Radiation Off the Table For Now

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Comments

  • Editgrl
    Editgrl Member Posts: 903 Member
    edited November 2016 #22
    I had been thinking about

    I had been thinking about something like this since last year, and wondering why more of this kind of testing isn't done as a matter of course.  It's pretty pricey, but...   I will certainly look into it.

    I am familiar with Life Extension, though I haven't explored their site extensively.  In fact, a friend just ordered a nutrient panel for me through their site.  As far as curcumin,  yes, indeed, I am on that currently.

    Thanks once again for all of your information.

    Now I'm off for some R&R for a few days, dancing my **** off!

  • beccabtown
    beccabtown Member Posts: 234
    Chris, I just saw this thread

    Chris, I just saw this thread. I'm sorry you have to face this and decide how to proceed. I hope your trips help clear your mind and give you strength to face the next steps.

    I'm still in frontline treatment and for some reason it makes me nervous when my doctor even mentions the possibility of having to switch chemo meds, so I can certainly understand your reaction to that suggestion. At the same time, I can see the logic of throwing something new at the cancer.

    I'll be thinking of you!

    Rebecca

     

  • henhill
    henhill Member Posts: 123
    edited November 2016 #24
    I am sorry to have say I am

    I am sorry to have say I am joining you on the same path.  I just saw my surgeon Thursday and she is recommending Chemo with the  carbo/taxol after waiting several months without treatment to see what was going on.  I started out feeling great, but have had increasing pain and nausea to the point where I guess I would have to say I welcome it.  I am devastated more about losing my hair again than anything else, but she tells me that this regimen has the best chance of working, and usually determines whether any of the other, down the line drugs, will work later on.  My lymphatic mass has increased and the CA 125 has shot up to 560, so she thinks we should start right away.  BTW- I was also told that radiation was not a good idea, we should work on the systemic fight.  I keep you in my thoughts during the journey.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited November 2016 #25
    Oh Henhill

    Oh Henhill

    I'm so sorry to hear this! You and Chris are both strong and will get through the treatments to fight this darn beast.

    I hate cancer!

    Please take care and come back often to let us know how you are doing.

    Love and Hugs,

    Cindi

  • Kvdyson
    Kvdyson Member Posts: 789
    henhill said:

    I am sorry to have say I am

    I am sorry to have say I am joining you on the same path.  I just saw my surgeon Thursday and she is recommending Chemo with the  carbo/taxol after waiting several months without treatment to see what was going on.  I started out feeling great, but have had increasing pain and nausea to the point where I guess I would have to say I welcome it.  I am devastated more about losing my hair again than anything else, but she tells me that this regimen has the best chance of working, and usually determines whether any of the other, down the line drugs, will work later on.  My lymphatic mass has increased and the CA 125 has shot up to 560, so she thinks we should start right away.  BTW- I was also told that radiation was not a good idea, we should work on the systemic fight.  I keep you in my thoughts during the journey.

    So very sorry to hear this

    So very sorry to hear this news, henill. Praying that it works for you this time and that you never have to undergo treatments again. Wishing you strength and comfort, Kim

  • BC Brady
    BC Brady Member Posts: 70
    edited November 2016 #27

    I haven't been on in a few days - and now to read your crappy news just makes me MAD! My reoccurrence is also in the lymph. What your doc said about having affected nodes that aren't lighting up is exactly what happened to me - but I only had 8 weeks before it came roaring back in several nodal areas - everywhere, even in my cervical spine. So take this as good news for you - fewer lighting up after a year - so maybe it's slower growing? Why in the world do they leave these decisions up to us?!?!

    Radiation has never been offered as an option for me, only chemo. For what it's worth, your onc may be hesitant about restarting carbo/taxol for the possible reaction. I did fine on front line carbo/taxol, then lasted only 3 rounds on the reoccurence before I became allergic. Come to find out, it's a "thing" that happens - you can become platinum resistant. Maybe she's saving those big guns for later? Doxil and gemzar were the easiest of all the chemos I've been on. Some weird stuff - a couple of mouth sores with the doxil and some skin irritation taken care of by Sarna cream. I had a preponderance of affected nodes in my left axillary - which as "luck" would have it, were removed when I had the lumpectomy 3 weeks ago. All pathology came back uterine metastisis - not a new primary breast cancer, and my conclusion is that I got a free operation due to a faulty biopsy that was suspicious. (normal protocol - would have not done a lumpectomy and treated with chemo only) Basically you are where I was a year ago. Now I'm on a targeted chemo called Lynparza that is suppposed to be targeting the brCA2 mutation and some others. I can't recall if you said they did any mutation study on your original tumor, but the brCA mutation didn't even show up in my original tumor - it showed up in my pre-trial testing of the axillary node genetics.

