Here's another newbie

sarea
sarea Member Posts: 9
in Anal Cancer #1
Hi everyone.

I have anal cancer (feel like I'm in front of a group of an AA meeting! :-)

I'm T2 N0 M0; I've had all my tests done and start chemo and radiation this coming Monday.

I've been reading this wonderful forum to find out as much as I can before something comes up and I'm unprepared.

I'm so glad I was given this link, you will help me so much, actually you already have.

I have two questions if someone could share their thoughts with me?

The first is I hear a lot about getting a chemo oncologist and radiology oncologist that are specialists with our rare cancer.
When going through my tests and talking to the two oncologists I felt very strongly that they knew what they were doing and I was in good hands. I have read here, though, that you should only get the ones that are the specialists in this. Does everyone here seek out the specialists? I don't know if I would be able to do that, being somewhat limited in insurance, money, etc. Have some of you just used the regular ones at regular hospitals and come out ok? I'm getting kind of worried now.

The second question is has anyone gone through anal cancer treatment with extra calcium in their blood? I am currently being tested for primary hyperparathyroidism, and I'm concerned that if I have it, how will it affect my chemo? This condition is also very rare, so dealing with both at the same time is getting really confusing.

Thank God I was shown this forum and thank you for taking time to read my post. Sarea
«1

Comments

  • Lorikat
    Lorikat Member Posts: 681 Member
    #2
    Hi Sarea..
    I have the same
    Hi Sarea..
    I have the same diagnosis with same staging. I would, if at all possible, suggest that you at least get an opinion from the specialists. Or, at the least have your doctors talk to them? I was blessed to be able to go to MDAnderson for dx and tx. But can understand if yo can't. I don't know where ou live but believe MDA can help you find financing and housing.

    That said I am. 14 months in remission and doing well. Will be happy to help if I can..... Everyone has sure helped me. Still do!! Lorie
  • pializ
    pializ Member Posts: 508 Member
    #3
    Sarea
    I am sorry that like all of us you had the need to find this site. I am sorry I can't answer your questions. However, I am so glad I have found this site as people here are very very helpful, and lets face it, we all need a bit of help when this happens to us. I am due to start treatment on 18th. I have been diagnosed with Anal cancer with lymph node in mesorectum and pelvic area.
  • geneviasue
    geneviasue Member Posts: 89
    #4
    Hello Sarea
    You have found a wonderful site filled with caring people. I'm sorry you face this cancer. I'm T2 no mo too and 5 days post treatment so know this treatment is doable. Rough at times but the majority is ok..at less for me and most I've read about. Stay positive and allow Gods grace to surround you during this time.
    Questions: I didn't seek specialist but after meeting with my oncologist I felt he was well informed about anal cancer and is a part of a reputable hospital. I know there is a standard protocol for AC so if they meet that standard with your treatment then I think that's a positive thing. On your other condition, I have no idea.
    God bless and know you can ask anything here.
    Gigi from TN
  • mxperry220
    mxperry220 Member Posts: 496 Member
    #5
    Both my radiation and chemo oncologists were not anal cancer specialists. They had ability to consult with other doctors if the need arose. I am 3 years 11 post post treatment. I was treated in 12/2008-01/2009.
    Mike
  • sarea
    sarea Member Posts: 9
    #6
    mxperry220 said:

    Both my radiation and chemo oncologists were not anal cancer specialists. They had ability to consult with other doctors if the need arose. I am 3 years 11 post post treatment. I was treated in 12/2008-01/2009.
    Mike

    Wonderful!
    Thanks everyone, I'm gonna spend today and tomorrow sitting on my butt until I'm sick of it, gives me the perfect excuse, snicker!

    I'm glad not all went to the experienced ocologists with this, I needed some assurance. From what I can tell they are following protocol to a "T" so I will trust my instincts and your thoughts on this.

    I'm makeing sure all the "ists" know everything that is going on, but it's starting to get confusing, so I will see if I can have copies sent to those involved.

    The calcium has me kinda worried, but I will keep looking. Also, I've told both oncs what is going on with that, and they didn't seem worried at all. I'll try to find out Monday for sure they don't have a problem with it.

