MY FIRST APPOINTMENT WITH RAD. ONC. DOC

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We really like the doctor today. I was originally going to get a second consult at Mayo but now I don't know if I should even bother. Loved the doc and the staff, the facility is convenient and, quite honestly, from being on here I knew what to expect as far as treatment protocol. SInce I am dealing with something that isn't truly out of the ordinary, do you think I still need another consultation elsewhere? (The facility I went to was the Williams Cancer Center at Baptist Hospital in Jacksonville, FL. The Florida Radiology and Oncology Group.)

A couple of points:

1. I asked about getting the PEG before treatments starts. Doc said she prefers not to do it preemptively because the important thing is to continue swallowing as long as possible and her fear is that it will be used as a crutch. She also said that she is very proactive in recognizing when it is the right time to have the PEG (inserted? installed? whatever lol) I kind of get what she is saying. Having said that, according to my BMI, i could lose 40 pounds and be in a good weight range. SO i have some cushion (hahaha). She also mentioned that many of her patients make it through the entire series of treatment without needing PEG. My biggest concern with all of this is not wanting to lose my swallowing. Thoughts?

2. She sent a message to the chemo doc to discuss my eligibility for the Erbitux trial. I know some of you have had the Erbitux. I would love to hear about this...

Thanks!

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    Sounds like you have a plan
    I canceled my appointment at MDAnderson in Houston after meeting an oncologist who impressed me at a lesser named facility. I have had no regrets. Having been through rads twice II have never needed a PEG tube. Not even close. Many of us have had erbitux, as it is commonly given in advance of, and during rads. Sounds like you have a plan.
  • Sam999
    Sam999 Member Posts: 319 Member
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    Sounds like you have a plan
    I canceled my appointment at MDAnderson in Houston after meeting an oncologist who impressed me at a lesser named facility. I have had no regrets. Having been through rads twice II have never needed a PEG tube. Not even close. Many of us have had erbitux, as it is commonly given in advance of, and during rads. Sounds like you have a plan.

    I would say still go for 2nd
    I would say still go for 2nd opinion. I am MKSCC (memorial sloan kettering) which is one of the top 10 in USA but still i think atleast i should have pursued other options. There is new stuff like proton therapy, tobo therapy or something like that. Make sure you are not one of the cndidates for that. For me no one even mentioned those! I thought by going to MKSCC, i pretty much will be covered for all but that did not see to be the case.

    Also each facility have many machines, some old, some new. I am put on one of the older ones since mine is less complicated case. I personally would hae liked to be put on a newer machine. Some newer machines like rapidarc reduces radiation time in half which is a big blessing when you under a mask and i believe they are more precise.

    Make sure you ask which machines they have and which one are they going to put you on.
  • Sam999
    Sam999 Member Posts: 319 Member
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    Sam999 said:

    I would say still go for 2nd
    I would say still go for 2nd opinion. I am MKSCC (memorial sloan kettering) which is one of the top 10 in USA but still i think atleast i should have pursued other options. There is new stuff like proton therapy, tobo therapy or something like that. Make sure you are not one of the cndidates for that. For me no one even mentioned those! I thought by going to MKSCC, i pretty much will be covered for all but that did not see to be the case.

    Also each facility have many machines, some old, some new. I am put on one of the older ones since mine is less complicated case. I personally would hae liked to be put on a newer machine. Some newer machines like rapidarc reduces radiation time in half which is a big blessing when you under a mask and i believe they are more precise.

    Make sure you ask which machines they have and which one are they going to put you on.

    Forgot to mention, i also do
    Forgot to mention, i also do not have a PEG. My doc has the same reasoning as you. And i too like you have about 30 pounds i can afford or even like to lose :)

    I think docs know we will make it thru without peg becuase of the extra weight we have to lose.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Plan Sounds Good X2
    Like Pat, I think your plan sounds good sticking with the MD and facility at Jacksonville.

    You love the facility, staff, and loaction...all of those are huge for treatment and recovery.