    The NCI-Match trial includes nodal disease - maybe that is something that would be available to you? It's national and has 24 'arms' to the trial. 22 arms are targeted chemo - works directly on your mutation, and 2 arms are immunotherapies. They do the pre-trial stuff to determine what arm you'll be in - if any. If you don't come up with any of the mutations they are fighting, then you don't get to be in the trial. For traditional chemo - it was described to me as a "cookbook". First you do this, then this, then this and so on. Next for me is topotican if I dont have good results with this Lynparza or get rejected from the NCI MATCH trial. It seems there's always the next recipe - so don't lose hope and Carpe Diem - it sounds like you are! Hope you have a good vacation and dance up a storm!

    Love, Billie 

    PS: just re-read your post - I did give the metformin a try for 4 months without any success that we could see. Also was on Avastin for 3 rounds, no adverse reactions for me. It's supposed to help with bloating. My insurance initially rejected the claim as it's 15k a treatment and is primarily an ovarian cancer drug. But for us with serous adenocarcinoma, it's also used. They eventually approved it upon resubmission.

  • BC Brady
    BC Brady Member Posts: 70
    henhill said:

    I am sorry to have say I am

    I am sorry to have say I am joining you on the same path.  I just saw my surgeon Thursday and she is recommending Chemo with the  carbo/taxol after waiting several months without treatment to see what was going on.  I started out feeling great, but have had increasing pain and nausea to the point where I guess I would have to say I welcome it.  I am devastated more about losing my hair again than anything else, but she tells me that this regimen has the best chance of working, and usually determines whether any of the other, down the line drugs, will work later on.  My lymphatic mass has increased and the CA 125 has shot up to 560, so she thinks we should start right away.  BTW- I was also told that radiation was not a good idea, we should work on the systemic fight.  I keep you in my thoughts during the journey.

    So sorry for your news!

    Good God - why is this so hard to kick? I know what you mean by welcoming the treatment - anything to get rid of the discomfort - even replacing one discomfort with another. The hair thing IS devastating, I agree. And as much as I thought I could rock the scarf, I am too old and wrinkly to pull it off. I found a great place for affordable wigs tho - QVC! I buy the "Hairdo" name brand and love how light and comfortable they are. They let you send them back if not satisfied - and I've sent back plenty. Found a style that works for me and I even did a little trim on one to change it up a little. You are going to hammer those nodes - again - and your next scan will be better. So Hang on - get a new cute wig and some dangly earrings, eat ice cream or whatever makes you happy - xoxox, Billie

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited November 2016 #29
    henhill said:

    I am sorry to have say I am

    I am sorry to have say I am joining you on the same path.  I just saw my surgeon Thursday and she is recommending Chemo with the  carbo/taxol after waiting several months without treatment to see what was going on.  I started out feeling great, but have had increasing pain and nausea to the point where I guess I would have to say I welcome it.  I am devastated more about losing my hair again than anything else, but she tells me that this regimen has the best chance of working, and usually determines whether any of the other, down the line drugs, will work later on.  My lymphatic mass has increased and the CA 125 has shot up to 560, so she thinks we should start right away.  BTW- I was also told that radiation was not a good idea, we should work on the systemic fight.  I keep you in my thoughts during the journey.

    SO Sorry Henhill!!!!

    What rotten news- this stuff is like crazy glue- it just sticks around!  URGH! 

    It is so awful losing our hair!  I hope you find something you enjoy wearing. 

    Adding my voice to the chorus of prayers for you <3<3  (((HUGS)))

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited November 2016 #30
    BC Brady said:

    I haven't been on in a few days - and now to read your crappy news just makes me MAD! My reoccurrence is also in the lymph. What your doc said about having affected nodes that aren't lighting up is exactly what happened to me - but I only had 8 weeks before it came roaring back in several nodal areas - everywhere, even in my cervical spine. So take this as good news for you - fewer lighting up after a year - so maybe it's slower growing? Why in the world do they leave these decisions up to us?!?!

