Induction Chemotherapy with Cetuximab
Comments
-
Base of Tongue
Hi, I was diagnosed with base of tongue stage 4 cancer, which had spread to lymph nodes on 1 side of my neck. My treatment included 7 weeks of rads and chemo/cistplatin. I finished treatment July 31 and had a clean CT scan a few weeks ago. I know there are several other regulars on this site with similar dx and have made it through. So yes, it is very possible to survive this type of cancer.
Scam brings up some excellent points. Treatment can be rough, for some more so than for others. A positive outlook is step 1, in my opinion. As Scam pointed out, nutrition is also very important, food is medicine. Your wife will need you to be strong, I don't know what I would have done without my wife taking care of me. Lots of very good info on this site and the people here are the best. Cheers
Jimbo0 -
Survive - yes
Hi Worried,
Understand your concern. While mine was not as advanced, there is always a strong chance to survive this cancer. The roughest part now will be the treatment.
Her rads and Chemo regimen will be quite heavy and it is unknown how well she will cope as we all react differently. Some march through and even continue to work right through treatments while others are knock down for many months, and may need hospitalization during treatment.
She may be advised to talk to the Doctors about getting a PEG installed earlier to help with her food intake as nutrition is critical and it can be used to give her all the nutrition if required while her mouth and throat and tongue recover. Many of us used the PEG and it is generally advised to get it before she starts and even to start a boosted nutrition program before the start of treatment as the better shape she is in before will usually mean better tolerance and result from treatment.
I alway advise to study up on the benefits of nutrition and supplements. The statistics are there to show an over all improvement in treatment response, recovery and survival percentages. I further subscribe to strict diet to eliminate all risk foods and only give the body positive nutrition. I also use a list of Supplements to ensure the body gets all the crucial anti-oxidants, enzymes, minerals and vitamins. That is a personal choice and you will need to study up to get yourself informed. Your Doctors will usually put lower importance on diet and nutrition than it deserves. I have pasted in a very good reference paper from LEF below.
It will be rough ride, but be assured if you fight this from every side you have available, the numbers get better so please do it and 'yes' she can get through it.
Stay strong for her and keep us informed as you go through. The wonderful people here will always be there for support and advice.
Scambuster
http://www.lef.org/protocols/cancer/alternative_cancer_therapies_01.htm0 -
Induction chemo with TPF
My husband is going throught the same treatment having had the same drugs for induction. His oncologist ordered the PEG tube before treatment started and we are very glad he did. Buzz has needed the PEG even through the induction phase. He just started rads and so has had no side effects yet but we anticipate his needing 100% of his nutrition via the PEG. He is also on cetuxamab which is truly a "kinder, gentler" drug compared with the induction drugs. It will be rough but this forum will be a support for you as it has been for me, the caregiver. Those of us battling this cancer do know what you are going through. Take care!0 -
Induction Chemo
Connie
I underwent a clinical trial at the U of Chicago with Erbitux. It consisted of 8 weeks of indcution with Erbitux,Taxol & Carboplatin. Then I underwent concurrent chemo/radiation that consisted of twice daily rads, weekly Erbitux, twice daily Hydroxyurea, and 120 hrs of 5FU per week.
I too was HPV+ with unknown primary, mine was on the right lymph nodes being unknown primary they radiated both sides of my neck as a precautiion.
As others have said the PEG is a godsend I needed mine in the 5th week of induction and it kept me from losing more weight than I did. My ENT has me doing swallowing exercises that helped and she advsied me that they would be lifelong exercises and become part of your everyday routine.
I am 12 months post and still here, of course she can survive. A positive attitude is a must on both of your parts to get thru this. Everyyone here reacted differntly to treatment. But support on your part is a must to help her get thru the tough parts.
You have come to the right place and I wish I would have found all of these great people before I went thru my treatment.
Best Wishes & Prayers for you and your wife
Dave0 -
PEGScambuster said:Survive - yes
Hi Worried,
Understand your concern. While mine was not as advanced, there is always a strong chance to survive this cancer. The roughest part now will be the treatment.
Her rads and Chemo regimen will be quite heavy and it is unknown how well she will cope as we all react differently. Some march through and even continue to work right through treatments while others are knock down for many months, and may need hospitalization during treatment.
She may be advised to talk to the Doctors about getting a PEG installed earlier to help with her food intake as nutrition is critical and it can be used to give her all the nutrition if required while her mouth and throat and tongue recover. Many of us used the PEG and it is generally advised to get it before she starts and even to start a boosted nutrition program before the start of treatment as the better shape she is in before will usually mean better tolerance and result from treatment.