    Thanks for the answers. Sorry, I'll hafta stick around now. :-)
  • AZANNIE
    AZANNIE Member Posts: 445 Member
    #7
    Sarea
    Welcome and sorry you have to be here, too. And yes, there's a wealth of information here.
    I was stage 2 and had a regular chemo oncologist and radiation oncologist. One of the hospital nurses had high praise for the chemo oncologist. I'm 18 months post treatment and doing fine. Tests have been clear.
    Best wishes to you as you begin your journey.

    Ann
  • LaCh
    LaCh Member Posts: 557
    #8
    AZANNIE said:

    Sarea
    Welcome and sorry you have to be here, too. And yes, there's a wealth of information here.
    I was stage 2 and had a regular chemo oncologist and radiation oncologist. One of the hospital nurses had high praise for the chemo oncologist. I'm 18 months post treatment and doing fine. Tests have been clear.
    Best wishes to you as you begin your journey.

    Ann

    hyperparathyroidism
    I'm about to start chemo and radiation for a stage I or II anal tumor. In 2006 I was (finally) diagnosed with hyperparathyriodism. I'd had slightly elevated levels of blood calcium for many years that no one had diagnosed properly (which is no surprise to me, as someone with a pretty low opinion of western medicine and its practitiners). In any case, in relation to your question, I had surgery to remove a parathyroid tumor in 2006 (You probably already know that there are 4 parathyroid glands and that identifying the one with the tumor is of critical importance when removing it). The surgery was a day proceedure, it was done in a hospital under a local nerve block and light sedation, recovery was very easy and without event and best of all, as soon as the tumor was removed, the blood calcium levels dropped to normal. As a matter of fact, they kept me lying on the operating table in the OR while they ran the gland down to pathology to make sure that they;d removed the right one (their normal protocol). I'm very reluctant to give advice of any kind, not only here but in general, but maybe you might want to at least have a consult with an endocrinologist before you start Tx for the anal cancer, to see if excising the parathyroid tumor is a viable possibility before starting treatment for the anal cancer. For me, at least, the surgery was quick, easy, uncomplicated and had little or no effect on daily living and once the thing is gone, you don't have to think about it any more. It's just a thought.
  • mp327
    mp327 Member Posts: 4,440 Member
    #9
    sarea
    I'm sorry your diagnosis has led you to this website, but you will find it very helpful, I'm sure.

    As for seeking out specialists, I think in some cases of advanced anal cancer, that might be highly recommended. That being said, your case appears to be almost identical to mine, as I was staged on the fence between a 1 and a 2 with no lymph node involvement or mets. I was not on any support forums and had only limited knowledge of this cancer at the time, so I totally put my life in the hands of my doctors. I was referred by my colorectal doctor to a local medical oncologist. He is a brilliant man and had either had experience treating this cancer or had done his homework prior to my initial consultation. He studied carefully as to whether I should receive Cisplatin or Mitomycin and concluded that Mitomycin was the way to go, along with the standard 5FU. He referred me to an excellent radiation oncologist who was in my hometown and he was so well versed on this cancer, even though his specialty is treating prostate cancer. I never felt like my doctors weren't highly qualified to treat my cancer and, as my colorectal doctor explained to me, the treatment protocol is standard and can be done anywhere that has the right facility and equipment.

    I would pose this question to any of your doctors. "How many cases of anal cancer have you previously treated." If you are their first one, then you might want to consider going elsewhere. When you first meet with your doctors, YOU need to know ahead of time what the standard treatment protocol is, so get yourself educated. I highly recommend logging onto the website for the National Comprehensive Cancer Network (NCCN.org) and registering. You will then have access to the most up-to-date treatment guidelines for anal cancer. Read through them, print them out, and take them with you to your appts. If your doctors are on the same page, then I'm sure being treated locally will not be a problem. If they have a different treatment plan in mind that varies from the standard, I would seek a second opinion. Knowledge is power, so the more you know about this cancer, the better off you'll be IMO.