    Radiation has never been offered as an option for me, only chemo. For what it's worth, your onc may be hesitant about restarting carbo/taxol for the possible reaction. I did fine on front line carbo/taxol, then lasted only 3 rounds on the reoccurence before I became allergic. Come to find out, it's a "thing" that happens - you can become platinum resistant. Maybe she's saving those big guns for later? Doxil and gemzar were the easiest of all the chemos I've been on. Some weird stuff - a couple of mouth sores with the doxil and some skin irritation taken care of by Sarna cream. I had a preponderance of affected nodes in my left axillary - which as "luck" would have it, were removed when I had the lumpectomy 3 weeks ago. All pathology came back uterine metastisis - not a new primary breast cancer, and my conclusion is that I got a free operation due to a faulty biopsy that was suspicious. (normal protocol - would have not done a lumpectomy and treated with chemo only) Basically you are where I was a year ago. Now I'm on a targeted chemo called Lynparza that is suppposed to be targeting the brCA2 mutation and some others. I can't recall if you said they did any mutation study on your original tumor, but the brCA mutation didn't even show up in my original tumor - it showed up in my pre-trial testing of the axillary node genetics.

    The NCI-Match trial includes nodal disease - maybe that is something that would be available to you? It's national and has 24 'arms' to the trial. 22 arms are targeted chemo - works directly on your mutation, and 2 arms are immunotherapies. They do the pre-trial stuff to determine what arm you'll be in - if any. If you don't come up with any of the mutations they are fighting, then you don't get to be in the trial. For traditional chemo - it was described to me as a "cookbook". First you do this, then this, then this and so on. Next for me is topotican if I dont have good results with this Lynparza or get rejected from the NCI MATCH trial. It seems there's always the next recipe - so don't lose hope and Carpe Diem - it sounds like you are! Hope you have a good vacation and dance up a storm!

    Love, Billie 

    PS: just re-read your post - I did give the metformin a try for 4 months without any success that we could see. Also was on Avastin for 3 rounds, no adverse reactions for me. It's supposed to help with bloating. My insurance initially rejected the claim as it's 15k a treatment and is primarily an ovarian cancer drug. But for us with serous adenocarcinoma, it's also used. They eventually approved it upon resubmission.

    Ahh Billie-

    You are such a dear heart- thank you SO MUCH for continuing to share with us all your journey!!  Continued prayers for you <3<3  (((HUGS)))

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited November 2016 #31
    henhill said:

    I am sorry to have say I am

    I am sorry to have say I am joining you on the same path.  I just saw my surgeon Thursday and she is recommending Chemo with the  carbo/taxol after waiting several months without treatment to see what was going on.  I started out feeling great, but have had increasing pain and nausea to the point where I guess I would have to say I welcome it.  I am devastated more about losing my hair again than anything else, but she tells me that this regimen has the best chance of working, and usually determines whether any of the other, down the line drugs, will work later on.  My lymphatic mass has increased and the CA 125 has shot up to 560, so she thinks we should start right away.  BTW- I was also told that radiation was not a good idea, we should work on the systemic fight.  I keep you in my thoughts during the journey.

    Henhill, I'm so sorry to hear this. It's bad enough getting the "C" word applied to us the first time, but I'm thinking the "R" word is just as devastating. It just sucks!!! I am so mad for you, Chris, and Billie right now. Prayers for peace, courage, and success for all of you!

  • henhill
    henhill Member Posts: 123
    Thank you ladies

    Thank you ladies

    Thanks to all who have offered advice and condolences.  I am so glad to have found this group where everyone knows your pain along the via dolorosa.  I am also grateful for all the tidbits of advice and experience that offers whatever lift there is.  The doctors have no time for it and I live in a rural area where there are no UPSC patients out this way to commiserate with and learn from.  Please know that as I learn who the different folks are, I keep your struggles in my heart as well.

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    henhill said:

    I am sorry to have say I am

    I am sorry to have say I am joining you on the same path.  I just saw my surgeon Thursday and she is recommending Chemo with the  carbo/taxol after waiting several months without treatment to see what was going on.  I started out feeling great, but have had increasing pain and nausea to the point where I guess I would have to say I welcome it.  I am devastated more about losing my hair again than anything else, but she tells me that this regimen has the best chance of working, and usually determines whether any of the other, down the line drugs, will work later on.  My lymphatic mass has increased and the CA 125 has shot up to 560, so she thinks we should start right away.  BTW- I was also told that radiation was not a good idea, we should work on the systemic fight.  I keep you in my thoughts during the journey.

    So very sorry

    i don't know which is harder to hear. That you have cancer or that you have a recurrence.  Both are heart breaking.  But what I do know is that there is always hope.  Many, many prayers headed your way.  Glad we all have each other to lean on.

    Hugs and prayers, Lou Ann