First Onocological Appointment - what questions should we ask?

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laurie83833
laurie83833 Member Posts: 63
edited March 2014 in Colorectal Cancer #1
Well, we knew it was going to come sooner or later the Onocological Appointment. Dennys appointment is scheduled for Monday at 12:30 the clinic called today. We will arrive about an hour early to get some test done. Even though we expected the phone call eventually - we hated that it actually did as it confirmed no this hasn't been a bad dream it is not going to go away.

It was a beautiful morning - we both felt good, happy, bubbly relaxed for the first time in weeks made plans to spent Saturday Night at the casinos hotel - do some gambling, a friend of ours is playing music up there was going to listen to him play. My husband Denny by the way is a musician also in his spare time.

Then WHAM the dreaded phone call. Instant depression! Denny didn't want to go anywhere after that phone call, neither did I at first then I picked myself back up .. and eventually did talk him into going and that we cannot let this thing run our lives. So we are going!

Anyrate for the appointment Monday I assume is when he will get the actual stage of the cancer and they will go over treatment options at that time.
Questions I have for you (fellow members)

1:)What type of test will they be doing on Monday? I think he said blood test and then it sounded like "and a couple other" but he did not specify. I know you cannot say for sure but is there like some like standard test they do prior?

2:) What questions after we get the results and they offer adjucent (spelling sorry) treatments. Should we ask about what kind? Side effects, how long will the treatments last etc?

This is just all so new for the both of us - just would like to be a little prepared so that we can understand everything or try to anyways.

The Surgeon said Stage IB (but I don't hold what he said with a high feeling as he didn't seem very sure himself and acted stunned when I asked him about stages) - I on the other hand by all my research and just by what the Surgeon said about contained in fatty tissue but not outside colon - would venture to say Stage IIa but more then likely Stage IIb but not stage III due to no lympth node involment, but that is just my own evaluation.

Anyrate any advice on what type of questions I should ask would be much appreciated.

Thank you and have a wonderful weekend everyone.
Laurie
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Comments

  • Patteee
    Patteee Member Posts: 945
    Options
    yep, you are in the lows of
    yep, you are in the lows of the Cancer Shock. I am glad you are forcing yourselves out of the lows- you will get through this, one step at a time. Monday will come soon enough. In the meantime, there is Friday evening, all day Saturday and all day Sunday. I think your attitude is great and it sounds like a fun weekend planned!

    The only suggestion I have for the Monday meeting, when will the PET scan be done. That is part of the staging and does help confirm lymph node involvement as well as other organs.
  • laurie83833
    laurie83833 Member Posts: 63
    Options
    Patteee said:

    yep, you are in the lows of
    yep, you are in the lows of the Cancer Shock. I am glad you are forcing yourselves out of the lows- you will get through this, one step at a time. Monday will come soon enough. In the meantime, there is Friday evening, all day Saturday and all day Sunday. I think your attitude is great and it sounds like a fun weekend planned!

    The only suggestion I have for the Monday meeting, when will the PET scan be done. That is part of the staging and does help confirm lymph node involvement as well as other organs.

    Is PET the same as CT?
    Hi Patte:

    Is PET the same as CT scan? He had a CT scan, chest Exrays, blood work all prior to surgery and at that time they said showed no involment to liver, chest clear, blood came back good. After surgery took more blood (they said came back good) and when he had staples removed the surgeon said 0/20 lympth nodes and all came back clear, he said during surgery he checked liver and he said it looked good.

    So should I ask in the meeting "When will the PET scan be done?" or do you think this is one of the test they will do Monday before the meeting they said come in an hour early for tests. Thank you, this is all so new to us we feel lost.
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    Options
    No PET scan
    Many people never have a PET scsn. Since there was no lymph node involvement, I don't think a PET scan would be done. CT and PET are two very different type scans.

    Hubby will get a CBC and SMA 24 type test for baseline values. In fact, he'll have blood work before every chemo tx.

