New - Stage 2 N0M0 - diagnosed March 10, 2010

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Comments

  • lizdeli
    lizdeli Member Posts: 569 Member
    #22
    z said:

    Chris
    Hi Chris,

    I couldn't wait to get started either. I had my mom come over my 1st day of chemo. I was just so scared to have the chemo. The 1st time I cried after my dx was the day I asked my mom to come over on my 1st day of chem., I guess the reality finally hit me, that I had cancer. After the 1st day I adjusted rather quickly, and tolerated the chemo very well. I only took the nausea meds twice. I ate a lot of soup, which was soothing and tasteful. I also drank a lot of water.

    You mentioned the trial had cisplatin, I haven't heard of the other Cetuximab. Another anal cancer survivor has been treated with the cisplatin and 5FU, she had lymph node involement also. I had the myto and 5FU as you will be having. My onc said he prefers the myto, due to less incidence of colostomys and therefore meaning less recurrance. Although the cisplatin has proven to work also, I beleive theres only about a 4% difference in the stats for recurrance using the cisplatin instead of the myto.

    It sounds like you have lots of support and drs you like. I think the scariest part is not knowing how it will feel, but after you realize that the chemo is tolerable, you'll be fine. I know when I went to get hooked up for chemo, there were as young as 18 year old patients, and as old as 80 years olds, and I knew if they can do this so can I. I wish you well, and keep us posted. Lori

    Cisplatin
    Hi Chris,
    I am the person who had Cisplatin vs. Mitomicyn (never could spell that). I did not get anythig called Cetuximab though. Of course I had the radiation as well. I had a lymph node light up in the pelvic area as well, it was about 6mm in size. My tumor was 2 cm in size. I finished treatment in Sept 2009 and my first follow up in Dec 2009 came back good with no signs of cancer. NED as well call it (No Evidence of Disease). I don't think Cisplatin is hte trial, but the Cetuximab must be part of it. I had very little side affects from the Cisplatin, fortunately. The treatment in general is not easy, radiation can be tough as you get closer to the finish line for treatment. But you will get through it and there will be lots of people here to help you.

    Wishing you well and a speedy and successful 6 or 7 weeks of treatment.
    Liz
  • Chris3
    Chris3 Member Posts: 58
    #23
    lizdeli said:

    Cisplatin
    Hi Chris,
    I am the person who had Cisplatin vs. Mitomicyn (never could spell that). I did not get anythig called Cetuximab though. Of course I had the radiation as well. I had a lymph node light up in the pelvic area as well, it was about 6mm in size. My tumor was 2 cm in size. I finished treatment in Sept 2009 and my first follow up in Dec 2009 came back good with no signs of cancer. NED as well call it (No Evidence of Disease). I don't think Cisplatin is hte trial, but the Cetuximab must be part of it. I had very little side affects from the Cisplatin, fortunately. The treatment in general is not easy, radiation can be tough as you get closer to the finish line for treatment. But you will get through it and there will be lots of people here to help you.

    Wishing you well and a speedy and successful 6 or 7 weeks of treatment.
    Liz

    Cisplatin vs Mitomycin
    Hi Liz,

    I'm glad the Cisplatin protocol worked well for you. I just didn't feel comfortable with the change. I had read the same studies that Lori mentioned in her post. My Med Onc said there was a newer study that showed Cisplatin comparable to Mitomycin but he never showed me the info. The Cetuximab (aka Erbitux) is supposed to starve the cancer cells of their blood supply. It has been used successfully with squamous cell cancers of the head and neck, so the theory is that it may be effective on the squamous cell anal cancers. And while the Cisplatin was on Wk 1 & 5, the Cetuximab would need to be administered weekly on Days 1, 8 , 15, 22, 29, 36, 43 & 50. I just wasn't onboard with waiting an extra week, so I just decided to stick with 5FU/Mitomycin.

    I like the tip about the Jello - I will definitely make sure I have some handy in the fridge. It does sound like it would be something the would be very soothing to the stomach.

    Thanks again to all.

