Update - Treatment plan set

ArchTB
ArchTB Member Posts: 150
edited March 2014 in Esophageal Cancer #1
Hi everyone,

I hope you had peaceful and enjoyable Christmas and I am wishing everyone a great new year full of good news.

I just wanted to post some updates on our status. I posted earlier about my husband, Tom, age 37, non-drinker, non-smoker, healthy-eater who was diagnozed with EC Stage III (T3 N1 M0) on December 8.

We have made some progress in lining up a team of specialists at Memorial Sloan Kettering and getting some more tests done. Following drs recommendation, he started eating everything he wants to instead of just veggies and fruits to gain weight. He was 154 lbs 10 days ago (-21 pound of his normal weight), but after switching to mac&cheese mashed potato diet, he is now 159. Still no red meat, just chicken and fish (he was a vegitarian for the last year). He has some difficulty swallowing, but still manages solid food. No apparent bleeding, no vomiting (sorry for details).

We are starting treatment on Monday, Jan 3. It will be chemo (cisplatin and irinotecan) once a week for 4 weeks with 1 week break in a middle, and then same chemo + radiation every day for 28 days. Surgery to follow 3-week break. We don't know yet if it would be MIE or Ivor Lewis. No post surgery treatment recommended, just the check ups. Tom wants to do 42 day Breuss Cancer fasting after he gains weight back and gets strong after the surgery.

We were told that this is a standard treatment protocol. How does this sound to you?

I have several other concerns. Tom has anemia, caused by tumor bleeding. He is taking iron pills daily, but his hemoglobin was extremely low yesterday and he got 2 units of blood transfusion (everything went well, no negative reaction). I am worried that his weakness caused by low blood count might contribute to chemo side effects. Drs say that he should be fine after the trasfusion and ready to start the treatment.

I am also feeling very uneasy about the drs pushing us to sign living will and consider sperm bank (we have no kids yet). It is probably also standard recommendation, but it makes me feel as if they are giving up on him already.

I do not have any specific questions. Probably just need some reassurance that everything is going to be alright.

Olya

Comments

  • rmitchell
    rmitchell Member Posts: 94
    #2
    Surgery
    My husband had surgery 3 weeks ago tomorrow. He had 28 days of radiation and 6 of Chemo before. The Surgery was successful and all the cancer is gone. Recovery is extremely slow, but everyday is a little better. He is on a liquid diet now and will advance to a soft diet Saturday. It is so hard to see your loved one go through this terrible cancer, but we are trusting in God to be with us. I will keep you in my prayers.
    Reba
  • ArchTB
    ArchTB Member Posts: 150
    #3
    rmitchell said:

    Surgery
    My husband had surgery 3 weeks ago tomorrow. He had 28 days of radiation and 6 of Chemo before. The Surgery was successful and all the cancer is gone. Recovery is extremely slow, but everyday is a little better. He is on a liquid diet now and will advance to a soft diet Saturday. It is so hard to see your loved one go through this terrible cancer, but we are trusting in God to be with us. I will keep you in my prayers.
    Reba

    Good!
    Reba, thank you for your comment. I am so glad to hear your husband is doing well! I am wishing him a fast recovery. I hope the diet switch would be successful and well acepted by his body. Have a very happy new year.

    Olya
  • Unknown
    Unknown
    #4
    This comment has been removed by the Moderator
  • ArchTB
    ArchTB Member Posts: 150
    #5
    unknown said:

    This comment has been removed by the Moderator

    You are right
    Thank you, William. I guess you are right, we should take it slow, one step at a time. As Woody Allen once said "if you want to make God laugh tell him about your plans".
    Have a very happy new year, and thank you for your continuous support.

    Olya
  • unclaw2002
    unclaw2002 Member Posts: 599
    #6
    Olya,
    Sounds like you are
    Olya,

    Sounds like you are getting ready to start a very busy 2011. You asked one question about donating your husband's sperm to a sperm bank. I had a friend several years ago whose husband had to undergo aggressive radiation and chemo and I remember the doctor's recommending that they bank the sperm so that once he was well if they still wanted to have children that they wouldn't have to worry about potential fertility problems related to the chemo and/or radiation. It sounds like the doctors are thinking about your future not writing him off.
    ________________________________________________________________________________________
    From http://www.livestrong.com/article/70454-longterm-effects-chemotherapy-radiation/

    Infertility
    " The cells of the reproductive system for both men and women are rapidly dividing cells, making them vulnerable to damage from both chemotherapy and radiation therapy. For men, chemotherapy treatments can cause permanent damage to the testes that produce the sperm as well as the sperm. Radiation to the area of the testes reduces the number and functionality of the present sperm. High doses of radiation can induce long-term effects. In both cases you may want to consult your doctor about freezing some of your sperm to ensure your ability to father children in the future.

    Chemotherapy can cause permanent damage to the ovaries, which are responsible for producing hormones essential to fertility. Radiation therapy to the pelvis region can cause women to experience signs of menopause, which may be long-term if the radiation dose is high."

    ______________________________________________________________________________________________

    Good luck and let us know who your treatment team is and how things are going.