    I also had no PEG without any issues, and like both Sam and you (generously nurished), I had a few extra pounds to spare. The PEG was mentioned for awareness and like you was always on the table if needed...never was, not even close like Pat mentioned.

    So I thing you have a good plan going in...

    Best,
    John
  • osmotar
    osmotar Member Posts: 1,006
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    Starting
    Like you from the moment I met both my onco md and my rad doc I liked them both..I think thats part of dealing with treatment. As others mentioned, I didn't have a PEG either, my rad doc isn't in favor of them , BUT ..he also said I had to maintain a certain caloric intake to stay healthy and maintain muscle mass, he also didn't want me to lose more than 22-3 lbs per week, my rads lasted 7.5 weeks, they wanted to see more along the lines of 2lbs per week..I did lose 40lbs thru the process though, but I had extra weight to get gone anyway. I ate whether I could taste certain things or not, added supplements of boost or ensure, and continued to stay hydrated with 2-3 qts of water a day, plus the food police , my sister & niece were here to keep any eye on me :) . I was lucky to not experience any mouth sores , by using salt/baking soda, as well as a script for caphosol, and no problems with swallowing either.

    Hope all goes well for you.

    Linda
  • phrannie51
    phrannie51 Member Posts: 4,716
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    If you're comfortable where you're at....
    and from being on here, you've heard what other people have gotten for treatment and know your treatment plans are within the protocols...then maybe skip a second opinion. I was going to get one from MD Anderson, but the protocol up here in po-dunk Montana followed the same as what MD Anderson was giving....except I could get Amifostine here, and couldn't get it down in Houston (a plus for me). We have the IMRT rad machine, also...so that part wouldn't be different in Houston, either. I'm happy I stayed home for treatment.

    As for the pre-emptive PEG Tube, everybody differs on those. I had no weight to lose at all, not even 10 lbs so I did get one. I have used it only for practice, and during the first couple of days after chemo. I prefer to eat my food :), but also have had very little so far in the way of a sore throat. I too want my swallow-er to work at the end of this treatment. I'm glad I had it put in tho, cuz it wasn't quite as smooth as it was for others, and I was in a lot of pain for several days after. Just keep in mind that this isn't Jenny Craig, and you don't want to start losing weight rapidly....you NEED the calories to heal quicker.

    DO ASK your oncologist about MuGuard, tho, before you start rads...some Drs. seem reluctant to prescibe it, others like mine go ahead and prescibe it with the warning that it might not work. There are a few of us on here who will attest that it DOES work, and the earlier you start it, the better off you are, as far as radiation induced mouth sores go....I had one sore, cured it with L-Glutamine, and have used MuGuard faithfully since, and have had NONE since. It's a preventative, rather than a cure...and as far as I'm concerned it works!!

    Have they mentioned Amifostine to you? You might want to ask about it, also (your Oncologist)...it's supposed to save your saliva glands from the rads...some say it works, some say it's not proven, and some say it's too hard on a patient who's already going thru everything else. John (Skiffin) says it keeps the mucous at bay, as well as the above. I have NO mucous to speak of at all (10 rads left to go)...so would assume that it's the amifostine working for that.

    I'm not getting Erbitux, but know many on here have had it...

    p
  • CajunEagle
    CajunEagle Member Posts: 408
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    Well,
    glad you seem to like your treatment team, but it wouldn't be that big of a deal to drive over on San Pablo Road and get a look around or 2nd opinion at the Mayo Clinic of Jacksonville. Nice place.

    Larry
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    Erbitux for me
    Tuffenuff,

    I did have the PEG tube, Two of them, one lousy and one terrific. I never quit swallowing and probably could have made it through drinking my meals. It did make it easy to feed me, just hook me up.

    The one thing about losing weight that bothered me was that some people had to get a new mask. That alone kept my weight pretty constant.

    I did use Erbitux, one loading dose and seven normal infusions (every Friday after radiation). My upper torso broke out with a pimple like rash. The rash looked itchy but wasn’t (everyone asked “does it itch”). I am 10 weeks post and the rash is still visible (some what), but you can not feel it, it is not bumpy. Also, the rash got on my face but was never embarrassingly bad.