    I wish I had known SO much more in the beginning before I started my treatment because it would have made me more comfortable knowing my doctors were the best. But I had every bit of faith in them and they did not let me down. I am 4 years and 3 months post-treatment and am doing quite well, including running my first marathon last April! I sincerely hope that you have the same good fortune with excellent doctors and I wish you all the best! You will get through this!
  • sarea
    sarea Member Posts: 9
    #10
    mp327 said:

    sarea
    I'm sorry your diagnosis has led you to this website, but you will find it very helpful, I'm sure.

    As for seeking out specialists, I think in some cases of advanced anal cancer, that might be highly recommended. That being said, your case appears to be almost identical to mine, as I was staged on the fence between a 1 and a 2 with no lymph node involvement or mets. I was not on any support forums and had only limited knowledge of this cancer at the time, so I totally put my life in the hands of my doctors. I was referred by my colorectal doctor to a local medical oncologist. He is a brilliant man and had either had experience treating this cancer or had done his homework prior to my initial consultation. He studied carefully as to whether I should receive Cisplatin or Mitomycin and concluded that Mitomycin was the way to go, along with the standard 5FU. He referred me to an excellent radiation oncologist who was in my hometown and he was so well versed on this cancer, even though his specialty is treating prostate cancer. I never felt like my doctors weren't highly qualified to treat my cancer and, as my colorectal doctor explained to me, the treatment protocol is standard and can be done anywhere that has the right facility and equipment.

    I would pose this question to any of your doctors. "How many cases of anal cancer have you previously treated." If you are their first one, then you might want to consider going elsewhere. When you first meet with your doctors, YOU need to know ahead of time what the standard treatment protocol is, so get yourself educated. I highly recommend logging onto the website for the National Comprehensive Cancer Network (NCCN.org) and registering. You will then have access to the most up-to-date treatment guidelines for anal cancer. Read through them, print them out, and take them with you to your appts. If your doctors are on the same page, then I'm sure being treated locally will not be a problem. If they have a different treatment plan in mind that varies from the standard, I would seek a second opinion. Knowledge is power, so the more you know about this cancer, the better off you'll be IMO.

    I wish I had known SO much more in the beginning before I started my treatment because it would have made me more comfortable knowing my doctors were the best. But I had every bit of faith in them and they did not let me down. I am 4 years and 3 months post-treatment and am doing quite well, including running my first marathon last April! I sincerely hope that you have the same good fortune with excellent doctors and I wish you all the best! You will get through this!

    Thank you everyone
    I start out with four days chemo (5FU) with a pump, and first radiation treatment. I've had cancer before, but it was a weekly thing, not constant for 4 days. I never got sick, just got really mean, lol! The chemo about killed me too, ended up in the hospital for a month.

    So that's one more worry about the chemo, although my first cancer was 22 yrs ago and my chemo onc said they've come a long way since then. I hope they've come far enough along for me.

    The second dose of chemo is the met??? (can't remember offhand) in 29 or so days. That will be in 1 dose in a drip at the hospital cancer center part.

    Radiation for 5 or 6 weeks.

    Thank you

    Also, if I'm repeating myself it's because I already have brain fog from the extra calcium running through my blood. :-)
  • mp327
    mp327 Member Posts: 4,440 Member
    #11
    sarea said:

    Thank you everyone
    I start out with four days chemo (5FU) with a pump, and first radiation treatment. I've had cancer before, but it was a weekly thing, not constant for 4 days. I never got sick, just got really mean, lol! The chemo about killed me too, ended up in the hospital for a month.

    So that's one more worry about the chemo, although my first cancer was 22 yrs ago and my chemo onc said they've come a long way since then. I hope they've come far enough along for me.

    The second dose of chemo is the met??? (can't remember offhand) in 29 or so days. That will be in 1 dose in a drip at the hospital cancer center part.

    Radiation for 5 or 6 weeks.

    Thank you

    Also, if I'm repeating myself it's because I already have brain fog from the extra calcium running through my blood. :-)

    sarea
    I do believe that many things can be done these days to help patients tolerate chemo better. I was given a drug called Emend for nausea which was just 3 pills taken the first 3 days of chemo. At the time of infusion, I also got 2 drips for nausea before the Mitomycin was given. I was also prescribed Ativan and Phenergan for nausea relief to take as needed, which were very effective. As chemo drugs go, there are some that are much more side-effect prone than the ones used for anal cancer. However, it's still no picnic.

