Onc appt on Tuesday

onlytoday
onlytoday Member Posts: 609 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi,

In the last 3 weeks I've had biopsies, blood work and a PET scan. I see my doc on Tuesday to get the story. A bit nervous because I don't know my fate yet.I know that one node has enlarged quite a bit, not painful at all, it just causes some harmless numbness. (per my other doc)I also have severe gastro intestinal symptoms and the usual NHL fatigue. I'm geared up and ready to fight if treatment is needed but I'm praying for more watchful waiting for about a million reasons. (Plenty of time later for treatment- and MAYBE a cure in the meantime??!!)

So my NHL family - I'll keep you posted on my results. It is a comfort knowing you are all there.

Prayers,

Donna

MZNHL Stage IV, May 2010, Rituximab 09/10. Watchful waiting since.

Comments

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #2
    Hang in there..
    Hi Donna,
    I'll be keeping you in my prayers, friend. Sounds like you have done everything needed during your watchful waiting time period and God willing, you will be able to continue on this path. I go in the first of April for a CT scan to look around and check if the Rituxan has been doing it's job. Been a year since my last scan, so the closer it gets, the more anxious I feel. I like you do not want to start any new chemo or change my routine, but if needed I will surely do whatever it takes to get things back in order. We just have to take it one day at a time and make the best of each day. Hang in there Donna, and we will all be praying for you. Much love...Sue (FNHL-2-3A-6/10)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #3
    Nervousness
    Donna,
    You are so right when you say the closer to the Drs. visit the more nervous we get. If we didn't then I would say something was wrong with us. I go thru the same thing. Its hell living like that but what can we do. I am also hoping for some kind of cure soon. Good Luck. We are all here for ya'. John
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #4
    keep the faith
    Try to stay positve, but there is nothing wrong with gearing up to fight! Good Luck Donna , keep us posted...... Vinny
  • miss maggie
    miss maggie Member Posts: 929
    #5
    anxious waiting
    Dear Donna,

    You really have been through the mill. The good news, if you can call it that?????????
    I would think having all these tests would give your doctor a clearer picture. Your doctor
    sounds very thorough. Considering all these tests, he or she will have the correct
    treatment for you if needed. Hopefully, as you say, no treatment. Watch and wait.

    It's been a long road. From remission for you back when. Yes, I remember. I will be thinking
    of you Tuesday and saying a prayer. It's always scary seeing our oncoligst. My appointment is
    Feb 6. I dread it.

    All my love Maggie
  • anliperez915
    anliperez915 Member Posts: 770
    #6
    Hi Donna
    Hi Donna,
    I'll be praying for you, that everything turn out well for you this Tuesday. Let your doc know about your intestinal symptoms just to make sure he/she checks that out. I too have had some problems and did let my new oncologist know about it (a little embarrassed but oh well). Take care of yourself and let us know how everything turns out...

    Sincerely,
    Liz
  • miss maggie
    miss maggie Member Posts: 929
    #7
    Liz is right
    Dear Donna,

    Yes, I would absolutely check your intestinal symptoms. Very important. For me, I have
    such a worry since my small bowel perforated caused by NHL. Forgive me, I don't mean to
    pass my fear to you. Hopefully it's nothing.

    Blessings and love to you. Love Maggie
  • onlytoday
    onlytoday Member Posts: 609 Member
    #8
    miss maggie said:

    Liz is right
    Dear Donna,

    Yes, I would absolutely check your intestinal symptoms. Very important. For me, I have
    such a worry since my small bowel perforated caused by NHL. Forgive me, I don't mean to
    pass my fear to you. Hopefully it's nothing.

    Blessings and love to you. Love Maggie

    Onc appt update! Good News!
    Hi all,

    Well I am one happy (and exhaused) person. NO TREATMENT needed!!!!!!!!!!!!!!!!!! Yay!!!!!!!!!!!

    The PET shows new activity in the groin, armpits, and neck- but the tumors aren't hurting me or affecting and major organs so we're good there for now. My blood work is off a bit as well- causing the ever present fatigue. I am having some night sweats. The growth of the tumors is slow and there is no evidence of transformed disease. So unless something changes with the blood work or my symptoms, we're okay waiting.

    So she doesn't feel that we need to rush to treatment. I have blood work in 3 months to carefully monitor all of it.

    I'm so relieved. She also said that she recently learned more about some state of the art treatment coming down the pike that involves pills!! (I don't have details) Not as toxic as our present offerings. Sounds good to me.

    I go to Sloan for my second opinion in February. I always do this (She talks to the doc at Sloan as needed) to make sure we are all on the same page.

    So more watchful waiting. An answer to my prayers.

    Thanks everybody for your prayers, good thoughts and support as always!!!

    love and prayers to all,
    Donna
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #9
    onlytoday said:

    Onc appt update! Good News!
    Hi all,

    Well I am one happy (and exhaused) person. NO TREATMENT needed!!!!!!!!!!!!!!!!!! Yay!!!!!!!!!!!