    Now soundguy51 (on here) mentioned Erbitux being hard on the heart, well I did not read that until after it was all over. The chemo onc had my blood tested weekly and each test was fine (all levels in the good zone and ready for Erbitux).

    Matt
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    CivilMatt said:

    Erbitux for me
    Tuffenuff,

    I did have the PEG tube, Two of them, one lousy and one terrific. I never quit swallowing and probably could have made it through drinking my meals. It did make it easy to feed me, just hook me up.

    The one thing about losing weight that bothered me was that some people had to get a new mask. That alone kept my weight pretty constant.

    I did use Erbitux, one loading dose and seven normal infusions (every Friday after radiation). My upper torso broke out with a pimple like rash. The rash looked itchy but wasn’t (everyone asked “does it itch”). I am 10 weeks post and the rash is still visible (some what), but you can not feel it, it is not bumpy. Also, the rash got on my face but was never embarrassingly bad.

    Now soundguy51 (on here) mentioned Erbitux being hard on the heart, well I did not read that until after it was all over. The chemo onc had my blood tested weekly and each test was fine (all levels in the good zone and ready for Erbitux).

    Matt

    I forgot to tell you
    tuffenuff,

    One other thing about Erbitux, my eye lashes are getting longer, to the point it bugs me when driving. Also, eye brows getting a little bushier and finally my belly (embarrassment here) is getting hairier. Now I am a man, so that is probably why my stomach area. Even my PEG tube navel is hairy. I feel so silly, but you asked.

    Keep smiling,

    Matt
  • miccmill
    miccmill Member Posts: 248
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    CivilMatt said:

    I forgot to tell you
    tuffenuff,

    One other thing about Erbitux, my eye lashes are getting longer, to the point it bugs me when driving. Also, eye brows getting a little bushier and finally my belly (embarrassment here) is getting hairier. Now I am a man, so that is probably why my stomach area. Even my PEG tube navel is hairy. I feel so silly, but you asked.

    Keep smiling,

    Matt

    Baptist Hospitals
    So glad you had a good appointment with your Rad/Onc.

    I don't think it would hurt at all to have a second opinion. You may hear exactly the same thing but you'll know that everyone is using the most current standards of care.

    The Baptist Hospital system in Florida is very well thought of. I work in a University Hospital system and we've been down to Jacksonville to learn a thing or two over the years.

    I talked them into placing a PEG tube for Glenn, before the treatment began. He did need it but I also hovered over him making sure he swallowed throughout the day so no exceptional swallowing difficulties after he recovered from treatment.

    Best of luck in your journey to wellness.
  • phrannie51
    phrannie51 Member Posts: 4,716
    Options
    CivilMatt said:

    I forgot to tell you
    tuffenuff,

    One other thing about Erbitux, my eye lashes are getting longer, to the point it bugs me when driving. Also, eye brows getting a little bushier and finally my belly (embarrassment here) is getting hairier. Now I am a man, so that is probably why my stomach area. Even my PEG tube navel is hairy. I feel so silly, but you asked.

    Keep smiling,

    Matt

    LOL Matt....
    Since I've been on here, I've read that some women are having tube feedings in order to fit into their Wedding dresses.......now we'll have women requesting Erbitux to grow their eyelashes...ha! What's a little belly hair when they can bat those long, come-hither lashes!

    p
  • tuffenuff
    tuffenuff Member Posts: 277
    Options
    Sam999 said:

    I would say still go for 2nd
    I would say still go for 2nd opinion. I am MKSCC (memorial sloan kettering) which is one of the top 10 in USA but still i think atleast i should have pursued other options. There is new stuff like proton therapy, tobo therapy or something like that. Make sure you are not one of the cndidates for that. For me no one even mentioned those! I thought by going to MKSCC, i pretty much will be covered for all but that did not see to be the case.