    I'm not sure I understand your question about the second dose of chemo. For anal cancer, standard treatment is chemo on days 1-4 and 29-32 concurrent with 5-6 weeks of radiation.

    This is a totally doable treatment, but it is certainly not fun. Some things you need to know are: 1) stay very well-hydrated; 2) rinse often with a solution of water and salt or baking soda to ward off mouth sores; 3) eat plenty of protein, including it in each meal or snack; 4) be sure to have all traces of any lotions, creams or gels removed completely from the treatment area before each radiation treatment. There are lots of tips and tricks one can use to get through this treatment. I hope our other members will chime in with more suggestions for you. We have all gotten through this and you will too!
  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    #12
    mp327 said:

    sarea
    I do believe that many things can be done these days to help patients tolerate chemo better. I was given a drug called Emend for nausea which was just 3 pills taken the first 3 days of chemo. At the time of infusion, I also got 2 drips for nausea before the Mitomycin was given. I was also prescribed Ativan and Phenergan for nausea relief to take as needed, which were very effective. As chemo drugs go, there are some that are much more side-effect prone than the ones used for anal cancer. However, it's still no picnic.

    I'm not sure I understand your question about the second dose of chemo. For anal cancer, standard treatment is chemo on days 1-4 and 29-32 concurrent with 5-6 weeks of radiation.

    This is a totally doable treatment, but it is certainly not fun. Some things you need to know are: 1) stay very well-hydrated; 2) rinse often with a solution of water and salt or baking soda to ward off mouth sores; 3) eat plenty of protein, including it in each meal or snack; 4) be sure to have all traces of any lotions, creams or gels removed completely from the treatment area before each radiation treatment. There are lots of tips and tricks one can use to get through this treatment. I hope our other members will chime in with more suggestions for you. We have all gotten through this and you will too!

    Sarena,
    Hi

    Just checking to make sure, that u will be getting the 5fu in the fanny Pack and that you will also be getting the mitomycin drip at the cheno facility the first day and this same protocol is followed for your second dose of chemo.
    That would be two different chemos each time.
    Good luck with your tx.
  • sarea
    sarea Member Posts: 9
    #13
    LaCh said:

    hyperparathyroidism
    I'm about to start chemo and radiation for a stage I or II anal tumor. In 2006 I was (finally) diagnosed with hyperparathyriodism. I'd had slightly elevated levels of blood calcium for many years that no one had diagnosed properly (which is no surprise to me, as someone with a pretty low opinion of western medicine and its practitiners). In any case, in relation to your question, I had surgery to remove a parathyroid tumor in 2006 (You probably already know that there are 4 parathyroid glands and that identifying the one with the tumor is of critical importance when removing it). The surgery was a day proceedure, it was done in a hospital under a local nerve block and light sedation, recovery was very easy and without event and best of all, as soon as the tumor was removed, the blood calcium levels dropped to normal. As a matter of fact, they kept me lying on the operating table in the OR while they ran the gland down to pathology to make sure that they;d removed the right one (their normal protocol). I'm very reluctant to give advice of any kind, not only here but in general, but maybe you might want to at least have a consult with an endocrinologist before you start Tx for the anal cancer, to see if excising the parathyroid tumor is a viable possibility before starting treatment for the anal cancer. For me, at least, the surgery was quick, easy, uncomplicated and had little or no effect on daily living and once the thing is gone, you don't have to think about it any more. It's just a thought.

    LaCh
    Yes, they're horrible on diagnosing that particular problem, I have my thoughts, but I will keep them to myself.
    I have felt really bad for maybe 4 yrs. It's gotten so bad now that I can't get out of bed without a ritalin and a pain pill. My onc said they're ok to keep taking, but I'm going to talk to him again in the morning.
    If I am diagnosed with it I have my surgeon picked out, but talk about bad timing! I had to trick my gp to get back to the ENT I had seen once before (I had to have a referral).
    Sounds like you had a good surgeon. The surgury is often quick and few after effects, but not always.

