. sometimes i think it is harder on them then us patients. try to hang in there and be strong for your dad. the doctors will know what's best for him and decide if he is able to complete the tx. he is almost to the light at the end of the tunnel. won't be long know and he'll be ringing the bell!! he will soon be on the road to recovery. recovery also starts out rough, so don't expect dad to be better right away. unfortunately, radiation keeps giving even after its done. but things will start to get better slowly. i hope they find out where the fever is coming from and that your dad feels a little better. Will be praying for dad and you. let us know how it goes and if the docs decide to complete the tx. try to have a Merry Christmas and a Happy, Healthy New Year.
God bless you,
dj
Thank you DJ! This is very hard. He has been so healthy all his life and now this
He will make it through it though 
Meeting with the docs today and I've prayed for god to give them the wisdom to make the right decision for dad . We are so close!! Thank you so much for the prayers .0 -
Thank you..PJ47 said:My limited understanding is
that it is a very low level type of laser in the red light spectrum. It cleans the tissues, bacteria, and cauterizes the nerves hence less pain! Google it for more details,
It also did not hurt, took 5 minutes.
Best Wishes for you and your Dad,
PJ
Have you had any side effects from it? Im afraid the laser may affect taste buds long term?
I found a dentist near by who does diode and Erbium-yag which doesnt have heat. He said they would both help. Just want to make sure it isnt fixing something temporarely and having a long term effect.
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Have they been giving
him anything to raise his blood counts while he's been in chemo? Like Neupegen? Have they offered him any transfusions (blood) to boost his cell counts? I had both, many times during treatment.....when my counts were in the toilet.
For the mouth sores, maybe do check around and see if someone close has the laser treatment. I had never heard of it before...but if I had, I would have been seriously looking for a fast cure to them.....they're AWFUL!
Missing rad appointments happens...machines break down, neck gets too messy, mouth sores happen....but they always tack the ones you've missed on to the end.....be glad they do. I honestly gave a huge thought to skipping the last chemo.....I was such a mess. But when the day came, I plowed through it......it was the last, and my body wasn't going to get beat up every again, so I plowed through that, also.....Today, nearly 18 months out, I'm glad I did.....one less worry when it comes to scan time. I'd hate facing them knowing I didn't do everything I could to prevent a recurrance.
The thick saliva is part of rads.....magic mouthwast will help the sores, soda/salt rinses bust up saliva....lots of hydration helps too.
p
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We spoke to the doc today and
We spoke to the doc today and he took away the last chemo treatment.. He mentioned it before we even had a chance to ask;) how ever they are going to double up on his rads to make up for the lost ones. One in the am ad one in the afternoon. That sounds like a lot for one day ... But they say its safe. Did anyone do this?
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It's standard in some hospitalsAJG said:We spoke to the doc today and
We spoke to the doc today and he took away the last chemo treatment.. He mentioned it before we even had a chance to ask;) how ever they are going to double up on his rads to make up for the lost ones. One in the am ad one in the afternoon. That sounds like a lot for one day ... But they say its safe. Did anyone do this?
Some hospitals think it's better to give radiation twice daily and it's a standard method of treatment in some places. They will not exceed the radiation level of his treatment plan as it's carefully monitored and documented. Hopefully you can stay on the premises or the commute is short.
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I asked if we could do 2 treatments the same dayAJG said:We spoke to the doc today and
We spoke to the doc today and he took away the last chemo treatment.. He mentioned it before we even had a chance to ask;) how ever they are going to double up on his rads to make up for the lost ones. One in the am ad one in the afternoon. That sounds like a lot for one day ... But they say its safe. Did anyone do this?
so I could be done before Christmas. My radiation oncologist said no due to me being "hyper sensitive" to radiation and the side effects I was having (mainly severe mouth and throat ulcers). That was my experience.
PJ
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Not unusualPJ47 said:I asked if we could do 2 treatments the same day
so I could be done before Christmas. My radiation oncologist said no due to me being "hyper sensitive" to radiation and the side effects I was having (mainly severe mouth and throat ulcers). That was my experience.