    The PET shows new activity in the groin, armpits, and neck- but the tumors aren't hurting me or affecting and major organs so we're good there for now. My blood work is off a bit as well- causing the ever present fatigue. I am having some night sweats. The growth of the tumors is slow and there is no evidence of transformed disease. So unless something changes with the blood work or my symptoms, we're okay waiting.

    So she doesn't feel that we need to rush to treatment. I have blood work in 3 months to carefully monitor all of it.

    I'm so relieved. She also said that she recently learned more about some state of the art treatment coming down the pike that involves pills!! (I don't have details) Not as toxic as our present offerings. Sounds good to me.

    I go to Sloan for my second opinion in February. I always do this (She talks to the doc at Sloan as needed) to make sure we are all on the same page.

    So more watchful waiting. An answer to my prayers.

    Thanks everybody for your prayers, good thoughts and support as always!!!

    love and prayers to all,
    Donna

    "YEAH"!!
    Hey Donna,
    Thats great news! No treatment sounds good to me! Maybe during your waiting time more news will come out on the pill form of chemo. I pray every day for something new and exciting to take place with cancer cures/treatments. Enjoy your good news and be happy!
    Much love...Sue (FNHL-2-3A-6/10)
  • miss maggie
    miss maggie Member Posts: 929
    #10
    onlytoday said:

    Onc appt update! Good News!
    Hi all,

    Well I am one happy (and exhaused) person. NO TREATMENT needed!!!!!!!!!!!!!!!!!! Yay!!!!!!!!!!!

    The PET shows new activity in the groin, armpits, and neck- but the tumors aren't hurting me or affecting and major organs so we're good there for now. My blood work is off a bit as well- causing the ever present fatigue. I am having some night sweats. The growth of the tumors is slow and there is no evidence of transformed disease. So unless something changes with the blood work or my symptoms, we're okay waiting.

    So she doesn't feel that we need to rush to treatment. I have blood work in 3 months to carefully monitor all of it.

    I'm so relieved. She also said that she recently learned more about some state of the art treatment coming down the pike that involves pills!! (I don't have details) Not as toxic as our present offerings. Sounds good to me.

    I go to Sloan for my second opinion in February. I always do this (She talks to the doc at Sloan as needed) to make sure we are all on the same page.

    So more watchful waiting. An answer to my prayers.

    Thanks everybody for your prayers, good thoughts and support as always!!!

    love and prayers to all,
    Donna

    Dear Donna
    I am so happy you are on watch and wait.

    Also, you are really taking care, and getting a second opinion on your first oncologist's
    plan for you.

    Donna, I live in Westchester, NY. Therefore, I have easy access to Sloan Kettering. For me,
    everything is stable right now. I have an appointment with my oncologist Feb 6, Monday. Hopefully, a Pet Scan will be offered to me. I have no idea what will show on the Scan.
    In the event things should change, and my doctor would suggest some sort of treatment. I
    would like also to get a second opinion. I know, I am being so negative. Anyway, is it
    possible to give me the name of the doctor you see at Sloan??? I hope you don't mind?
    I kinda always expected my DX to change. I just want to be prepared. Thank you so much.

    Keep us posted how things go with your other doctor at Sloan. Enjoy your good news.

    Prayers and Blessings to you. Maggie
  • anliperez915
    anliperez915 Member Posts: 770
    #11
    onlytoday said:

    Onc appt update! Good News!
    Hi all,

    Well I am one happy (and exhaused) person. NO TREATMENT needed!!!!!!!!!!!!!!!!!! Yay!!!!!!!!!!!

    The PET shows new activity in the groin, armpits, and neck- but the tumors aren't hurting me or affecting and major organs so we're good there for now. My blood work is off a bit as well- causing the ever present fatigue. I am having some night sweats. The growth of the tumors is slow and there is no evidence of transformed disease. So unless something changes with the blood work or my symptoms, we're okay waiting.

    So she doesn't feel that we need to rush to treatment. I have blood work in 3 months to carefully monitor all of it.

    I'm so relieved. She also said that she recently learned more about some state of the art treatment coming down the pike that involves pills!! (I don't have details) Not as toxic as our present offerings. Sounds good to me.

    I go to Sloan for my second opinion in February. I always do this (She talks to the doc at Sloan as needed) to make sure we are all on the same page.

    So more watchful waiting. An answer to my prayers.

    Thanks everybody for your prayers, good thoughts and support as always!!!

    love and prayers to all,
    Donna

    Hi Donna
    Hi Donna,
    Thank God that everything is still stable and you're gonna do more watchful waiting! I will still be praying for you that everything keeps going well for you. Take care of yourself and huge hug via internet.

    Sincerely,
    Liz
  • onlytoday
    onlytoday Member Posts: 609 Member
    #12
    miss maggie said:

    Dear Donna
    I am so happy you are on watch and wait.

    Also, you are really taking care, and getting a second opinion on your first oncologist's
    plan for you.

