The end of treatment is in sight

jtl
jtl Member Posts: 456
Next week is my final week of radiation and 8 infusions of Eurbitux. My observations so far are that other than losing most of my sense of taste. I can taste a few things but not very well. I have also lost a good part but not all of my saliva. I can swallow pretty well and can eat things like clam chowder with potatoes but my main diet is Ensure. I have only lost 3lbs in 6 weeks, although the first week was like nothing was happining. I did not need a PEG. I have read most of the posts and it sure seems like there is a wide range of experiences and I feel very fortunate not to have needed surgery other than to remove a lymph node to byopsy. My cancer was extremely small, my ENT referred to it as a micro tumor on the side of the throat close to the base of the tongue but it sure made for a large lymph node (2.5cm). The real test is survival but based on my limited experience (and I hope it stays that way) I feel very good about Tomo Therapy in conjunction with Eurbitux as a treatment. I sort of feel like a pioneer using Eurbitux considering that Cisplatin has been the treatment of choice for so many years but in my opinion the short and long term side effects of Cisplatin were to much. The only side effect, and it is a very common one with Eurbitux, is an acneform rash on my face that lasted about 10 days and was cured with an oral anti-biotic. I looked like a teenager with a hundred pimples. I wish I could celebrate the closure of this stage with a steak and baked potatoe with sour cream but we all know that will have to wait for a while. Good luck and God Bless.
John

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi John
    Sounds like some very good news and very remarkable on how you did going through treatment. Like you said some very good points for Tomo Therapy indeed. Take care and you should be able to do the last week standing on your head.

    Wishing you the best of all Gods blessing
    Hondo
  • keep_the_faith
    keep_the_faith Member Posts: 49
    John
    I not only broke out on my face but also on my back and arms. I was a mess. I've been through chemo twice and today my skin is better looking than it has ever looked in my life. Radiation was a real challenge, but by gosh, we got through it. This is a time for celebration.

    Keep the faith and God Bless
  • Husker Fan
    Husker Fan Member Posts: 65
    Congratulations John...
    Great job John, our schedules are real close. My radiation goes through next week and 2 days the week after. Your description of how you feel is also real similar. I did not have chemo, but had the TORS and neck dissection surgeries. I have lost only 6 lbs. I count my blessings, especially reading some of the hardships on here that other people have had to go through.

    Congratulations and get ready for that steak and baked potato.

    David
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Steak and Potato
    Nice big porterhouse, baking potatoes (sour cream, shredded cheddar and bacon bits) and fresh asparagus are in my fridge now....

    I'll definitely think of you when I'm enjoying them tomorrow. Don't take it wrong...I have been in the same place as you, maybe even a little worse on the saliva and taste back in the day... 2 1/2 years ago, also I'm another not prescribed the PEG...there are a few of us.

    I now have 90 - 95% of both taste and saliva back now. Sooo in my thoughts, you will be back there more than likely sooner than it took me to recover.

    So hang in there, and know it will more than likely happen before you realize.

    Best,
    John
  • Hondo
    Hondo Member Posts: 6,636 Member
    Skiffin16 said:

    Steak and Potato
    Nice big porterhouse, baking potatoes (sour cream, shredded cheddar and bacon bits) and fresh asparagus are in my fridge now....

    I'll definitely think of you when I'm enjoying them tomorrow. Don't take it wrong...I have been in the same place as you, maybe even a little worse on the saliva and taste back in the day... 2 1/2 years ago, also I'm another not prescribed the PEG...there are a few of us.

    I now have 90 - 95% of both taste and saliva back now. Sooo in my thoughts, you will be back there more than likely sooner than it took me to recover.

    So hang in there, and know it will more than likely happen before you realize.

    Best,
    John

    Fish
    Keep the beef and give me fish, with that bake potato. I guess what you can taste it don’t matter what it is because it is all good.