I alway advise to study up on the benefits of nutrition and supplements. The statistics are there to show an over all improvement in treatment response, recovery and survival percentages. I further subscribe to strict diet to eliminate all risk foods and only give the body positive nutrition. I also use a list of Supplements to ensure the body gets all the crucial anti-oxidants, enzymes, minerals and vitamins. That is a personal choice and you will need to study up to get yourself informed. Your Doctors will usually put lower importance on diet and nutrition than it deserves. I have pasted in a very good reference paper from LEF below.
It will be rough ride, but be assured if you fight this from every side you have available, the numbers get better so please do it and 'yes' she can get through it.
Stay strong for her and keep us informed as you go through. The wonderful people here will always be there for support and advice.
Scambuster
http://www.lef.org/protocols/cancer/alternative_cancer_therapies_01.htm
Thank you for all your replys, I asked my wife's chemo doctor about a peg tube before treatment started and she said that she did not recommend the peg. My wife is being treated at MD Anderson Hospital, rated the best cancer hospital in the nation, maybe the world. Connie is doing her induction chemo as I write this to you. She is in a clinical trial and I have wondered about whether a trial is the best way to go with her treatment. We were told that we would be in 1 of 2 trials currently going on at MDA, a computer picked which trial we were to receive. Personally, I would rather have received info about both trials and info about what treatment she would receive if she opted for normal treatment. Then we could have chosen which treatment of the 3 was best suited for Connie. We did not have insurance to cover the cost of treatment so we are on an indegent program. I just hope the doctors give Connie the best medicine for her health and not be more worried about clinical trial. My wife wants to help others but she also has to do what is best for herself. I on the other hand am not a doctor and I don't want to question everything Connie's doctor recommends. Since Connie has to do 6-7 weeks radiation after chemo and had a top denture before treatment and has since had her lower teeth removed rendering her partials useless, I wonder if I should insist on the Peg tube. As you all say food is also medicine! What do you guys think?0 -
connieprice1
From my experience with sqaumous cell at the base of my tongue and almost seven years ago i can say she will do fine...She is having a more intense treatment than did initially but things are fine with me...I do have all the after effects of dry mouth, taste, swallowing but it is fine considering my choices.. My swallowing clinic at my hospital is very good and is always there when and if needed..You have plugged into the right site for support and wish i had found this many years ago...Good luck and be Positive..Stay hydrated...MJ0 -
Clinical Trial ?connieprice1 said:PEG
Thank you for all your replys, I asked my wife's chemo doctor about a peg tube before treatment started and she said that she did not recommend the peg. My wife is being treated at MD Anderson Hospital, rated the best cancer hospital in the nation, maybe the world. Connie is doing her induction chemo as I write this to you. She is in a clinical trial and I have wondered about whether a trial is the best way to go with her treatment. We were told that we would be in 1 of 2 trials currently going on at MDA, a computer picked which trial we were to receive. Personally, I would rather have received info about both trials and info about what treatment she would receive if she opted for normal treatment. Then we could have chosen which treatment of the 3 was best suited for Connie. We did not have insurance to cover the cost of treatment so we are on an indegent program. I just hope the doctors give Connie the best medicine for her health and not be more worried about clinical trial. My wife wants to help others but she also has to do what is best for herself. I on the other hand am not a doctor and I don't want to question everything Connie's doctor recommends. Since Connie has to do 6-7 weeks radiation after chemo and had a top denture before treatment and has since had her lower teeth removed rendering her partials useless, I wonder if I should insist on the Peg tube. As you all say food is also medicine! What do you guys think?
Connie
I believe you were chosen for what is called an arm. It is one trial with two options. My trial with Erbitux had two arms. A computer chose for the hospital which arm you would be in. Do you have a copy of the trial?
I received all the info prior to agreeing to anything. All my options were clearly spelled out for my wife & I. I was given the option to say no. I believe my option then would have been the normal cisplatin 35 rads regimine?
The docotors will give her the best care and If they are anything like U of Chicago, and you dont like the way things are going you can withdraw from the trial. How many weeks of Erbitux is your trial? I had 18 weeks. Watch for the rash and dont be alarmed. The hospital should be giving meds to control it somewhat.
As mentioned previous I would opt for the PEG tube after my experience but others here have made it thru just fine without. Also never hesitate to question anything that doctos do or say, if you feel that this trial is not what is best tell them.