PJ
I was just told at Mayo this week that 2/3 of patients do not finish the entire course of Cisplatin. I did not finish chemo butI did finish my rads. Rads were so hard on me that I could not conceive of doubling up in one day.
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I doubled upAJG said:We spoke to the doc today and
We spoke to the doc today and he took away the last chemo treatment.. He mentioned it before we even had a chance to ask;) how ever they are going to double up on his rads to make up for the lost ones. One in the am ad one in the afternoon. That sounds like a lot for one day ... But they say its safe. Did anyone do this?
but only for one day. It was so I could finish on a Friday and not have to go back! I only had rads, no chemo, and I ALMOST didn't make through the 30 treatments. I found power and encouragement through God and the wonderful people on here. It is AWFUL and very hard on the body. Prayers for him to push through and finish strong!
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Sounds tough. I've been
Sounds tough. I've been there. Stage 3, base of tongue. 7 weeks of radiation & three rounds of Cemo. Had the feaver, was in the hospital for three days right after my second treatment of Cemo. ER room at 1:30 in the morning. I kepted up with the radiation treatment while I was there base on not giving up the fight. It's rough. Lost a lot of weight nearly 50 pounds. It's behind me now and accepting a new normal as the doctors told me. Take a day at a time.
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Stage III base of tongueTime Bandit said:Sounds tough. I've been
Sounds tough. I've been there. Stage 3, base of tongue. 7 weeks of radiation & three rounds of Cemo. Had the feaver, was in the hospital for three days right after my second treatment of Cemo. ER room at 1:30 in the morning. I kepted up with the radiation treatment while I was there base on not giving up the fight. It's rough. Lost a lot of weight nearly 50 pounds. It's behind me now and accepting a new normal as the doctors told me. Take a day at a time.
Boy oh boy was I in pain. Pure misery My neck was so burned it looked like my skin was melting off. They had to stop rads 3x during my treatments, one time for almost a week. I finished all the zaps, but for a full 6-8 weeks AFTER the treatments was the worst. I lost 70lbs in treatment, feeding tube in my stomach for almost 7 months and by the time it was all over I had lost a total of 100lbs (big guy to begin with so I was fortunate in that)I don't share this to one up you or depress you but hear this part please..I am now approaching my 2 year mark, the last two years I have spent so much time with my wife and kids, hunting in high altiudes in the back country of Idaho (where I live) cutting 6-8 cords of wood (I use a chaisaw and then tie up thos logs to my truck, pull them out and take them home and split them by hand
When hunting I carry a 30lb pack, two guns and I can walk up to 5-6 miles a day in below zero temps or 80' temps. I tell ya I am having the time of my life. Before cancer I has so many things I wanted to do but never "found" the time to do them...having cancer made me realize I needed to go after the things I had always dreamed of, and I am now doing that. I was always a family man and spent all my off work time with my wife and five kids, so that never changed, but that time sure became and is more precious.So when he gets out the other side of this and meets Mr. NED...you just go hottin and hollering and enjoy life and tell him his fellow head and neck warriors said it will end!!!
Bless you all....
Tim
Stage III base of tongue, one lymph node - Erbitux and rads only
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h---
H & N cancer sucks, put don't give up, my 38 rads and 6 chemo, a trach for over 2 years, 2 feeding , couldn't talk for over 1 year, I have no trach and feeding tube and at my new normal, this was 3 years ago, the closest to h---, I ever want to get, stay postive for your Dad, he'll be in my prayers, bjw1955
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It really is brutal
My husband's last week of treatments almost killed him. He got MIRSA also in the burned skin. After the treatments he had to go into the hospital and then was on 10 days of iv antibiotics. He was stage 4 when they found it. six months after finishing the treatments, cancer came back in his port site...and now they tell us it had to be in his blood already at the beginning of treaments.
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