    This is what I've been wondering, hyperparathyroidism can eventually cause cancer. (?)

    Anyway, I'll have to go with what is set up, but will call my ENT before the pump is placed in the morning.

    Thank you for the information. I really appreciate it.
  • sarea
    sarea Member Posts: 9
    #14
    Phoebesnow said:

    Sarena,
    Hi

    Just checking to make sure, that u will be getting the 5fu in the fanny Pack and that you will also be getting the mitomycin drip at the cheno facility the first day and this same protocol is followed for your second dose of chemo.
    That would be two different chemos each time.
    Good luck with your tx.

    I'm confused too
    What both my husband and I understood is 4 days of 5FU starting tomorrow and then 1 day of the other miyomyvin drip around 29 days later, plus the radiation every day for 5-6 weeks. Seems to me like there should be a little more chemo but we may have misunderstood.

    I'll find out more tomorrow. The brain fog from the parathyroids is worse than the chemo fog I think; I've had both.
  • mp327
    mp327 Member Posts: 4,440 Member
    #15
    sarea said:

    I'm confused too
    What both my husband and I understood is 4 days of 5FU starting tomorrow and then 1 day of the other miyomyvin drip around 29 days later, plus the radiation every day for 5-6 weeks. Seems to me like there should be a little more chemo but we may have misunderstood.

    I'll find out more tomorrow. The brain fog from the parathyroids is worse than the chemo fog I think; I've had both.

    Chemo protocol
    If Mitomycin and 5FU are the two chemo drugs you will be receiving, they should be delivered as follows:

    Day 1: Mitomycin infusion in the chemo center
    5FU hook-up to pump that you will wear for a 96-hour infusion (days 1 through 4)
    Days 5 through 28: No chemo, but radiation daily Monday through Friday
    Day 29: Mitomycin infusion in the chemo center
    5FU hook-up to pump for another 96-hour infusion (days 29 through 32)

    If this is not the plan your oncologist has outlined for you, I would show him/her the NCCN guidelines. I am hoping this was just a misunderstanding and that your oncologist is familiar with the standard protocol.
  • sarea
    sarea Member Posts: 9
    #16
    mp327 said:

    Chemo protocol
    If Mitomycin and 5FU are the two chemo drugs you will be receiving, they should be delivered as follows:

    Day 1: Mitomycin infusion in the chemo center
    5FU hook-up to pump that you will wear for a 96-hour infusion (days 1 through 4)
    Days 5 through 28: No chemo, but radiation daily Monday through Friday
    Day 29: Mitomycin infusion in the chemo center
    5FU hook-up to pump for another 96-hour infusion (days 29 through 32)

    If this is not the plan your oncologist has outlined for you, I would show him/her the NCCN guidelines. I am hoping this was just a misunderstanding and that your oncologist is familiar with the standard protocol.

    mp327
    Yep! It was a misunderstanding! I feel much better knowing what its happening now and it is exactly like the one you just listed.
    Whoops, not exactly, I had some kind of anti-nausea and some kind of steroid, too. I'm planning on requesting all tests to know for sure. The mitomycin was one of the infusions, I had 4 in all.
    Then hooked upa to a 4-day pump of 5FU.
    It will be repeated in the way you described.
    I'm wondering how long this anti-nausea drip is supposed to work, because I'm not a bit sick/nauseated. Haven't been all day.
    First radiology treatment this afternoon.
    Feeling fine so far.
    Thanks
  • mp327
    mp327 Member Posts: 4,440 Member
    #17
    sarea said:

    mp327
    Yep! It was a misunderstanding! I feel much better knowing what its happening now and it is exactly like the one you just listed.
    Whoops, not exactly, I had some kind of anti-nausea and some kind of steroid, too. I'm planning on requesting all tests to know for sure. The mitomycin was one of the infusions, I had 4 in all.
    Then hooked upa to a 4-day pump of 5FU.
    It will be repeated in the way you described.
    I'm wondering how long this anti-nausea drip is supposed to work, because I'm not a bit sick/nauseated. Haven't been all day.
    First radiology treatment this afternoon.
    Feeling fine so far.
    Thanks