    Hey JC man I love that picture
    Hondo
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Wow
    You are doing well. I'm currenty through my third session of Erbitux, and just had my second course of Carboplatin/Taxotere yesterday. Feel like my face is melting, LOL. I had a rapidly enlarging tumor a month ago. It is shrinking like magic, and that is the Erbitux causing it. It truly has been a great addition to the armamentarium to treat SCC. Tomotherapy wasn't done when I had my first cancer in 1998 and the treatment fields were way bigger with radiation as a result of this. In part, your relative lack of radiation side effects is because they have been able to irradiate a smaller area. It is truly all good.

    Best to you. Wish I could eat a steak. Its just too hard to chew and swallow right now.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    Wow
    You are doing well. I'm currenty through my third session of Erbitux, and just had my second course of Carboplatin/Taxotere yesterday. Feel like my face is melting, LOL. I had a rapidly enlarging tumor a month ago. It is shrinking like magic, and that is the Erbitux causing it. It truly has been a great addition to the armamentarium to treat SCC. Tomotherapy wasn't done when I had my first cancer in 1998 and the treatment fields were way bigger with radiation as a result of this. In part, your relative lack of radiation side effects is because they have been able to irradiate a smaller area. It is truly all good.

    Best to you. Wish I could eat a steak. Its just too hard to chew and swallow right now.

    Shrinking Tumor
    You might feel that the shrinkage is due solely from the Erbitux, not so sure, but whatever the reason it's a blessing for you.

    I had similar results with Cisplatin, Taxotere and 5FU, and I also had Carboplatin concurrent with radiation. But the tumor (seconday location) had already dissolved before that portion of my treatment.

    In my reading, I'm not so sure that Erbitux will be used as a frontline replacement for Cisplatin (although I have seen many on here that have had Erbitux). It looks like Erbitux is primarily used (and very effectively) as the chemo of choice for recurrence and mets diagnosis. Most of this resulted from a study in 2006 with a much better results percentage success rate than had been seen in the last 30 years since Cisplatin.

    It's nice to know that they are still making advances toward treating these diseases....especially dealing with recurrence.

    Thoughts and Prayers that the Erbitux and combination of current treatment will cure you for good.

    Best,
    John
  • osmotar
    osmotar Member Posts: 1,006
    Skiffin16 said:

    Shrinking Tumor
    You might feel that the shrinkage is due solely from the Erbitux, not so sure, but whatever the reason it's a blessing for you.

    I had similar results with Cisplatin, Taxotere and 5FU, and I also had Carboplatin concurrent with radiation. But the tumor (seconday location) had already dissolved before that portion of my treatment.

    In my reading, I'm not so sure that Erbitux will be used as a frontline replacement for Cisplatin (although I have seen many on here that have had Erbitux). It looks like Erbitux is primarily used (and very effectively) as the chemo of choice for recurrence and mets diagnosis. Most of this resulted from a study in 2006 with a much better results percentage success rate than had been seen in the last 30 years since Cisplatin.

    It's nice to know that they are still making advances toward treating these diseases....especially dealing with recurrence.

    Thoughts and Prayers that the Erbitux and combination of current treatment will cure you for good.

    Best,
    John

    I think
    I think I'm you in the mirror, only 2 1/2 years later; you and I had the exact chemo treatment and time frame, after the 2nd infusion my tumor also secondary location was determined by my onco to be gone. The rad onco said the same thing when he saw me last week. To follow you another step I'll have 39 days of rads, along with once a week infusion of carboplatin.

    Hoping to get the same results with saliva and taste, but as you all write each of us is different.

    Have a great Saturday everyone,

    Linda
  • osmotar
    osmotar Member Posts: 1,006
    Congrats
    on finishing your rad treatments, mine start on Tues,and will be for a total of 39. My rad onc is not a fan of PEG tube, but said if I loose 20% of my body weight we will discuss again, I'm crossing my fingers, kissing the blarney stony, rubbing my yard buddahs belly hoping that I won't need one either, only time will tell.

    Best wishes on your journey.

    Linda
  • jim and i
    jim and i Member Posts: 1,788 Member
    Cisplatin
    Jim had the Cisplatin twice and it effected his kidneys so they did two rounds of the Erbitux. The only side effect was the acne which was mild and mostly on his head.

    Cudos on the eating. Jim lost his taste and 40 pounds before diagnosis so had to have the PEG. 88 days out of treatment and he still can't eat or taste.