    Donna, I live in Westchester, NY. Therefore, I have easy access to Sloan Kettering. For me,
    everything is stable right now. I have an appointment with my oncologist Feb 6, Monday. Hopefully, a Pet Scan will be offered to me. I have no idea what will show on the Scan.
    In the event things should change, and my doctor would suggest some sort of treatment. I
    would like also to get a second opinion. I know, I am being so negative. Anyway, is it
    possible to give me the name of the doctor you see at Sloan??? I hope you don't mind?
    I kinda always expected my DX to change. I just want to be prepared. Thank you so much.

    Keep us posted how things go with your other doctor at Sloan. Enjoy your good news.

    Prayers and Blessings to you. Maggie

    Sloan Kettering Doc
    Maggie,


    More than pleased to recommend my doc at Sloan. Paul Hamlin. He is fabulous! Look him up and read his bio- very impressive and we are his specialty.

    Best of luck- please keep us posted on how things go.

    Thanks for the kind and supportive words. My next step is to eat well, exercise, rest and get in the best shape of my life. I want to be ready when the day comes that they want to put me in treatment.

    Love ya,
    Donna
  • po18guy
    po18guy Member Posts: 1,508 Member
    #13
    Clinical trials are the stepping stones across the stream
    Time works both for as well as against us. Against us, in that a recurrence or progression is more likely. It works for us in that there is a generation of cancer sufferers who are now moving from clinical trial to clinical trial to remain in some level of response. Although I am still on my first trial drug, there is a chance that I may have to move to another, as there just isn't much of a chemo option for me should I have to fight this a third time. Here's prayers of thanksgiving for your good news.
  • miss maggie
    miss maggie Member Posts: 929
    #14
    onlytoday said:

    Sloan Kettering Doc
    Maggie,


    More than pleased to recommend my doc at Sloan. Paul Hamlin. He is fabulous! Look him up and read his bio- very impressive and we are his specialty.

    Best of luck- please keep us posted on how things go.

    Thanks for the kind and supportive words. My next step is to eat well, exercise, rest and get in the best shape of my life. I want to be ready when the day comes that they want to put me in treatment.

    Love ya,
    Donna

    Thank you for doctor
    Dear Donna,

    I have no idea when I read your post stating " We are his speciality ". These words
    brought alittle giggle and smile on my face.

    I am so proud of you for following up on your health. I see other's on this site are
    doing the same.

    Yes, yes, eat well, exercise, and getting plenty of rest. Sounds like a good plan.
    How is your daughter doing after the wedding in October? Does she live far from you??

    Thank you, thank you for giving me your doctor's name.

    Love you also. Love Maggie
  • onlytoday
    onlytoday Member Posts: 609 Member
    #15
    miss maggie said:

    Thank you for doctor
    Dear Donna,

    I have no idea when I read your post stating " We are his speciality ". These words
    brought alittle giggle and smile on my face.

    I am so proud of you for following up on your health. I see other's on this site are
    doing the same.

    Yes, yes, eat well, exercise, and getting plenty of rest. Sounds like a good plan.
    How is your daughter doing after the wedding in October? Does she live far from you??

    Thank you, thank you for giving me your doctor's name.

    Love you also. Love Maggie

    The fabulous 60's
    Maggie,

    Dr. Hamlin is such a nice man and is extremely knowledgeable. If there is anyone more into 60 year old non-hodgkins people, I don't know who it would be!! Helping us is his life's work. :)

    The newlyweds are great! Very happy and healthy. They live in DC, about 3 1/2 hours from us. Not so bad. We see them every 6 weeks or so. My daughter asked me if we could have one of our "girls weekends" soon. We used to do this all the time at her place, now we'll have to figure something else out. We get together and go hiking, out to eat, get massages and watch bad tv and read US weekly. It's just great!

    Love, love love my son in law too. What a great man. They are just good for each other- what a great feeling to know that she found the right man to love!

    Thanks for asking and may God bless you.

    Love ya,
    Donna
  • miss maggie
    miss maggie Member Posts: 929
    #16
    onlytoday said:

    The fabulous 60's
    Maggie,

    Dr. Hamlin is such a nice man and is extremely knowledgeable. If there is anyone more into 60 year old non-hodgkins people, I don't know who it would be!! Helping us is his life's work. :)

    The newlyweds are great! Very happy and healthy. They live in DC, about 3 1/2 hours from us. Not so bad. We see them every 6 weeks or so. My daughter asked me if we could have one of our "girls weekends" soon. We used to do this all the time at her place, now we'll have to figure something else out. We get together and go hiking, out to eat, get massages and watch bad tv and read US weekly. It's just great!

    Love, love love my son in law too. What a great man. They are just good for each other- what a great feeling to know that she found the right man to love!

    Thanks for asking and may God bless you.

    Love ya,
    Donna

    Happy for you
    Dear Donna,

    Thank you so much for your support. There is so much I need to know. My
    learning experience from this site never ends.

    What good news also. As mother's, it is such a burden lifted knowing our
    children are well and happy. To have a son-in-law we can call son, is another
    blessing.

    I know you look forward to your special mom and daughter weekend. Your daughter
    sounds like a wonderful daughter. Through all our trials and worry, we are blessed
    with a wonderful family.

    You betcha, love you also and pray for you and all. Love Maggie

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