    Best wishes,
    Cindy
  • sal314
    sal314 Member Posts: 599 Member
    #7
    I'm a little confused...
    if he is indeed bleeding because of the tumor they should do radiation to stop it. But in your post you said he wasn't bleeding. So...I'm a little confused (not hard for me!:)

    My father had the same issue early on. He had several transfusions and his hemogloblin kept falling dangereously low. If that keeps happening, I'd have them re-scan him and if they can find the source of the bleeding (sometimes, they never can), they should radiate the area. That is happened with my father.

    As for his low blood count and chemo side effects, they won't do chemo if his numbers aren't within a certain range. So...if he gets the go-ahead, his blood counts are fine.

    Will be praying for both of you.

    Blessings,
    Sally
  • ArchTB
    ArchTB Member Posts: 150
    #8
    unclaw2002 said:

    Olya,
    Sounds like you are
    Olya,

    Sounds like you are getting ready to start a very busy 2011. You asked one question about donating your husband's sperm to a sperm bank. I had a friend several years ago whose husband had to undergo aggressive radiation and chemo and I remember the doctor's recommending that they bank the sperm so that once he was well if they still wanted to have children that they wouldn't have to worry about potential fertility problems related to the chemo and/or radiation. It sounds like the doctors are thinking about your future not writing him off.
    ________________________________________________________________________________________
    From http://www.livestrong.com/article/70454-longterm-effects-chemotherapy-radiation/

    Infertility
    " The cells of the reproductive system for both men and women are rapidly dividing cells, making them vulnerable to damage from both chemotherapy and radiation therapy. For men, chemotherapy treatments can cause permanent damage to the testes that produce the sperm as well as the sperm. Radiation to the area of the testes reduces the number and functionality of the present sperm. High doses of radiation can induce long-term effects. In both cases you may want to consult your doctor about freezing some of your sperm to ensure your ability to father children in the future.

    Chemotherapy can cause permanent damage to the ovaries, which are responsible for producing hormones essential to fertility. Radiation therapy to the pelvis region can cause women to experience signs of menopause, which may be long-term if the radiation dose is high."

    ______________________________________________________________________________________________

    Good luck and let us know who your treatment team is and how things are going.

    Best wishes,
    Cindy

    Thanks
    Thank you Cindy. Have a happy holiday and a successful new year.
    Olya
  • ArchTB
    ArchTB Member Posts: 150
    #9
    sal314 said:

    I'm a little confused...
    if he is indeed bleeding because of the tumor they should do radiation to stop it. But in your post you said he wasn't bleeding. So...I'm a little confused (not hard for me!:)

    My father had the same issue early on. He had several transfusions and his hemogloblin kept falling dangereously low. If that keeps happening, I'd have them re-scan him and if they can find the source of the bleeding (sometimes, they never can), they should radiate the area. That is happened with my father.

    As for his low blood count and chemo side effects, they won't do chemo if his numbers aren't within a certain range. So...if he gets the go-ahead, his blood counts are fine.

    Will be praying for both of you.

    Blessings,
    Sally

    I am a bit confused too
    Sally, telling the truth I don't quite get it either. The doctors said that the tumor is bleeding, plus he has some peptic ulcers. However, we do not see any obvious signs of it except the blood count and weakness. He does not have any blood in his stool, nor does he vomit blood. May be it gets fully absorbed in the stomach?.. He was prescribed to take omeprazole to reduce bleeding of ulcers.

    I am going to ask the doctors about the radiation. Thank you for your advice!
    Best wishes for a healthy and peaceful new year.

    Olya
  • oriontj
    oriontj Member Posts: 375
    #10
    they're not giving up
    Sperm bank is a precaution in case the radiation does any damage not to mention the chemo..it sounds logical to me. This way when all is done, if you want children you can have them. Does this make sense?

    jan
  • sal314
    sal314 Member Posts: 599 Member
    #11
    ArchTB said:

    I am a bit confused too
    Sally, telling the truth I don't quite get it either. The doctors said that the tumor is bleeding, plus he has some peptic ulcers. However, we do not see any obvious signs of it except the blood count and weakness. He does not have any blood in his stool, nor does he vomit blood. May be it gets fully absorbed in the stomach?.. He was prescribed to take omeprazole to reduce bleeding of ulcers.

    I am going to ask the doctors about the radiation. Thank you for your advice!
    Best wishes for a healthy and peaceful new year.

    Olya

    My Father Didn't Have Any of Those Signs
    either! He was just tired and couldn't "get going". They then did a blood test and found his hemoglobin to be really low and came to the conclusion that he was bleeding internally somewhere. They also thought he may have a bleeding ulcer. But when they did a scope of his esophagus they found a small "mass". Since he had radiation treatment, his hemoglobin has remained within the "normal" range.

    If your insurance allows it, I'd definately have a second opinion and work-up done by a doctor who specializes in esophageal cancer and is affiliated with a major cancer center. EC is so agressive and it's imparative that you get the diagnoses correct before proceeding with treatment! JMO.

    Blessings,
    Sally

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