    Chris
  • pjjenkins
    pjjenkins Member Posts: 173
    #24
    mp327 said:

    Wishing you the best!
    Hi Chris--

    I know how you feel about just wanting things to get underway. I couldn't wait to get started with chemo/rad--I figured the quicker it starts, the sooner it ends! I'm glad you feel comfortable with your doctors, as I think that is very important. Sorry to hear about the lymph node lighting up on your scan, but it will get zapped and no longer be a concern! I know you are very anxious and don't quite know what to expect on day 1, but it should go well for you. I had no problems my first day and felt fine, just a little tired that evening. I did have issues with morning nausea, so I always made sure I had a big bowl of jello in the frig waiting for me every morning. I would eat some of that upon waking up to get something on my stomach and that helped a lot. As soon as my stomach settled, then I could eat breakfast. Plus the jello is just another way of getting more fluids, which you want to make sure to get plenty of! Please let us know how it goes and remember we are here to help you get through this!

    First Day
    Hi, Chris,

    I hope your first day has gone smoothly. Please tuck your fanny pack (you have one I assume) in well tonight though I have not seen that any of us had any significant problems with them... they can be just plain annoying.

    The jello idea I really like! I had some nausea but not until late in the week and that first week was not bad - the meds work! I did work at the beginning of my treatment and only stopped because my family insisted that get the rest they think I needed and I didn't resist their loving care and kindness- indeed feel sure it was part of why I got through it all as well as I did.

    May your treatment go well and your results be like most of ours!

    Keep us posted,

    Priscilla
  • Chris3
    Chris3 Member Posts: 58
    #25
    First Day of chemoradiation went great
    Hi All,

    Yesterday's inaugural chemo and radiation treatments went great. No adverse reaction to either of the treatments. (They said I may crash a little bit on Day 2 - on Day 1 I received some steroids which probably gave me a little energy boost.)

    The worst part of the day was when my cousin and I went to a nearby restaurant for a light dinner. The restaurant is also a local brew pub. It about killed me to sit in that place without ordering a beer!!!


    Take care.

    Chris
  • mp327
    mp327 Member Posts: 4,440 Member
    #26
    Chris3 said:

    First Day of chemoradiation went great
    Hi All,

    Yesterday's inaugural chemo and radiation treatments went great. No adverse reaction to either of the treatments. (They said I may crash a little bit on Day 2 - on Day 1 I received some steroids which probably gave me a little energy boost.)

    The worst part of the day was when my cousin and I went to a nearby restaurant for a light dinner. The restaurant is also a local brew pub. It about killed me to sit in that place without ordering a beer!!!


    Take care.

    Chris

    Day one done!
    Hi Chris--

    I'm so glad that your first day went well with no problems. Gradually, you may begin to feel fatigue coming on, so get plenty of rest and drink PLENTY of fluids! I would also recommend beginning to gargle with water and salt or baking soda to prevent mouth sores. I wish you continued good days!
  • z
    z Member Posts: 1,414 Member
    #27
    mp327 said:

    Day one done!
    Hi Chris--

    I'm so glad that your first day went well with no problems. Gradually, you may begin to feel fatigue coming on, so get plenty of rest and drink PLENTY of fluids! I would also recommend beginning to gargle with water and salt or baking soda to prevent mouth sores. I wish you continued good days!

    Day one
    Hi Chris,

    I'm happy your 1st day went smoothly. Now the cancer is getting its due medicine and it will be gone soon. I know my 1st chemo day, we ordered a pizza and my mom and friend and her baby came over. I asked my friend to bring the baby, because the baby made me feel happy. I know that by about the 3rd or 4th day I started to get tired, with the combined effect of both the chemo and rads fighting the cancer. I was fortunate that I was able to take off work for 2 months. I know I was always tired before my dx. After treatment was completed and all the chemo/rads out of my system I started to feel better than I have in years. I wish you well. Lori
  • z
    z Member Posts: 1,414 Member
    #28
    mp327 said:

    Day one done!
    Hi Chris--

    I'm so glad that your first day went well with no problems. Gradually, you may begin to feel fatigue coming on, so get plenty of rest and drink PLENTY of fluids! I would also recommend beginning to gargle with water and salt or baking soda to prevent mouth sores. I wish you continued good days!

    Day one
    Hi Chris,

    I'm happy your 1st day went smoothly. Now the cancer is getting its due medicine and it will be gone soon. I know my 1st chemo day, we ordered a pizza and my mom and friend and her baby came over. I asked my friend to bring the baby, because the baby made me feel happy. I know that by about the 3rd or 4th day I started to get tired, with the combined effect of both the chemo and rads fighting the cancer. I was fortunate that I was able to take off work for 2 months. I know I was always tired before my dx. After treatment was completed and all the chemo/rads out of my system I started to feel better than I have in years. I wish you well. Lori
  • winnipeg
    winnipeg Member Posts: 23
    #29
    Chris3 said:

    First Day of chemoradiation went great
    Hi All,

    Yesterday's inaugural chemo and radiation treatments went great. No adverse reaction to either of the treatments. (They said I may crash a little bit on Day 2 - on Day 1 I received some steroids which probably gave me a little energy boost.)

