I got the appointments for my consultations

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Comments

  • HellieC
    HellieC Member Posts: 524 Member
    Ro10 said:

    Thank you everyone

    I appreciate the kind words and prayers.  I knew I could count on you for prayers.  I have my CAT scan at 8:00, see the surgeon at 10:30 and see the radiation onocologist at 1:00.  A full day.  We are staying at my sister's Thursday night, so we won't have to leave quite so early.  I'll see my other two sisters, too, so it will be a good distraction.  

    Helen I hope you hear soon that your cyber knife is going to be paid for.  Waiting is so hard.  

    Thanks again.  I'll let you know what I find out Friday.  Hope you are all having a good day.

    Thinking of you, Ro

    Thinking of you, Ro and hoping that your appointments went/are going well today. 

    My cyberknife funding was refused, so I am self funding (about $41K) and the whole process will start on 11th Sept.  Lots of scans etc first before the actual zapping starts!

    Kindest wishes

    Helen

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    TAyers said:

    Answer to prayer

    Ro, 

    I am so glad your able to be a candidate for the cyberknife, I will continue to pray for you. I admired your courage and realism. We have the same diagnosis and staging and so far 2 years out I am still NED. Take care! Enjoy your visit with family.

    Cyberknife

    Helen,

    I am sorry to hear that you will have to self-pay for the cyberknife treatment, but I am hoping that you respond beautifully to the treatment and that your health will improve.

    Best wishes to you,

    Cathy

  • kansasgal
    kansasgal Member Posts: 122 Member
    PRAYERS

    Prayers coming your way today - I started last night!

  • ConnieSW
    ConnieSW Member Posts: 1,677 Member
    kansasgal said:

    PRAYERS

    Prayers coming your way today - I started last night!

    Ro and Helen

    Will be waiting to hear how things went, Ro.  Helen, are there any agencies that help defray costs, even a little?

  • Ro10
    Ro10 Member Posts: 1,561 Member
    HellieC said:

    Thinking of you, Ro

    Thinking of you, Ro and hoping that your appointments went/are going well today. 

    My cyberknife funding was refused, so I am self funding (about $41K) and the whole process will start on 11th Sept.  Lots of scans etc first before the actual zapping starts!

    Kindest wishes

    Helen

    Helen

    Glad to hear you are proceeding with cyber knife, but so sorry you have to pay for it yourself.  It is so expensive.  We will be going through the treatments about the same time.  I get my mold made September 9 th.  Do you know how many treatments you will be getting?   Why lots of scans before the "zapping starts"?  He told me they will do scans during the treatments, but not with contrast.

    It will be interesting to compare our experiences.  I know they will be different since yours is the abdominal area and mine is the mediastinal area.

    I wish you the very best outcome.  You do remain in my prayers.  In peace and caring

  • HellieC
    HellieC Member Posts: 524 Member
    Ro10 said:

    Helen

    Glad to hear you are proceeding with cyber knife, but so sorry you have to pay for it yourself.  It is so expensive.  We will be going through the treatments about the same time.  I get my mold made September 9 th.  Do you know how many treatments you will be getting?   Why lots of scans before the "zapping starts"?  He told me they will do scans during the treatments, but not with contrast.

    It will be interesting to compare our experiences.  I know they will be different since yours is the abdominal area and mine is the mediastinal area.

    I wish you the very best outcome.  You do remain in my prayers.  In peace and caring

    Ro

    Well - what a coincidence that we are travelling a similar path at the same time!  I start with a consultation on 11th September, then it moves on from there, with MRI and CT scans first (I haven't had any scans for more than 3 months), and a procedure to insert gold seeds into the tumour, to act as markers.

    Once we get to the treatment phase, I am getting 5 fractions, over the course of 10 days, starting on 1st October.  Not quite sure what the dose of each fraction will be yet, as we need to see the scans and then make a decision, as there is a loop of bowel sitting adjacent to the tumour, which may mean we need to make a compromise on the dose to avoid damage to it. 

    It seems that we are both pathfinders for this particular treatment - let's hope it's a great success for us both.

    Wishing you a great result

    Helen xx

  • HellieC
    HellieC Member Posts: 524 Member
    ConnieSW said:

    Ro and Helen

    Will be waiting to hear how things went, Ro.  Helen, are there any agencies that help defray costs, even a little?