    sarea
    I'm glad to hear that day 1 went well for you. I too got a couple of anti-nausea drips prior to getting the Mitomycin--Aloxil and Decadron. I didn't have any nausea on day 1 either, but was very tired--probably more from all the anxiety than anything else. I was given some anti-nausea meds to have on hand at home for queasiness just in case. Did your docs give you anything for that? As for how long the anti-nausea IV meds last, I'm not sure. At any rate, I'm glad you are feeling fine so far!
  • sarea
    sarea Member Posts: 9
    #18
    sarea said:

    mp327
    Yep! It was a misunderstanding! I feel much better knowing what its happening now and it is exactly like the one you just listed.
    Whoops, not exactly, I had some kind of anti-nausea and some kind of steroid, too. I'm planning on requesting all tests to know for sure. The mitomycin was one of the infusions, I had 4 in all.
    Then hooked upa to a 4-day pump of 5FU.
    It will be repeated in the way you described.
    I'm wondering how long this anti-nausea drip is supposed to work, because I'm not a bit sick/nauseated. Haven't been all day.
    First radiology treatment this afternoon.
    Feeling fine so far.
    Thanks

    Owl Eyes
    It's after 11:00 pm and I'm wide awake. I was told that might be the case with the steroid. I took a xanax, which, when I mentioned it to the onc he didn't seem happy about the thought. I asked why and he said something like defeating the purpose? Now I'm wondering if that xanax took away what the steroid was supposed to do? Have I messed up already?

    Still not sick, but I'm going to try to sleep.
  • Marynb
    Marynb Member Posts: 1,118
    #19
    sarea said:

    Owl Eyes
    It's after 11:00 pm and I'm wide awake. I was told that might be the case with the steroid. I took a xanax, which, when I mentioned it to the onc he didn't seem happy about the thought. I asked why and he said something like defeating the purpose? Now I'm wondering if that xanax took away what the steroid was supposed to do? Have I messed up already?

    Still not sick, but I'm going to try to sleep.

    Sarea
    I hope you get some rest. Btw, I never had anti-nausea meds and never got sick at all. Don't expect it. It is probable that you will not get sick at all.
    Sleep well and I would listen to the docs about what to take.
  • mp327
    mp327 Member Posts: 4,440 Member
    #20
    sarea said:

    Owl Eyes
    It's after 11:00 pm and I'm wide awake. I was told that might be the case with the steroid. I took a xanax, which, when I mentioned it to the onc he didn't seem happy about the thought. I asked why and he said something like defeating the purpose? Now I'm wondering if that xanax took away what the steroid was supposed to do? Have I messed up already?

    Still not sick, but I'm going to try to sleep.

    sarea
    I'm presuming that the Xanax was something you had prior to diagnosis? At any rate, do not take ANYTHING, even vitamins or supplements, without first consulting your oncologist. Some drugs may interfere with the effectiveness of the chemo or worsen side effects. I hope you were finally able to sleep.
  • horsepad
    horsepad Member Posts: 146 Member
    #21
    specialists
    I am stage 4. lympth node involvement and mets to the liver. I did not seek a specialist because I am raising my grandchildren and would not leave them. I live in Ohio and would have had to travel to New York or Houston. Although I considered it, I am glad I didn't choose those hospitals because I would have been alone in a strange city. Initially I thought I could fly home on weekends but there is no way I could have withstood the plane trip. The cancer center I went to had only treated one other patient beside me (kinda scary) with stage 4 anal cancer (and his came back in year 3 of remission). I got a second opinion from the Cleveland Clinic and was told the treatment is protocal and would be the same no matter where I was treated. I choose treatment close to home with supervision of my case by the Cleveland Clinic. I have been in remission alittle over a year. I have had no lingering side effects from the treatment (other than chemo brain). I am fortunate that my insurance pays for 4 oncologists (2 oncolgists at the cancer center and 2 oncolgists at the Cleveland Cleinic and a liver surgeon to watch over me. I feel lucky that I have so many doctors keeping tabs on me, had I gone to New York or Houston I wouldn't have had so many doctors caring for me.

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