    The worst part of the day was when my cousin and I went to a nearby restaurant for a light dinner. The restaurant is also a local brew pub. It about killed me to sit in that place without ordering a beer!!!


    Take care.

    Chris

    Chris if there is any
    Chris if there is any difficulty with your case, you can tell your doctors that I am 2.5 years out from a diagnosis of Stage 4, liver mets, no nodes, and was got into this condition with chemo: Carboplatin, Taxol, and Xeloda (oral 5-FU). My full remission, due to lingering disease near my anus, was reached a year ago. My liver's been clean since 6/2008. This was proven with a 4-hour laparotomy on 3/13/2009, which is an open liver surgery, during which cancer was assiduously sought but not found.

    Winnie

    Onc: Dr. William Stanton III, San Diego, CA area code (619).
  • sissy310
    sissy310 Member Posts: 300
    #30
    winnipeg said:

    Chris if there is any
    Chris if there is any difficulty with your case, you can tell your doctors that I am 2.5 years out from a diagnosis of Stage 4, liver mets, no nodes, and was got into this condition with chemo: Carboplatin, Taxol, and Xeloda (oral 5-FU). My full remission, due to lingering disease near my anus, was reached a year ago. My liver's been clean since 6/2008. This was proven with a 4-hour laparotomy on 3/13/2009, which is an open liver surgery, during which cancer was assiduously sought but not found.

    Winnie

    Onc: Dr. William Stanton III, San Diego, CA area code (619).

    a newbee
    Last Friday I had some hemmoroids removed due to bleeding and pain. Unfortunately the surgeon found a tumor and removed 'most' of that. Had it biopsied and it turned out to be a squamous cell tumor. I do not know what stage, what size, where it was located or anything yet. Had a colonoscopy in 07 and that was clean except for one polyp so this started occurring from that point until now - only do not know when. Started having hemmoroid issues in May of last year around the time of my son's wedding - off and on, bleeding etc. Did not get worse until the last few months. I have appts in the next couple weeks with more specialized color-rectal surgeons (one from the Univ of Minnesota) so I started to investigate and research everything I could about anal cancer and found this site. What a blessing it is. I wish it did not exist however because I realize all of you are going through your own trials but it is a blessing to be able to hear what everyone else has and is going through, what to expect, what to look out for, what to ask and simply for the camaraderie and support that resonates through these posts. I'm right now just scared...not sure what to expect, fearing that it has spread. I suppose I have to wait until I see the surgeon next week as a follow up and then meet with two other 'more experienced' surgeons with this type of cancer. The reason I'm meeting two is my regular MD wanted me to have a choice as to who I'd feel more comfortable with...for me I just want to get going and kick it's butt. I'm 62 btw and never had HPV. Okay, that is about all I have to say right now. I am writing down a lot of information from this site from all of you to take with me to these meetings and will continue to come on here and read as well as research some more. My heart and prayers are with you all.
  • sissy310
    sissy310 Member Posts: 300
    #31
    z said:

    Chris
    Chris,

    I thought it was a hemroid, so I saw my gyno, who reffered me to a gastro who said it could be a hemroid, who reffered my to a general surgeon who said that is not a hemroid, where I had a colonoscopy and biopsy to dx my cancer. I was then reffered to a onc, who wanted to treat me with the standard nigro treatment.

    At that time I wanted a 2nd opionion and went to a very well respected colo-rectal surgeon. After the colo-rectal surgeon examined me and we discussed my treatment plan, in which, he totally agreed with, I started the standard treatment. I have only had biopsys. Now if my surgeon had wanted to remove the cancer, I would have done that, but also would have followed up with the standard chemo/radiation to remove any cancer cells that were still present in my body.