    He'll most probably be put on FOLFOX every two weeks for 12 treatments. He'll wear home a 'pump' for 46 hours. I completed my 12th treatment two months ago. :o)

    Diane
  • Patteee
    Patteee Member Posts: 945
    Options

    Is PET the same as CT?
    Hi Patte:

    Is PET the same as CT scan? He had a CT scan, chest Exrays, blood work all prior to surgery and at that time they said showed no involment to liver, chest clear, blood came back good. After surgery took more blood (they said came back good) and when he had staples removed the surgeon said 0/20 lympth nodes and all came back clear, he said during surgery he checked liver and he said it looked good.

    So should I ask in the meeting "When will the PET scan be done?" or do you think this is one of the test they will do Monday before the meeting they said come in an hour early for tests. Thank you, this is all so new to us we feel lost.

    the PET is specific to
    the PET is specific to cancer- depending on your clinic they may not even have the machine there to do it. I want to say it is a radioactive sugar dye they inject in you, make you wait quietly for like an hour, then do the imaging. The images "light up" where cancer is. It is pretty standard in staging the cancer, so yes, think if the oncologist does not mention it, then you should.
  • laurie83833
    laurie83833 Member Posts: 63
    Options
    Patteee said:

    the PET is specific to
    the PET is specific to cancer- depending on your clinic they may not even have the machine there to do it. I want to say it is a radioactive sugar dye they inject in you, make you wait quietly for like an hour, then do the imaging. The images "light up" where cancer is. It is pretty standard in staging the cancer, so yes, think if the oncologist does not mention it, then you should.

    Learning
    Thank you - now I know the difference. And even if they don't think he needs a PET scan I will ask about if they will be doing one.

    Have a nice weekend!
  • laurie83833
    laurie83833 Member Posts: 63
    Options

    No PET scan
    Many people never have a PET scsn. Since there was no lymph node involvement, I don't think a PET scan would be done. CT and PET are two very different type scans.

    Hubby will get a CBC and SMA 24 type test for baseline values. In fact, he'll have blood work before every chemo tx.

    He'll most probably be put on FOLFOX every two weeks for 12 treatments. He'll wear home a 'pump' for 46 hours. I completed my 12th treatment two months ago. :o)

    Diane

    So Blood work...
    K so some blood work for Monday that don't seem to bad. I wonder if they will start him on treatments that day or do they give you time to think about it first?

    Have a great weekend Diane. I read your about me and your expressions page. (Very nice BTW). I will get ours done once things settle down here. My husband creates some beautiful orchestrated peaceful music that I want to see if I can upload for you all to enjoy. My sister used to love to listen to his music on head phones when she was having her chemo treatments at Tulsa Cancer Institute. She also gave a few of his CD to the Institute for others to listen while they were having their treatments. Unfortunatly my sister lost her battle with Stage IV breast cancer 2 years ago this past June. Her name is/was Diane also.. so I like your name it has a special spot in my heart!

    Laurie
  • AceSFO
    AceSFO Member Posts: 229
    Options
    First Appointment
    Hi, Laurie,

    I'm so sorry to hear about your husband's diagnosis. My partner was Dx'd back in Oct of 2007, and I know what you're going through. His approach has been right from that start, that you can't change the diagnosis, but you can change the way you experience it.

    Our approach was to write up a list of questions first, which he would ask and I would take notes on the answers. We started a notebook for this and also collected business cards from the doctors and nurses who we would be involved with. You didn't give much detail about his particular situation, but maybe some general questions would be; what sort of treatment is typical - and what are the side effects - how is it administered? Are there any alternative treatments that would be worth looking into? How long will the treatment last? Will surgery be necessary? John recently had "cyber knife" treatments which are fairly new. Depending on Denny's cancer, you might ask if that is an option. It's painless and free from side effects.
    There's also a new method for administering chemo that was recently approved by the FDA and should be available soon, if not already. I posted about it on the "Caregivers" forum about a month ago - it should be easy to find if you scroll through those postings - it doesn't get much activity unfortunately. Ask about that if it seems like that would be an option for him. Also ask about Dendritic cell immunotherapy. Another new form of treatment without side effects or pain.