    Also each facility have many machines, some old, some new. I am put on one of the older ones since mine is less complicated case. I personally would hae liked to be put on a newer machine. Some newer machines like rapidarc reduces radiation time in half which is a big blessing when you under a mask and i believe they are more precise.

    Make sure you ask which machines they have and which one are they going to put you on.

    You make a good point about
    You make a good point about newer machines. I will ask for sure.

    As far as proton therapy, I'm being told the one center in my town has no protocol for tonsil cancer and I can't get mayo to return my call. Doc yesterday said she wouldn't recommend it because they didn't get all of the tumor when they removed my tonsil and the proton therapy is pretty precisely focused, would be great if I had a contained tumor like at base of skull or something. But she described my tonsil mess as growing kind of like moss covering a stone. Pretty spread out. I was hoping for proton. Still gonna make a call Monday.
  • tuffenuff
    tuffenuff Member Posts: 277
    Options
    Skiffin16 said:

    Plan Sounds Good X2
    Like Pat, I think your plan sounds good sticking with the MD and facility at Jacksonville.

    You love the facility, staff, and loaction...all of those are huge for treatment and recovery.

    I also had no PEG without any issues, and like both Sam and you (generously nurished), I had a few extra pounds to spare. The PEG was mentioned for awareness and like you was always on the table if needed...never was, not even close like Pat mentioned.

    So I thing you have a good plan going in...

    Best,
    John

    That is awesome. It seems
    That is awesome. It seems like there are a lot of stories about people requiring peg. I just had my tonsil removed and never had any pain. I'm hoping I'm pretty tough.
  • tuffenuff
    tuffenuff Member Posts: 277
    Options
    osmotar said:

    Starting
    Like you from the moment I met both my onco md and my rad doc I liked them both..I think thats part of dealing with treatment. As others mentioned, I didn't have a PEG either, my rad doc isn't in favor of them , BUT ..he also said I had to maintain a certain caloric intake to stay healthy and maintain muscle mass, he also didn't want me to lose more than 22-3 lbs per week, my rads lasted 7.5 weeks, they wanted to see more along the lines of 2lbs per week..I did lose 40lbs thru the process though, but I had extra weight to get gone anyway. I ate whether I could taste certain things or not, added supplements of boost or ensure, and continued to stay hydrated with 2-3 qts of water a day, plus the food police , my sister & niece were here to keep any eye on me :) . I was lucky to not experience any mouth sores , by using salt/baking soda, as well as a script for caphosol, and no problems with swallowing either.

    Hope all goes well for you.

    Linda

    Thanks for sharing your
    Thanks for sharing your experience. I love hearing these positive stories!
  • tuffenuff
    tuffenuff Member Posts: 277
    Options

    If you're comfortable where you're at....
    and from being on here, you've heard what other people have gotten for treatment and know your treatment plans are within the protocols...then maybe skip a second opinion. I was going to get one from MD Anderson, but the protocol up here in po-dunk Montana followed the same as what MD Anderson was giving....except I could get Amifostine here, and couldn't get it down in Houston (a plus for me). We have the IMRT rad machine, also...so that part wouldn't be different in Houston, either. I'm happy I stayed home for treatment.

    As for the pre-emptive PEG Tube, everybody differs on those. I had no weight to lose at all, not even 10 lbs so I did get one. I have used it only for practice, and during the first couple of days after chemo. I prefer to eat my food :), but also have had very little so far in the way of a sore throat. I too want my swallow-er to work at the end of this treatment. I'm glad I had it put in tho, cuz it wasn't quite as smooth as it was for others, and I was in a lot of pain for several days after. Just keep in mind that this isn't Jenny Craig, and you don't want to start losing weight rapidly....you NEED the calories to heal quicker.

    DO ASK your oncologist about MuGuard, tho, before you start rads...some Drs. seem reluctant to prescibe it, others like mine go ahead and prescibe it with the warning that it might not work. There are a few of us on here who will attest that it DOES work, and the earlier you start it, the better off you are, as far as radiation induced mouth sores go....I had one sore, cured it with L-Glutamine, and have used MuGuard faithfully since, and have had NONE since. It's a preventative, rather than a cure...and as far as I'm concerned it works!!