    Lori

    Musical Chairs
    Z and Chris - I found it interesting to see that you were moved around a bit before they found something. I did go to my MD first and he gave me suppositories and such for hemorrhoids and even felt around and said there was one big one, the colo-rectal surgeon also did investigate and said yup, hemorrhoids and scheduled the surgery. I went back at one point to my regular MD thinking I might have had a prolapse because I had one in 2002 and it felt the same but he said no (even did a pelvic). Through all this neither one saw the tumor until I had the surgery and they went in. That does not give me much confidence and from what I am reading with your posts here being an educated patient who is armed with information and asks questions is the best way to go. My brother (who is in remission right now with myeloma) told me to request a PET scan to be sure it did not spread. Do you think I should do this? Marilyne (aka Sissy)
  • z
    z Member Posts: 1,414 Member
    #32
    sissy310 said:

    a newbee
    Last Friday I had some hemmoroids removed due to bleeding and pain. Unfortunately the surgeon found a tumor and removed 'most' of that. Had it biopsied and it turned out to be a squamous cell tumor. I do not know what stage, what size, where it was located or anything yet. Had a colonoscopy in 07 and that was clean except for one polyp so this started occurring from that point until now - only do not know when. Started having hemmoroid issues in May of last year around the time of my son's wedding - off and on, bleeding etc. Did not get worse until the last few months. I have appts in the next couple weeks with more specialized color-rectal surgeons (one from the Univ of Minnesota) so I started to investigate and research everything I could about anal cancer and found this site. What a blessing it is. I wish it did not exist however because I realize all of you are going through your own trials but it is a blessing to be able to hear what everyone else has and is going through, what to expect, what to look out for, what to ask and simply for the camaraderie and support that resonates through these posts. I'm right now just scared...not sure what to expect, fearing that it has spread. I suppose I have to wait until I see the surgeon next week as a follow up and then meet with two other 'more experienced' surgeons with this type of cancer. The reason I'm meeting two is my regular MD wanted me to have a choice as to who I'd feel more comfortable with...for me I just want to get going and kick it's butt. I'm 62 btw and never had HPV. Okay, that is about all I have to say right now. I am writing down a lot of information from this site from all of you to take with me to these meetings and will continue to come on here and read as well as research some more. My heart and prayers are with you all.

    Sissy
    Hi Sissy,

    Sorry you had to find this site. Welcome. Its great that the surgeon was able to remove most of the tumor. I completed tx on 6-30-09, and so far theres NED (no evidence of decease). I was dx Anal verge cancer stage II NOMO. I went throught the standard nigro tx. Dr. Nigro found this tx years ago, and it is considered the standard tx for anal cancer. Remember anal cancer can be cured. That was the 1st thing my general surgeon told me after telling me this looks like squamous cell carcinoma. It sounds like you have good drs on your side and they will tell you what to do next. Another site with great information about anal cancer, and anal cancer survivors is the rare cancer alliance web site. If you google it, you will find it and have to register, and it will take up to 48 hours to get a log in. Keep us posted. I wish you well. Lori
  • sissy310
    sissy310 Member Posts: 300
    #33
    z said:

    Sissy
    Hi Sissy,

    Sorry you had to find this site. Welcome. Its great that the surgeon was able to remove most of the tumor. I completed tx on 6-30-09, and so far theres NED (no evidence of decease). I was dx Anal verge cancer stage II NOMO. I went throught the standard nigro tx. Dr. Nigro found this tx years ago, and it is considered the standard tx for anal cancer. Remember anal cancer can be cured. That was the 1st thing my general surgeon told me after telling me this looks like squamous cell carcinoma. It sounds like you have good drs on your side and they will tell you what to do next. Another site with great information about anal cancer, and anal cancer survivors is the rare cancer alliance web site. If you google it, you will find it and have to register, and it will take up to 48 hours to get a log in. Keep us posted. I wish you well. Lori

    Lori
    Thanks Lori for your information and support. I truly am sorry we all have to be in this site but am thankful that we share some common bond to support one another through all this. When I started to research all this after finding out yesterday morning it was squamous cell, the information out there can really freak you out if you do not know where to read or go. Finding this and reading what others went through has helped markedly. Did read about Dr. Nigro. Dx I am assuming means diagnosis? Tx? What does that mean? Treatment? I will learn as much as I can and be as supportive to everyone in here as well. Right now I am waiting to hear what the numbers are so I have some baseline to work with. I will go in and register on the site you suggested as well. I'm one of these who believes you can't learn enough about anything (much to the dismay of my regular MD). Thanks for responding. I'm still learning how to maneuver in this site. Be well, Marilyne
  • pjjenkins
    pjjenkins Member Posts: 173
    #34
    sissy310 said:

    a newbee
    Last Friday I had some hemmoroids removed due to bleeding and pain. Unfortunately the surgeon found a tumor and removed 'most' of that. Had it biopsied and it turned out to be a squamous cell tumor. I do not know what stage, what size, where it was located or anything yet. Had a colonoscopy in 07 and that was clean except for one polyp so this started occurring from that point until now - only do not know when. Started having hemmoroid issues in May of last year around the time of my son's wedding - off and on, bleeding etc. Did not get worse until the last few months. I have appts in the next couple weeks with more specialized color-rectal surgeons (one from the Univ of Minnesota) so I started to investigate and research everything I could about anal cancer and found this site. What a blessing it is. I wish it did not exist however because I realize all of you are going through your own trials but it is a blessing to be able to hear what everyone else has and is going through, what to expect, what to look out for, what to ask and simply for the camaraderie and support that resonates through these posts. I'm right now just scared...not sure what to expect, fearing that it has spread. I suppose I have to wait until I see the surgeon next week as a follow up and then meet with two other 'more experienced' surgeons with this type of cancer. The reason I'm meeting two is my regular MD wanted me to have a choice as to who I'd feel more comfortable with...for me I just want to get going and kick it's butt. I'm 62 btw and never had HPV. Okay, that is about all I have to say right now. I am writing down a lot of information from this site from all of you to take with me to these meetings and will continue to come on here and read as well as research some more. My heart and prayers are with you all.

    newbee
    Hi, Sissy,
    Sorry that you got our diagnosis...dx... but the thing to keep in mind now is that a large majority of us beat this thing.

    I remember those first few days... a numbness and bit of denial right along with the internet searching for information. Lots of quick learning and scariness. I started my venture at age 64 and just had my followup for second year past treatment ...tx... and have NED (No Evidence of Disease).

    You sound like you have one of the best traits with this disease- willingness to learn and readiness to be a partner with your doctors. Always ask questions! Advocate for yourself!

    Last statistic I heard is that fewer than 5000 people get this each year so it is rare. This site is a treasure trove of info and I always thank Joanne who started it a half year ago.

    You mention surgeons. I think a good gastroenterologist and medical oncologist are your likely next referrals. Since you had surgery, I don't know if radiation is in your future. Most of us had radiation and chemo. Few of us have had surgery - at least on this Board.

    Whether one works through tx or not depends on a number of variables. I stopped working about two weeks into treatment but did a few outside things anyway (I was running for office and attended training sessions for that). But mostly I had treatments in the morning, breakfast afterwards with my mate, slept til soup for lunch and then movies etc for the rest of the day. My husband was working from home and had few assignments during that time so he made me watch lots of interesting stuff with him. My daughter became our chief cook and bottle washer (her church friends prepared and froze 30 meals!!) and lots of church friends cooked many meals. I was blessed. Most folks here didn't have all these supports.

    Come back often and ask quesstions here, too.

    Best of Luck-
    Priscilla
  • pjjenkins
    pjjenkins Member Posts: 173
    #35
    sissy310 said:

    a newbee
    Last Friday I had some hemmoroids removed due to bleeding and pain. Unfortunately the surgeon found a tumor and removed 'most' of that. Had it biopsied and it turned out to be a squamous cell tumor. I do not know what stage, what size, where it was located or anything yet. Had a colonoscopy in 07 and that was clean except for one polyp so this started occurring from that point until now - only do not know when. Started having hemmoroid issues in May of last year around the time of my son's wedding - off and on, bleeding etc. Did not get worse until the last few months. I have appts in the next couple weeks with more specialized color-rectal surgeons (one from the Univ of Minnesota) so I started to investigate and research everything I could about anal cancer and found this site. What a blessing it is. I wish it did not exist however because I realize all of you are going through your own trials but it is a blessing to be able to hear what everyone else has and is going through, what to expect, what to look out for, what to ask and simply for the camaraderie and support that resonates through these posts. I'm right now just scared...not sure what to expect, fearing that it has spread. I suppose I have to wait until I see the surgeon next week as a follow up and then meet with two other 'more experienced' surgeons with this type of cancer. The reason I'm meeting two is my regular MD wanted me to have a choice as to who I'd feel more comfortable with...for me I just want to get going and kick it's butt. I'm 62 btw and never had HPV. Okay, that is about all I have to say right now. I am writing down a lot of information from this site from all of you to take with me to these meetings and will continue to come on here and read as well as research some more. My heart and prayers are with you all.