    I guess that's a start. Good think you found this board! The people on here are warm and welcoming and they'll make you feel like part of the family right away. Also there's a useful glossary of cancer terms and abbreviations that someone posted on this forum. I'll see if I can find it and bump it to the top.

    I recently finished a great book about dealing with any serious illness as a couple. Written by a husband and wife team, it tells the story of how they took on his metastatic melanoma together. He was diagnosed with the metastatic melanoma with 2 brain tumors and lymph involvement. 10 years later he's doing great and writing about the experience. If you're interested, it's called The Power of Two by Gerri and Brian Monaghan. It's about $15 on Amazon. It also gives a really useful list of 50 tips for caregivers. I wish I had found it when we started our journey 2 years ago.

    Hope this helps, and good luck on Monday - we'll be thinking about you and hoping it goes well.

    Adrian
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    Options
    Hi Laurie,you can ask
    Hi Laurie,you can ask oncologist to make sure which stage Denny is really at and don't forget to ask a copy of the pathology report.

    If the adjuvant chemo is suggested,you can ask doctor:
    1,How will the chemo be given?
    2,What supportive medication do you recommend and how should I take them to treat any side effects?
    3,what symptoms would you be concerned about?which ones should result in a phone call or emergency room evaluation?
    4,what kind of follow up do I need after adjuvant chemo is over?

    Good luck to you with the oncologist visit.Take care.
  • Shayenne
    Shayenne Member Posts: 2,342
    Options

    Hi Laurie,you can ask
    Hi Laurie,you can ask oncologist to make sure which stage Denny is really at and don't forget to ask a copy of the pathology report.

    If the adjuvant chemo is suggested,you can ask doctor:
    1,How will the chemo be given?
    2,What supportive medication do you recommend and how should I take them to treat any side effects?
    3,what symptoms would you be concerned about?which ones should result in a phone call or emergency room evaluation?
    4,what kind of follow up do I need after adjuvant chemo is over?

    Good luck to you with the oncologist visit.Take care.

    Hello!!
    Hey Laurie and Denny! Welcome to our wonderful family! We try to be as helpful as we can here, we can laugh, argue, (not too much!), cry and vent, hopefully have more laughs though!

    I totally encourage you to go away this weekend, and have a blast, don't let cancer make you stop doing the things you love, cancer doesn't have that power, make sure you have as much fun as possible! I know it's hard with it on your minds right now, but it will get better, and you both will start wanting to just get the treatments and kill that piece of crap cancer! I hope you both have fun.

    I always forget to ask the onc questions, but I'd definitely ask what the others have said, and hopefully he will get a port to administer the chemo through, it's heaven sent, instead of getting it through your veins, it goes through this drum-like thing that is implanted usually on your left or right collarbone.

    Make sure you ask about pain meds, and side effects, anti-nausea meds, and what to expect after the disconnect of the pump should he get one. It's kind of hard to think of what to say when we don't know exactly what he's getting, but you know we're here for you when you come back from you spectacular weekend, to give us more info when you find out.

    His music sounds lovely, and I can't wait to listen to it, I love all kinds of music (except country, sorry folks!) but, I'm also a metalhead. I love progressive rock where they even put orchestral and rock music together, like the band Kamelot, his voice is so lovely! I look forward to hearing Denny's music as well!

    Glad you came by to the house here, and hope you keep on coming, have fun, and don't let the cancer overcome you! it doesn't have that power...prayers and positive thoughts coming your way!

    Hugsss!
    ~Donna
  • jakesman
    jakesman Member Posts: 33
    Options
    Not sure about this, and
    Not sure about this, and maybe you guys can back me up, but everything I've read points to Stage I/II having excellent prognoses, am I right? If so, this cancer thing will be a thing of the past soon!
  • laurie83833
    laurie83833 Member Posts: 63
    Options
    AceSFO said:

    First Appointment
    Hi, Laurie,

    I'm so sorry to hear about your husband's diagnosis. My partner was Dx'd back in Oct of 2007, and I know what you're going through. His approach has been right from that start, that you can't change the diagnosis, but you can change the way you experience it.