Wishes & Prayers
Dave0 -
Stage Four Base of Tongue Here, Too
Hubby,
I was diagnosed Stage Four BOT with lymph node involvement 13 months ago. Did nine weeks of induction chemo(Taxotere, Cisplatin and 5-FU), followed by seven weeks of radiation with weekly (except week six) doses of carboplatin. Docs told me initially I'd have surgery - then after looking at my scans, surgeon said surgery wasn't an option up front, but might be needed later - would probably be needed for lymph nodes which don't always respond well to treatment, he said. Finished treatment in March. First CT post treatment showed primary tumor and one lymph node tumor gone, second affected lymph node still enlarged, but smaller than it had been, PET activity a little elevated, but much lower than before, and could be considered withing the range of normal. Second post treatment CT was almost two weeks ago (insuance company wouldn't OK PET) - the node has gotten bigger - THEN insurance company OK'd a PET - waiting for results. Doc says he thinks we'll be going for neck dissection next month,but we'll see what PET says. Doc also says there's every reason to think the neck dissection will take care of it. There's a good chance your wife will be cleared, and won't need any kind of surgery later - my radiologist said from the start we had a good chance that I wouldn't need surgery at the end, and if it turned out that I did, we'd cross that bridge when we came to it.
You have every right to be scared - don't blame you. But 13 months away from stage four base of tongue inoperable diagnosis, and I generally feel good. I can eat most things and can taste almost 100% as good as before. I rarely need a nap during the day now. People who know me are very pleased with the way I look and my level of energy (most of the time). And I was HPV negative, so your wife's cancer should respond better to treament (statistically) than mine did.
there's a chance, too, that your wife will not need a feeding tube. If she never quits swallowing, she won't need to re-learn. I had to have a PEG, but luckily could swallow water the entire time, so didn't lose my swallow.
Hoping for the best for you and your wife. Treatment is rough, but it's doable. Do well - keep us updated.0 -
PEG Questions..connieprice1 said:PEG
Thank you for all your replys, I asked my wife's chemo doctor about a peg tube before treatment started and she said that she did not recommend the peg. My wife is being treated at MD Anderson Hospital, rated the best cancer hospital in the nation, maybe the world. Connie is doing her induction chemo as I write this to you. She is in a clinical trial and I have wondered about whether a trial is the best way to go with her treatment. We were told that we would be in 1 of 2 trials currently going on at MDA, a computer picked which trial we were to receive. Personally, I would rather have received info about both trials and info about what treatment she would receive if she opted for normal treatment. Then we could have chosen which treatment of the 3 was best suited for Connie. We did not have insurance to cover the cost of treatment so we are on an indegent program. I just hope the doctors give Connie the best medicine for her health and not be more worried about clinical trial. My wife wants to help others but she also has to do what is best for herself. I on the other hand am not a doctor and I don't want to question everything Connie's doctor recommends. Since Connie has to do 6-7 weeks radiation after chemo and had a top denture before treatment and has since had her lower teeth removed rendering her partials useless, I wonder if I should insist on the Peg tube. As you all say food is also medicine! What do you guys think?
Hi Worried,
1. Do not be afraid or feel stupid for asking questions ! You have every right and a need to ask and be informed of exactly what is going on with her treatment. This is all very important stuff for you two trial or not. Write down you questions as they come up and then take your list with you. Jot down the answers as the information overload is usually a challenge at this point till you get a good grip on everything that is going on.
2. The PEG can be installed later if needed. As she will have several weeks of Induction Chemo first, I gather the main side effects are nausea which will affect her food intake but her mouth and throat should be OK. Radiation, well that's another story, that seems to be where most of us have the pain and sometimes you simple cannot eat and in that case the PEG comes into it's own.
You can have the PEG installed and not have to use it, but if you don't have it, well you don't have a choice. The procedure is fairly low risk but all surgeries do have risk factors. I am curious why your Doctor didn't 'recommend' it ?? Will it mess up their statistics ? Will it cost them ?? My Oncologist didn't even mention it and I didn't even know what one was till a friend whose brother went through H & N treatment called told me I should get one. I mentioned it to my Doctor and he immediately picked up the phone and booked me in for installation 10 hours later. I would question her "why not" ? and "what if she loses a lot of weight" ? And "Can we get one later ?".
There is not much downside to the PEG: A little Pain for a couple of days, it's a bit of nuisance, you do need the minor surgery and she will have a small scar. Getting it in earlier is usually better as she will be stronger. Her immune system will take a beating with the toxic chemo and so resistance to infections etc becomes more of a concern.