    Have they mentioned Amifostine to you? You might want to ask about it, also (your Oncologist)...it's supposed to save your saliva glands from the rads...some say it works, some say it's not proven, and some say it's too hard on a patient who's already going thru everything else. John (Skiffin) says it keeps the mucous at bay, as well as the above. I have NO mucous to speak of at all (10 rads left to go)...so would assume that it's the amifostine working for that.

    I'm not getting Erbitux, but know many on here have had it...

    p

    I did ask about amifostine
    I did ask about amifostine but she said she usually doesn't recommend it because it seems to cause extreme nausea in more patients than not. She seems to think my saliva gland on the other side will be ok but it is a little scary.
  • tuffenuff
    tuffenuff Member Posts: 277
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    Well,
    glad you seem to like your treatment team, but it wouldn't be that big of a deal to drive over on San Pablo Road and get a look around or 2nd opinion at the Mayo Clinic of Jacksonville. Nice place.

    Larry

    I can't seem to get a return
    I can't seem to get a return call. Ive been trying for two weeks. I'm really surprised actually. Maybe I will drive over there Monday.
  • tuffenuff
    tuffenuff Member Posts: 277
    Options
    CivilMatt said:

    I forgot to tell you
    tuffenuff,

    One other thing about Erbitux, my eye lashes are getting longer, to the point it bugs me when driving. Also, eye brows getting a little bushier and finally my belly (embarrassment here) is getting hairier. Now I am a man, so that is probably why my stomach area. Even my PEG tube navel is hairy. I feel so silly, but you asked.

    Keep smiling,

    Matt

    If I get a hairy belly I
    If I get a hairy belly I will invest in an at home electrolysis device lol! A small price to pay... And I was always intrigued with Andy Rooneys eyebrows. This may work out better than expected!
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    tuffenuff said:

    That is awesome. It seems
    That is awesome. It seems like there are a lot of stories about people requiring peg. I just had my tonsil removed and never had any pain. I'm hoping I'm pretty tough.

    Amifostine...
    Sorry about all of the spelling errors above, LOL...on vacation, must have been earlier than I thought.

    I also had Amifostine as did others.. It does come with a few side effects, itchy red welts at the injection site for me. Then around 32 out of 35 I had to stop them because I was getting extreme fevers.

    But overall, I do feel they helped as I never got the thick ropey phlegm many speak of, that's why my chemo MD prescribed them. Plus the added benefit of possibly regaining a little more salivary function.

    Now at three years post treatment, I have around 95% saliva back and 100% taste.

    Good deal on no pain with your tonsils coming out. For me I think while much shorter in duration, that hurt worse than the radiation.

    I also over all lost around 42#, but still topped out at 230# after treatment and 6' tall.

    So I wasn't in any danger of wasting away very quickly, LOL...

    Best,
    John
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    tuffenuff said:

    If I get a hairy belly I
    If I get a hairy belly I will invest in an at home electrolysis device lol! A small price to pay... And I was always intrigued with Andy Rooneys eyebrows. This may work out better than expected!

    Tuff...
    ...you mentioned the Erbitux trial ...but in lieu of getting standard chemor drugs or in addtion?

    I feel somewhat jealous I was not told about traditional chemo drugs...just told Erbitux ...and I did not get those daily injections I hear about on here to help with saliva glands ...???

    I did have the peg tube at the beginning ....good thing I did. I lost 70lbs during treatments...they did ask if I wanted at the begining ...they suggested I do...so I did.

    I am rare..so don't worry about this for you ...but I did have a severe reaction to the Erbitux per my onc..one of the worst...they stopped Erbitux one time and then resumed ....I had the WORST acne and rash ...head to waist ...looked morbid....did not like to go out in public..but again, my reaction was rare.

    Sounds like you have a great plan...never hurts to get a 2nd in case you hear something you can ask the clinic you want to have treatments at...

    Best,

    Tim