    Our approach was to write up a list of questions first, which he would ask and I would take notes on the answers. We started a notebook for this and also collected business cards from the doctors and nurses who we would be involved with. You didn't give much detail about his particular situation, but maybe some general questions would be; what sort of treatment is typical - and what are the side effects - how is it administered? Are there any alternative treatments that would be worth looking into? How long will the treatment last? Will surgery be necessary? John recently had "cyber knife" treatments which are fairly new. Depending on Denny's cancer, you might ask if that is an option. It's painless and free from side effects.
    There's also a new method for administering chemo that was recently approved by the FDA and should be available soon, if not already. I posted about it on the "Caregivers" forum about a month ago - it should be easy to find if you scroll through those postings - it doesn't get much activity unfortunately. Ask about that if it seems like that would be an option for him. Also ask about Dendritic cell immunotherapy. Another new form of treatment without side effects or pain.

    I guess that's a start. Good think you found this board! The people on here are warm and welcoming and they'll make you feel like part of the family right away. Also there's a useful glossary of cancer terms and abbreviations that someone posted on this forum. I'll see if I can find it and bump it to the top.

    I recently finished a great book about dealing with any serious illness as a couple. Written by a husband and wife team, it tells the story of how they took on his metastatic melanoma together. He was diagnosed with the metastatic melanoma with 2 brain tumors and lymph involvement. 10 years later he's doing great and writing about the experience. If you're interested, it's called The Power of Two by Gerri and Brian Monaghan. It's about $15 on Amazon. It also gives a really useful list of 50 tips for caregivers. I wish I had found it when we started our journey 2 years ago.

    Hope this helps, and good luck on Monday - we'll be thinking about you and hoping it goes well.

    Adrian

    Some good things to ask about.
    Thank you - Adrian:

    You gave some wonderful insights on some new treatments to ask about.

    As far as history:

    Denny went in

    Sept 18 for colonoscopy as part of his physical since he was over 50
    Found 4.5cm mass in asending colon. Same day he had blood work and CT scan done. Suggested Surgery needed to remove mass.

    Sept. 21 - met with Surgeons - Said CT scan looked good no signs of spreading to liver, he previously had chest Xrays about a week before the colonosocpy and those came back cleam also, Blood work also good.

    Sept 28th Surgery right-hemicolotomy - no colostomy needed - about 12 inches removed, cecum & asending colon removed. In hospital for 6 days. Surgeon said Surgery went well and as far as he could tell had not spread said he checked liver during surgery also and it looked fine.

    Oct. 7th Staples removed - Pathological report came back - surgeon said if he was to stage would be stage I - 0/20 nodes tested all clear - tumor was contained inside colon but did enter fatty tissue so pathological report would go infront of onocological board for review to see if further treatment required due to tumor entering fatty tissue. I said if in fatty tisue you mean more like stage II and he said no like maybe Stage IB. Well I don't think there is a stage IB and from all my research if in fatty tissue is Stage IIa or IIb. I'm not Dr. so just guessing by my own reasearch. Denny lost 14 pounds from inital diagnose to after surgery... he's a little guy so trying to fatten him up with a bunch of healthy foods at the moment.

    Oct. 16th. (today) Call from Hospital setting up appointment Monday Oct 14 to meet with Onocological Dr. and to arrive early 1 hour for some tests.

    So that has been our whirlwind journey in the last 4 weeks.. I do have to say that they (Medical personal) have moved things along quite quickly.

    Have a nice weekend Adrian,
    Laurie
  • laurie83833
    laurie83833 Member Posts: 63
    Options
    AceSFO said:

    First Appointment
    Hi, Laurie,

    I'm so sorry to hear about your husband's diagnosis. My partner was Dx'd back in Oct of 2007, and I know what you're going through. His approach has been right from that start, that you can't change the diagnosis, but you can change the way you experience it.