    So thankful you have had an uneventful treatment and I pray you continue to rapidly heal.

    Debbie
  • jtl
    jtl Member Posts: 456
    Skiffin16 said:

    Shrinking Tumor
    You might feel that the shrinkage is due solely from the Erbitux, not so sure, but whatever the reason it's a blessing for you.

    I had similar results with Cisplatin, Taxotere and 5FU, and I also had Carboplatin concurrent with radiation. But the tumor (seconday location) had already dissolved before that portion of my treatment.

    In my reading, I'm not so sure that Erbitux will be used as a frontline replacement for Cisplatin (although I have seen many on here that have had Erbitux). It looks like Erbitux is primarily used (and very effectively) as the chemo of choice for recurrence and mets diagnosis. Most of this resulted from a study in 2006 with a much better results percentage success rate than had been seen in the last 30 years since Cisplatin.

    It's nice to know that they are still making advances toward treating these diseases....especially dealing with recurrence.

    Thoughts and Prayers that the Erbitux and combination of current treatment will cure you for good.

    Best,
    John

    Shrinking tumor
    It may be possible that Erbitux could shrink the tumor. If the epidermal growth factor receptor is blocked the cell will not divide and grow. Like all cells, cancer cells have a specific life span and will naturally die if deprived of their growth mechanism. Seems to me that this would reduce the tumor size as the cells die off.

    In 2006 the FDA approved Erbitux as a front line treatment just like Cisplatin. That is what convinced my Onc to approve the treatment. It is also, and primarily used for recurrent disease. I suspect that is because there are limits to how much Cisplatin the body can take without serious problems.

    My Onc explained this to me. Erbitux is very expensive ($10,000 for my intitial dose according to the info my insurance company sent to me). The oncology center must front the money for the drug and wait to get paid. Many smaller practices simply cannot afford to do this. Cisplatin is relatively cheap and generic. I think he said only a few hundred dollars. Also cisplatin is an acceptable treatment and some insurancee companies are not going to pay for a newer and more expensive drug when there is a cheaper alternative that has been in use for 30 years.

    Anyway, in my case it was an option and I liked the idea of targeted therapy. In the meantime I am just trying to deicide what cut of steak to have. Porterhouse or a filet? Dog is looking over my shoulder and drooling for the porterhouse bone.

    John
  • jtl
    jtl Member Posts: 456
    osmotar said:

    Congrats
    on finishing your rad treatments, mine start on Tues,and will be for a total of 39. My rad onc is not a fan of PEG tube, but said if I loose 20% of my body weight we will discuss again, I'm crossing my fingers, kissing the blarney stony, rubbing my yard buddahs belly hoping that I won't need one either, only time will tell.

    Best wishes on your journey.

    Linda

    PEG
    I was very fortunate to be able to swallow with minimal pain so even though nothing tasted good and I was light on saliva I could drink Ensure. I used the clinical strength Ensure it is 350 calories,11g of fat,840 mg of potassium and 51 carbs in a 8oz container. I was told on several occasions up front that if I needed a PEG inorder to stay healthy enough to tollerate the treatment I was going to get one. I had no problem with that and in fact I kind of thought that would be the case. The majority of people get a PEG and some docs even put one in before treatment as a matter of policy.

    I wish you luck with your treatment and a successful outcome.
    John
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    jtl said:

    Shrinking tumor
    It may be possible that Erbitux could shrink the tumor. If the epidermal growth factor receptor is blocked the cell will not divide and grow. Like all cells, cancer cells have a specific life span and will naturally die if deprived of their growth mechanism. Seems to me that this would reduce the tumor size as the cells die off.

    In 2006 the FDA approved Erbitux as a front line treatment just like Cisplatin. That is what convinced my Onc to approve the treatment. It is also, and primarily used for recurrent disease. I suspect that is because there are limits to how much Cisplatin the body can take without serious problems.