    PS Yes, get a PET scan
    Somewhere here on the board there is a reference to a study showing that PET scans have an edge over CAT on observing any metastasis. I will see if I can rustle it up this weekend or maybe someone else remembers where it is cited.
    Priscilla
  • mp327
    mp327 Member Posts: 4,440 Member
    #36
    sissy310 said:

    Musical Chairs
    Z and Chris - I found it interesting to see that you were moved around a bit before they found something. I did go to my MD first and he gave me suppositories and such for hemorrhoids and even felt around and said there was one big one, the colo-rectal surgeon also did investigate and said yup, hemorrhoids and scheduled the surgery. I went back at one point to my regular MD thinking I might have had a prolapse because I had one in 2002 and it felt the same but he said no (even did a pelvic). Through all this neither one saw the tumor until I had the surgery and they went in. That does not give me much confidence and from what I am reading with your posts here being an educated patient who is armed with information and asks questions is the best way to go. My brother (who is in remission right now with myeloma) told me to request a PET scan to be sure it did not spread. Do you think I should do this? Marilyne (aka Sissy)

    Hi Sissy
    I would think your doc would have to order a PET scan for you to stage your cancer. Before doing any treatment, they need to know what they are dealing with, such as lymph node involvement or spread to any other organs.
  • sissy310
    sissy310 Member Posts: 300
    #37
    pjjenkins said:

    newbee
    Hi, Sissy,
    Sorry that you got our diagnosis...dx... but the thing to keep in mind now is that a large majority of us beat this thing.

    I remember those first few days... a numbness and bit of denial right along with the internet searching for information. Lots of quick learning and scariness. I started my venture at age 64 and just had my followup for second year past treatment ...tx... and have NED (No Evidence of Disease).

    You sound like you have one of the best traits with this disease- willingness to learn and readiness to be a partner with your doctors. Always ask questions! Advocate for yourself!

    Last statistic I heard is that fewer than 5000 people get this each year so it is rare. This site is a treasure trove of info and I always thank Joanne who started it a half year ago.

    You mention surgeons. I think a good gastroenterologist and medical oncologist are your likely next referrals. Since you had surgery, I don't know if radiation is in your future. Most of us had radiation and chemo. Few of us have had surgery - at least on this Board.

    Whether one works through tx or not depends on a number of variables. I stopped working about two weeks into treatment but did a few outside things anyway (I was running for office and attended training sessions for that). But mostly I had treatments in the morning, breakfast afterwards with my mate, slept til soup for lunch and then movies etc for the rest of the day. My husband was working from home and had few assignments during that time so he made me watch lots of interesting stuff with him. My daughter became our chief cook and bottle washer (her church friends prepared and froze 30 meals!!) and lots of church friends cooked many meals. I was blessed. Most folks here didn't have all these supports.

    Come back often and ask quesstions here, too.

    Best of Luck-
    Priscilla

    To Precilla
    Thank you for your upbeat comments, advice and for putting a little lift in my heart. Right now I just feel like I do not KNOW enough. I'm one who needs information, more information and then some. When I had my hysterectomy in 1995 (prolapse,no cancer) I read so much and learned so much I was sure I could perform the surgery on myself. :-) But this is different and from reading everyone's posts, it is a 'fight' so to speak that includes everyone: self, doctors, family, friends...and I'm beginning to understand now that this type of venue where more support and friendship is gleaned and grown is also important, not just for me but for all of us. I'm not a taker, I'm a giver so it was hard for me to come into this site because I knew in seeking the information I would have to open myself up and actually say out loud what was going on. I still have not told many of my friends here in this state but told my two best friends in another state I originally lived. I want to wait to hear what the depth of this is as I still do not know much. It is all so new. I believe the surgeon got 95% of it and mentioned I had to have the rest burned out. My brother (who suffers from myeloma) also suggested a PET scan which I will bring up when I ask the surgeon what course of action he plans on taking. My two greatest fears right now is that it spread, was very large and that it went to other parts of my body. I think if I can alleviate at least the latter one I can relax somewhat. I am happy to hear that you are two years NED...I'm starting to love those letters...Thanks again. I will continually look in here to see if I can be of help to others as well once I learn what all this entails. Thank you. Be well. Marilyne

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