    Our approach was to write up a list of questions first, which he would ask and I would take notes on the answers. We started a notebook for this and also collected business cards from the doctors and nurses who we would be involved with. You didn't give much detail about his particular situation, but maybe some general questions would be; what sort of treatment is typical - and what are the side effects - how is it administered? Are there any alternative treatments that would be worth looking into? How long will the treatment last? Will surgery be necessary? John recently had "cyber knife" treatments which are fairly new. Depending on Denny's cancer, you might ask if that is an option. It's painless and free from side effects.
    There's also a new method for administering chemo that was recently approved by the FDA and should be available soon, if not already. I posted about it on the "Caregivers" forum about a month ago - it should be easy to find if you scroll through those postings - it doesn't get much activity unfortunately. Ask about that if it seems like that would be an option for him. Also ask about Dendritic cell immunotherapy. Another new form of treatment without side effects or pain.

    I guess that's a start. Good think you found this board! The people on here are warm and welcoming and they'll make you feel like part of the family right away. Also there's a useful glossary of cancer terms and abbreviations that someone posted on this forum. I'll see if I can find it and bump it to the top.

    I recently finished a great book about dealing with any serious illness as a couple. Written by a husband and wife team, it tells the story of how they took on his metastatic melanoma together. He was diagnosed with the metastatic melanoma with 2 brain tumors and lymph involvement. 10 years later he's doing great and writing about the experience. If you're interested, it's called The Power of Two by Gerri and Brian Monaghan. It's about $15 on Amazon. It also gives a really useful list of 50 tips for caregivers. I wish I had found it when we started our journey 2 years ago.

    Hope this helps, and good luck on Monday - we'll be thinking about you and hoping it goes well.

    Adrian

    Some good things to ask about. - sorry dub post -
    Ended up duping post don't know how to delete.. sorry.
  • Julie 44
    Julie 44 Member Posts: 476 Member
    Options
    jakesman said:

    Not sure about this, and
    Not sure about this, and maybe you guys can back me up, but everything I've read points to Stage I/II having excellent prognoses, am I right? If so, this cancer thing will be a thing of the past soon!

    Hello
    It is very important to keep ALL paper work together. I got a folder and kept EVERYTHING in it from Doctors papers to insurance to pamphlets etc...You never know what you will need to refer back to since this is soooo very new and shocking to you both.. This is normal to feel like a deer caught in headlights and to be very confused..Write down all questions in ONE notebook. I made it a cancer journal..Then when the doctor tells you about what stage it is and what treatments are available do yourselfs a BIG favor and get a second opinion. This will confirm that your doctor is one the right tract and also it will get rid of the what ifs.....It gave me a great peace of mind to know that it was confirmed by someone else...
    Good luck and know that we are all here for you both...Try to get your hubby to come aboard because it does help to talk to other people who have gone through it...Also it helps the caregiver better understand what we go through cause I won't lie it really really stinks....
    But remember it is all do able.....Take care and keep on posting....JULIE
  • laurie83833
    laurie83833 Member Posts: 63
    Options

    Hi Laurie,you can ask
    Hi Laurie,you can ask oncologist to make sure which stage Denny is really at and don't forget to ask a copy of the pathology report.

    If the adjuvant chemo is suggested,you can ask doctor:
    1,How will the chemo be given?
    2,What supportive medication do you recommend and how should I take them to treat any side effects?
    3,what symptoms would you be concerned about?which ones should result in a phone call or emergency room evaluation?
    4,what kind of follow up do I need after adjuvant chemo is over?

    Good luck to you with the oncologist visit.Take care.

    Path report already requested copies -
    Hi there:

    Good questions for us to ask.. boy we will have a list a mile long.. that should keep tho's Dr.s thinking should they think again if they we are not going to be prepared and have not been doing our homework.. :)

    About 4 days ago we signed a release to have all his medical reports, notes, labs test, surgical report, doc's, pathological reports for all copies to be send to us via mail. Exverything since the first day of his physical until now. They said will take about 10 days to receive.