    Costs

    Unfortunately, although there are one or two charities which are able to help some people, the fact that I have some savings precludes me from getting any help in that direction.  But the decision is made, the monies have been paid, so it's all systems go!

    Kind regards

    Helen 

  • ConnieSW
    ConnieSW Member Posts: 1,677 Member
    HellieC said:

    Costs

    Unfortunately, although there are one or two charities which are able to help some people, the fact that I have some savings precludes me from getting any help in that direction.  But the decision is made, the monies have been paid, so it's all systems go!

    Kind regards

    Helen 

    Helen

    Then I shall look forward to hearing of excellant results for you.  You go, girl.

  • Ro10
    Ro10 Member Posts: 1,561 Member
    HellieC said:

    Ro

    Well - what a coincidence that we are travelling a similar path at the same time!  I start with a consultation on 11th September, then it moves on from there, with MRI and CT scans first (I haven't had any scans for more than 3 months), and a procedure to insert gold seeds into the tumour, to act as markers.

    Once we get to the treatment phase, I am getting 5 fractions, over the course of 10 days, starting on 1st October.  Not quite sure what the dose of each fraction will be yet, as we need to see the scans and then make a decision, as there is a loop of bowel sitting adjacent to the tumour, which may mean we need to make a compromise on the dose to avoid damage to it. 

    It seems that we are both pathfinders for this particular treatment - let's hope it's a great success for us both.

    Wishing you a great result

    Helen xx

    Helen

    Your treatment sounds much different from mine.  There was no mention of inserting " gold seeds" To act as markers.  It will just be radiation targeted at the lymph node.   I hope the "loop of bowel" does not cause any problems for you.  I know some who had the pelvic radiation had problems with their bowels during and after the radiation.  Luckily I never have  had any problems with my bowels.  I hope the same for you.  

    I wish you success with your treatment.  i will be anxious to hear how everything goes.  I will share my experience, too.  I read in your other post that money has been paid already.  My husband always says, you can't take it with you.  You remain in my prayers.

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    Ro10 said:

    Helen

    Your treatment sounds much different from mine.  There was no mention of inserting " gold seeds" To act as markers.  It will just be radiation targeted at the lymph node.   I hope the "loop of bowel" does not cause any problems for you.  I know some who had the pelvic radiation had problems with their bowels during and after the radiation.  Luckily I never have  had any problems with my bowels.  I hope the same for you.  

    I wish you success with your treatment.  i will be anxious to hear how everything goes.  I will share my experience, too.  I read in your other post that money has been paid already.  My husband always says, you can't take it with you.  You remain in my prayers.

    Good luck Hellie

      Your type of radiation sounds more like what my husband had for his prostate cancer, but what do I know? Those radiation onocologists have lots of tools and tricks up their sleeves to make radiation most effective while minimizing damage to surrounding tissues.   In the case of my husband, the gold beads were implanted in his prostate so they could know where to target the radiation and avoid bowel and bladder damage.  The hope in his case is that because his prostate cancer is slow growing, that radiation and hormone deprivation will kill off most if not all of it and at least keep it from advancing, and potentially cure him.   

    For whatever it's worth, I'm pleased (well, maybe that's the wrong word) that both you and Ro have something that can be treated and is known to respond to radiation. 

    Good luck to both of you. 

    Suzanne

  • ConnieSW
    ConnieSW Member Posts: 1,677 Member
    ConnieSW said:

    Helen

    Then I shall look forward to hearing of excellant results for you.  You go, girl.

    Helen and Ro

    Now I'm spending even more time online reading about this.  I may even wander over to the local college library and peruse nursing journals to get info from that perspective.  Anyway, I did see that areas can be retreated if needed.  I hope you will share your experiences in great detail.  I may be retired but I guess I'm still a nurse at heart.

  • Sisters three
    Sisters three Member Posts: 165 Member
    ConnieSW said:

    Helen and Ro

    Now I'm spending even more time online reading about this.  I may even wander over to the local college library and peruse nursing journals to get info from that perspective.  Anyway, I did see that areas can be retreated if needed.  I hope you will share your experiences in great detail.  I may be retired but I guess I'm still a nurse at heart.

    as others said BEST OF LUCK Helen and Ro!

    I will keep the both of you in thoughts and prayers!!

    Lisa

     

  • imackie48
    imackie48 Member Posts: 96
    Praying for you too.