    My Onc explained this to me. Erbitux is very expensive ($10,000 for my intitial dose according to the info my insurance company sent to me). The oncology center must front the money for the drug and wait to get paid. Many smaller practices simply cannot afford to do this. Cisplatin is relatively cheap and generic. I think he said only a few hundred dollars. Also cisplatin is an acceptable treatment and some insurancee companies are not going to pay for a newer and more expensive drug when there is a cheaper alternative that has been in use for 30 years.

    Anyway, in my case it was an option and I liked the idea of targeted therapy. In the meantime I am just trying to deicide what cut of steak to have. Porterhouse or a filet? Dog is looking over my shoulder and drooling for the porterhouse bone.

    John

    Mentioned Above
    I believe I mentioned some of that above.....

    I never said that Erbitus couldn't shrink the tumor, I just said I didn't believe that it was solely responsible, as Cisplatin was one of the chemo drugs that I had, and the secondary tumor I had also dissolved away.

    It's not just anacceptable chemo drug, it's a proven chemo drug. After all, it's been still being used 33 years after it was approved by the FDA in 1978.

    I also mentioned the 2006 study...

    Erbitux is the trade name for the generic chemotherapy drug Cetuximab...most everything is generic these days, or has a generic name.

    It seems there are around five or sixmain chemo drugs being used for H&N cancer;

    Cisplatin
    Carboplatin
    Erbitux
    Fluorouracil (5-FU)
    Taxotere

    I know there have been a few others mentioned that escape me for the moment.

    Point being that there is no definite cure all...some have pros, some have cons...they all work to some degree, and it seems to have been concluded they work best in combinations of scenarios and different individuals.

    Best,
    JG
  • jtl
    jtl Member Posts: 456
    Skiffin16 said:

    Mentioned Above
    I believe I mentioned some of that above.....

    I never said that Erbitus couldn't shrink the tumor, I just said I didn't believe that it was solely responsible, as Cisplatin was one of the chemo drugs that I had, and the secondary tumor I had also dissolved away.

    It's not just anacceptable chemo drug, it's a proven chemo drug. After all, it's been still being used 33 years after it was approved by the FDA in 1978.

    I also mentioned the 2006 study...

    Erbitux is the trade name for the generic chemotherapy drug Cetuximab...most everything is generic these days, or has a generic name.

    It seems there are around five or sixmain chemo drugs being used for H&N cancer;

    Cisplatin
    Carboplatin
    Erbitux
    Fluorouracil (5-FU)
    Taxotere

    I know there have been a few others mentioned that escape me for the moment.

    Point being that there is no definite cure all...some have pros, some have cons...they all work to some degree, and it seems to have been concluded they work best in combinations of scenarios and different individuals.

    Best,
    JG

    Generic
    By generic I meant generic equivalent not the scientific name. Erubitux is still under patent so there is no generic equivalent and no competition to drive down the price. Sorry for any confusion.

    Regards,
    John
  • Hondo
    Hondo Member Posts: 6,636 Member
    Skiffin16 said:

    Mentioned Above
    I believe I mentioned some of that above.....

    I never said that Erbitus couldn't shrink the tumor, I just said I didn't believe that it was solely responsible, as Cisplatin was one of the chemo drugs that I had, and the secondary tumor I had also dissolved away.

    It's not just anacceptable chemo drug, it's a proven chemo drug. After all, it's been still being used 33 years after it was approved by the FDA in 1978.

    I also mentioned the 2006 study...

    Erbitux is the trade name for the generic chemotherapy drug Cetuximab...most everything is generic these days, or has a generic name.

    It seems there are around five or sixmain chemo drugs being used for H&N cancer;

    Cisplatin
    Carboplatin
    Erbitux
    Fluorouracil (5-FU)
    Taxotere

    I know there have been a few others mentioned that escape me for the moment.

    Point being that there is no definite cure all...some have pros, some have cons...they all work to some degree, and it seems to have been concluded they work best in combinations of scenarios and different individuals.

    Best,
    JG

    Generic or Not
    We just about all depend on our doctors to determine what drugs we need to fight our cancer. They are the ones who have studied to see what is best for what type of cancer but even then sometimes we are so different that what works on one will not work on someone else. I don’t know if there is much different between some Generic drugs or not but I do know sometimes the Generic don’t work as good as the name brand.

    Hondo