    Thank you,
  • laurie83833
    laurie83833 Member Posts: 63
    Options

    Hi Laurie,you can ask
    Hi Laurie,you can ask oncologist to make sure which stage Denny is really at and don't forget to ask a copy of the pathology report.

    If the adjuvant chemo is suggested,you can ask doctor:
    1,How will the chemo be given?
    2,What supportive medication do you recommend and how should I take them to treat any side effects?
    3,what symptoms would you be concerned about?which ones should result in a phone call or emergency room evaluation?
    4,what kind of follow up do I need after adjuvant chemo is over?

    Good luck to you with the oncologist visit.Take care.

    I messed my posts up..
    Geesh I screwed up my posts some how.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    Options
    jakesman said:

    Not sure about this, and
    Not sure about this, and maybe you guys can back me up, but everything I've read points to Stage I/II having excellent prognoses, am I right? If so, this cancer thing will be a thing of the past soon!

    No Node involvement I think is the key to containment...
    The nodes make it possible for it to invade the lymphatic system making it possible to be carried to other organs. Him having no node involvement gives him a great prognosis in my opinion for going 5 years without re occurence, and that is what we all shoot for... Its actually the same as mine but I still elected to have the post op chemo (Folfox) to be absolutely sure that I had done everything in my power to live to be 125 years old. It sounds as if he has already made it over the major hurdles like diagnosis,surgery etc so the adjuvent chemo should be the end other than checkups for 5 years following.....

    BTW, I think the CAT scans show larger masses and the PET scan is a nuclear scan in which if im not mistaken lights up anything larger than a centimeter.....REMEMBER !!! The PET scan has also lite up many of our scar tissue so be aware that what you might see light up could very well be scar tissue rather than cancer cells...Jusr food for thought... The Folfox (probable adjuvant chemo regimen he will be on)is a butt kicker but nothing we can't get you through. Stick with us, we're good at what we do..LOL.......Holler anytime, we're always home, Clift
  • laurie83833
    laurie83833 Member Posts: 63
    Options

    Hi Laurie,you can ask
    Hi Laurie,you can ask oncologist to make sure which stage Denny is really at and don't forget to ask a copy of the pathology report.

    If the adjuvant chemo is suggested,you can ask doctor:
    1,How will the chemo be given?
    2,What supportive medication do you recommend and how should I take them to treat any side effects?
    3,what symptoms would you be concerned about?which ones should result in a phone call or emergency room evaluation?
    4,what kind of follow up do I need after adjuvant chemo is over?

    Good luck to you with the oncologist visit.Take care.

    Im rambing.. on..
    Yes Thank you!

    I have been reading alot of your posts and I really admire each and everyone of you. This board has helped me (and in turn around Denny) as I can be more positive for him which in return makes him more positive and relaxed.

    I hope you enjoy his music.. he is gifted in music and can play anything that is put infront on him, Piano (I always say he's got Bethovans spirit in him) since neither of us listen to that type of music but it just flows from his heart down his fingers and into the keys like it is nothing and sounds so beautiful (it even shocks him at times he says). Plays, Bass guitar, guitar, keyboards, congos, bongos, fiddle, banjo, composes his own music and does not know how to read a note. I guess he's kind of a celebrity in our town (which even made it harder once we let the news out about his diagnosis - the phone was ringing off the hook) it was nice to have everyone care but it was so exhausting for me (the both of us) to explain over and over each step 5- 10 times each and every day.. I just started writing (Updates) in one email and sending to all I could think about and ask that they pass it along.