    Ro, I hope if you have the surgery everything goes well and you can get ready for your yearly trip to Florida to enjoy the sunshine.

    ill be praying for you.

    my granddaughter came up to see me for her 2nd birthday. I had missed her so much since I can't travel yet, still battling with this terrible gastritis.

    take care Nod keep us posted,

    irene

  • Ro10
    Ro10 Member Posts: 1,561 Member
    imackie48 said:

    Praying for you too.

    Ro, I hope if you have the surgery everything goes well and you can get ready for your yearly trip to Florida to enjoy the sunshine.

    ill be praying for you.

    my granddaughter came up to see me for her 2nd birthday. I had missed her so much since I can't travel yet, still battling with this terrible gastritis.

    take care Nod keep us posted,

    irene

    Irene

    I am so sorry that you are still suffering with the gastritis.  I hope it gets better soon for you.  I hope you have found foods that you can eat, and you are not still losing weight.  Glad your granddaughter came to see you.  2 years old already, that is such a fun age.   I am sure she brightened your days while she was there.  I hope you will be able to travel to visit her soon.  

    I am not having surgery, but rather radiation treatments to the lymph node.  It is intense radiation, like cyber knife.  I will have ten treatments.  I start this Thursday on the 18 th.  The treatments are Mon - Fri.  

    I am not sure what the follow up will be, but we are still hoping to go to Florida around Nov. 1st.  I am hoping that scans in Florida will satisfy the radiation onocologist in St. Louis.  We got down to 39 degrees last night, so it is time to think about warmer weather.

    We went to 2 soccer games last night.  I have not been that cold in a long time .  It was rainy and so chilly.  But both teams won, so it was a good night.  

    Hope you continue to improve.  You remain in my thoughts and prayers.  In peace and caring.

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    Ro10 said:

    Irene

    I am so sorry that you are still suffering with the gastritis.  I hope it gets better soon for you.  I hope you have found foods that you can eat, and you are not still losing weight.  Glad your granddaughter came to see you.  2 years old already, that is such a fun age.   I am sure she brightened your days while she was there.  I hope you will be able to travel to visit her soon.  

    I am not having surgery, but rather radiation treatments to the lymph node.  It is intense radiation, like cyber knife.  I will have ten treatments.  I start this Thursday on the 18 th.  The treatments are Mon - Fri.  

    I am not sure what the follow up will be, but we are still hoping to go to Florida around Nov. 1st.  I am hoping that scans in Florida will satisfy the radiation onocologist in St. Louis.  We got down to 39 degrees last night, so it is time to think about warmer weather.

    We went to 2 soccer games last night.  I have not been that cold in a long time .  It was rainy and so chilly.  But both teams won, so it was a good night.  

    Hope you continue to improve.  You remain in my thoughts and prayers.  In peace and caring.

    Thinking of you, Helen & Ro

    Hi Helen & Ro,

    I have been reading all your very informative posts and just want you both to know that I am hoping you have fantastic, knock-the- socks-off-cancer results!

     Hugs to you,

    Cathy

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    Ro10 said:

    Irene

    I am so sorry that you are still suffering with the gastritis.  I hope it gets better soon for you.  I hope you have found foods that you can eat, and you are not still losing weight.  Glad your granddaughter came to see you.  2 years old already, that is such a fun age.   I am sure she brightened your days while she was there.  I hope you will be able to travel to visit her soon.  

    I am not having surgery, but rather radiation treatments to the lymph node.  It is intense radiation, like cyber knife.  I will have ten treatments.  I start this Thursday on the 18 th.  The treatments are Mon - Fri.  

    I am not sure what the follow up will be, but we are still hoping to go to Florida around Nov. 1st.  I am hoping that scans in Florida will satisfy the radiation onocologist in St. Louis.  We got down to 39 degrees last night, so it is time to think about warmer weather.

    We went to 2 soccer games last night.  I have not been that cold in a long time .  It was rainy and so chilly.  But both teams won, so it was a good night.  

    Hope you continue to improve.  You remain in my thoughts and prayers.  In peace and caring.

    Thinking of you, Helen & Ro

    Hi Helen & Ro,

    I have been reading all your very informative posts and just want you both to know that I am hoping you have fantastic, knock-the- socks-off-cancer results!

     Hugs to you,

    Cathy

     

    PS: Didn't mean to send this twice!!