If you make two lists, 1. with benefits and 2. the disadvantages - that may help with your decision. Either way you can always get it in later - so no need to panic. Because there is so much going, it is best to take each step one at a time as each issue comes up deal with it then. Keep us posted.
Regds
Scambuster0 -
Worried HusbandPam M said:Stage Four Base of Tongue Here, Too
Hubby,
I was diagnosed Stage Four BOT with lymph node involvement 13 months ago. Did nine weeks of induction chemo(Taxotere, Cisplatin and 5-FU), followed by seven weeks of radiation with weekly (except week six) doses of carboplatin. Docs told me initially I'd have surgery - then after looking at my scans, surgeon said surgery wasn't an option up front, but might be needed later - would probably be needed for lymph nodes which don't always respond well to treatment, he said. Finished treatment in March. First CT post treatment showed primary tumor and one lymph node tumor gone, second affected lymph node still enlarged, but smaller than it had been, PET activity a little elevated, but much lower than before, and could be considered withing the range of normal. Second post treatment CT was almost two weeks ago (insuance company wouldn't OK PET) - the node has gotten bigger - THEN insurance company OK'd a PET - waiting for results. Doc says he thinks we'll be going for neck dissection next month,but we'll see what PET says. Doc also says there's every reason to think the neck dissection will take care of it. There's a good chance your wife will be cleared, and won't need any kind of surgery later - my radiologist said from the start we had a good chance that I wouldn't need surgery at the end, and if it turned out that I did, we'd cross that bridge when we came to it.
You have every right to be scared - don't blame you. But 13 months away from stage four base of tongue inoperable diagnosis, and I generally feel good. I can eat most things and can taste almost 100% as good as before. I rarely need a nap during the day now. People who know me are very pleased with the way I look and my level of energy (most of the time). And I was HPV negative, so your wife's cancer should respond better to treament (statistically) than mine did.
there's a chance, too, that your wife will not need a feeding tube. If she never quits swallowing, she won't need to re-learn. I had to have a PEG, but luckily could swallow water the entire time, so didn't lose my swallow.
Hoping for the best for you and your wife. Treatment is rough, but it's doable. Do well - keep us updated.
Like Hondo, my experience is somewhat limited to NPC.
Thing is- looks to me like you've got a great start, as the best care possible is likely to be had at MD Anderson, which means you should have a lotta confidence in your Drs. And that's a key part of the necessary Positive attitude. Survival rate for H&N is excellent.
You mention that the PEG is not advised by your Dr., and one would like to think that is a good sign. Nutrition is critical. With her teeth thing, she'll likely be drinking her meals, anyway, and continuing the swallowing thing is important. Kinda hard to figure how her getting a PEG would be a negative thing, though. But, you are at MD Anderson, and they should know where this treatment will take your wife.
You must insist that your wife stays real on how she is coping with it all- both mental and physical- with her Drs. The battle can be won, and can be won much easier with all the help the Drs. can provide with meds, but they have to know there's the need. This is 2010, and significant advances have been made with H&N over the last decade. She will survive this thing.
Believe
kcass0 -
PEGScambuster said:PEG Questions..
Hi Worried,
1. Do not be afraid or feel stupid for asking questions ! You have every right and a need to ask and be informed of exactly what is going on with her treatment. This is all very important stuff for you two trial or not. Write down you questions as they come up and then take your list with you. Jot down the answers as the information overload is usually a challenge at this point till you get a good grip on everything that is going on.
2. The PEG can be installed later if needed. As she will have several weeks of Induction Chemo first, I gather the main side effects are nausea which will affect her food intake but her mouth and throat should be OK. Radiation, well that's another story, that seems to be where most of us have the pain and sometimes you simple cannot eat and in that case the PEG comes into it's own.
You can have the PEG installed and not have to use it, but if you don't have it, well you don't have a choice. The procedure is fairly low risk but all surgeries do have risk factors. I am curious why your Doctor didn't 'recommend' it ?? Will it mess up their statistics ? Will it cost them ?? My Oncologist didn't even mention it and I didn't even know what one was till a friend whose brother went through H & N treatment called told me I should get one. I mentioned it to my Doctor and he immediately picked up the phone and booked me in for installation 10 hours later. I would question her "why not" ? and "what if she loses a lot of weight" ? And "Can we get one later ?".
There is not much downside to the PEG: A little Pain for a couple of days, it's a bit of nuisance, you do need the minor surgery and she will have a small scar. Getting it in earlier is usually better as she will be stronger. Her immune system will take a beating with the toxic chemo and so resistance to infections etc becomes more of a concern.