    Gosh it feels so good just to talk.. vent.. thanks for listening.. I don't mean to ramble.
  • AceSFO
    AceSFO Member Posts: 229
    Options
    Julie 44 said:

    Hello
    It is very important to keep ALL paper work together. I got a folder and kept EVERYTHING in it from Doctors papers to insurance to pamphlets etc...You never know what you will need to refer back to since this is soooo very new and shocking to you both.. This is normal to feel like a deer caught in headlights and to be very confused..Write down all questions in ONE notebook. I made it a cancer journal..Then when the doctor tells you about what stage it is and what treatments are available do yourselfs a BIG favor and get a second opinion. This will confirm that your doctor is one the right tract and also it will get rid of the what ifs.....It gave me a great peace of mind to know that it was confirmed by someone else...
    Good luck and know that we are all here for you both...Try to get your hubby to come aboard because it does help to talk to other people who have gone through it...Also it helps the caregiver better understand what we go through cause I won't lie it really really stinks....
    But remember it is all do able.....Take care and keep on posting....JULIE

    It all sounds very familiar
    Hi, Laurie,

    What great news that they caught it so early! That's Great!

    It sounds a lot like John's situation (he's on here too as johnsfo btw), only his was stage 3 when they found it two years ago. He had about 12" of descending colon resected and as soon as was possible after the surgery started on a 6-month regimen of chemo. Xeloda and Oxalyplatin. He tolerated the Xeloda very well but the Oxy was another story. Terrible neuropathy and at first they were giving it as an infusion which started to "burn" his veins. He got a port inserted in his chest and that made a huge difference. I'm not saying this to scare you, but just to let you know it's possible. They didn't really tell us about all the side effects. They also didn't tell us the neuropathy would continue to get worse after stopping chemo. It took a long time for it to wear off, but eventually it did.

    I have no idea what chemo they'll give him, but for what it's worth, John also got a lot of nausea with the chemo. No vomiting, just nausea. My sister was pregnant at the time and sent us some little candies called "Preggie Pop Drops" designed for morning sickness. They worked great and he could keep some in his pocket for when he needed them. The other thing that worked really well for nausea isn't exactly legal, but killed the nausea instantly. Don't know how you feel about that, but it works. Also, about the Preggie Pop Drops, sugar is known to feed cancer and a lot of people try to avoid it. Just thought I'd put that out there. John puts sugar in the "quality of life" category and won't do without it.

    Check out the book if you can find it - It's really worthwhile I think. If for no other reason than the list of tips. Also it's funny. You wouldn't think a book about Melanoma and brain tumors would be funny, but parts of it really are.

    Anyway - go celebrate this weekend and do something fun.
    Here's wishing you both strength and tenacity!
  • jakesman
    jakesman Member Posts: 33
    Options
    Buzzard said:

    No Node involvement I think is the key to containment...
    The nodes make it possible for it to invade the lymphatic system making it possible to be carried to other organs. Him having no node involvement gives him a great prognosis in my opinion for going 5 years without re occurence, and that is what we all shoot for... Its actually the same as mine but I still elected to have the post op chemo (Folfox) to be absolutely sure that I had done everything in my power to live to be 125 years old. It sounds as if he has already made it over the major hurdles like diagnosis,surgery etc so the adjuvent chemo should be the end other than checkups for 5 years following.....

    BTW, I think the CAT scans show larger masses and the PET scan is a nuclear scan in which if im not mistaken lights up anything larger than a centimeter.....REMEMBER !!! The PET scan has also lite up many of our scar tissue so be aware that what you might see light up could very well be scar tissue rather than cancer cells...Jusr food for thought... The Folfox (probable adjuvant chemo regimen he will be on)is a butt kicker but nothing we can't get you through. Stick with us, we're good at what we do..LOL.......Holler anytime, we're always home, Clift

    That's what I thought... in
    That's what I thought... in that case, you (thread starter) have no reason to worry! Everything's gonna be alright! Yay :)
  • Shayenne
    Shayenne Member Posts: 2,342
    Options
    jakesman said:

    That's what I thought... in
    That's what I thought... in that case, you (thread starter) have no reason to worry! Everything's gonna be alright! Yay :)

    You Know....
    I have never had a PET scan before, and I been on treatments since Feb, but do get regular CT scans, are these PET scans needed? I wonder why I was never ordered to have one.

    Hugsss!
    ~Donna