If you make two lists, 1. with benefits and 2. the disadvantages - that may help with your decision. Either way you can always get it in later - so no need to panic. Because there is so much going, it is best to take each step one at a time as each issue comes up deal with it then. Keep us posted.
Regds
Scambuster
I did ask during her 1st induction treatment and the nurse said to take it 1 day at a time. My wife has done real well so for. Her induction chemo was Nov. 26, so far no nausea but I realize it is very early in treatment. So far Diarrhea has been only side effect. We are going to look for a wig and hats Monday. Thanks a lot scam buster for helping us, we really appreciate it. thanks a million, Homer & Connie0 -
I just wanted to let youPam M said:Stage Four Base of Tongue Here, Too
Hubby,
I was diagnosed Stage Four BOT with lymph node involvement 13 months ago. Did nine weeks of induction chemo(Taxotere, Cisplatin and 5-FU), followed by seven weeks of radiation with weekly (except week six) doses of carboplatin. Docs told me initially I'd have surgery - then after looking at my scans, surgeon said surgery wasn't an option up front, but might be needed later - would probably be needed for lymph nodes which don't always respond well to treatment, he said. Finished treatment in March. First CT post treatment showed primary tumor and one lymph node tumor gone, second affected lymph node still enlarged, but smaller than it had been, PET activity a little elevated, but much lower than before, and could be considered withing the range of normal. Second post treatment CT was almost two weeks ago (insuance company wouldn't OK PET) - the node has gotten bigger - THEN insurance company OK'd a PET - waiting for results. Doc says he thinks we'll be going for neck dissection next month,but we'll see what PET says. Doc also says there's every reason to think the neck dissection will take care of it. There's a good chance your wife will be cleared, and won't need any kind of surgery later - my radiologist said from the start we had a good chance that I wouldn't need surgery at the end, and if it turned out that I did, we'd cross that bridge when we came to it.
You have every right to be scared - don't blame you. But 13 months away from stage four base of tongue inoperable diagnosis, and I generally feel good. I can eat most things and can taste almost 100% as good as before. I rarely need a nap during the day now. People who know me are very pleased with the way I look and my level of energy (most of the time). And I was HPV negative, so your wife's cancer should respond better to treament (statistically) than mine did.
there's a chance, too, that your wife will not need a feeding tube. If she never quits swallowing, she won't need to re-learn. I had to have a PEG, but luckily could swallow water the entire time, so didn't lose my swallow.
Hoping for the best for you and your wife. Treatment is rough, but it's doable. Do well - keep us updated.
I just wanted to let you know Pam that we really appreciate this info and I pray you will be ok also. We will keep in touch with everyone here as their are a lot of nice people here. Thank you, Homer & Connie0 -
In response to the peg questionconnieprice1 said:PEG
Thank you for all your replys, I asked my wife's chemo doctor about a peg tube before treatment started and she said that she did not recommend the peg. My wife is being treated at MD Anderson Hospital, rated the best cancer hospital in the nation, maybe the world. Connie is doing her induction chemo as I write this to you. She is in a clinical trial and I have wondered about whether a trial is the best way to go with her treatment. We were told that we would be in 1 of 2 trials currently going on at MDA, a computer picked which trial we were to receive. Personally, I would rather have received info about both trials and info about what treatment she would receive if she opted for normal treatment. Then we could have chosen which treatment of the 3 was best suited for Connie. We did not have insurance to cover the cost of treatment so we are on an indegent program. I just hope the doctors give Connie the best medicine for her health and not be more worried about clinical trial. My wife wants to help others but she also has to do what is best for herself. I on the other hand am not a doctor and I don't want to question everything Connie's doctor recommends. Since Connie has to do 6-7 weeks radiation after chemo and had a top denture before treatment and has since had her lower teeth removed rendering her partials useless, I wonder if I should insist on the Peg tube. As you all say food is also medicine! What do you guys think?
Part of what needs to be considered is how much weight she has lost already and how run down she is. My husband was diagnosed with squamous cell which began on floor of his mouth spread to jaw etc. He lost a considerable amount of weight prior to having surgery and didn't have a lot to spare to begin with. His doctor breifly mentioned the peg prior to surgery my husband was scared and I guess a bit in denial that things were as dire and so he opted for waiting till after surgery for peg- to make a long story short, he should have done it before to build up his reserves. I truly believe had he been in better shape to begin with he would have healed more quickly. He is still fighting for health but his situation is complicated. At this point not having to worry about your wife's nutrition would just be one less thing on both of your minds. Good luck to you both,peace Dotsmom0
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