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Cabo?

245

Comments

  • Ree_Maryland
    Ree_Maryland Member Posts: 161
    Fox

    I am deeply sorry for your troubles. I do not write much on here, because I never know what to say, except hope all goes well and i am thinking of you.

  • Jojo61
    Jojo61 Member Posts: 1,309
    Srashedb said:

    Not me

    Jojo: it wasn't me who connected Cabo to Mexico; that would be sblairc who made the comment. I agree with you about this disease and the many paths the cancer follows, all seemingly different for every patient.

    i think the promise lies with immunotherapy and although Nivo is an immune drug, there are others just around the corner if only patients can hang in lo enough.

    my husband is currently playing wacka-mo with sporadic mets; had a small one on the spine which got zapped and a tiny one on the opposite adrenal gland which will also get zapped. After a CT scan and MRI, they cannot make an absolute finding that it is even cancer.

    our strategy is to avoid drugs as long as possible with the hope that a good one will come up; uscf has an immunotherapy center which is showing promise in early testing.

    hope you are well, JoJo

    Sarah

     

    Sarah

    Sorry for mixing you up....I believe I have mixed you two up before. Foot in Mouth

    I have been well - retiring in a few months!! - and husband is still not smoking Laughing and my health has been as good as can be expected. I noticed that you are not posting as much, and hope that it is because you are enjoying Hawaii (or any other lovely place) as much as possible. Missing your posts, though!

    Hugs

    Jojo

  • Srashedb
    Srashedb Member Posts: 482
    Jojo61 said:

    Sarah

    Sorry for mixing you up....I believe I have mixed you two up before. Foot in Mouth

    I have been well - retiring in a few months!! - and husband is still not smoking Laughing and my health has been as good as can be expected. I noticed that you are not posting as much, and hope that it is because you are enjoying Hawaii (or any other lovely place) as much as possible. Missing your posts, though!

    Hugs

    Jojo

    Not in Hawaii yet

    I have been reading posts but working a lot; I haven't posted much. We are planning a trip in July to Hawaii. Last time, our youngest son and fam joined us for 3 days and it was wonderful to have our granddaughters (3 and 2) enjoy the places their dad had once enjoyed.

    my husband had 5 radiaton treatments to a spot on the spine in March and is scheduled to see a radiation oncologist for a 1.3 cm spot on the Left adrenal gland. A CT and an MRI could not definitely say it is a met but it doesn't look benign and apparently it is not uncommon sinxe  adrenal is highly vascular.

    wgen do you 

  • Jojo61
    Jojo61 Member Posts: 1,309
    Srashedb said:

    Not in Hawaii yet

    I have been reading posts but working a lot; I haven't posted much. We are planning a trip in July to Hawaii. Last time, our youngest son and fam joined us for 3 days and it was wonderful to have our granddaughters (3 and 2) enjoy the places their dad had once enjoyed.

    my husband had 5 radiaton treatments to a spot on the spine in March and is scheduled to see a radiation oncologist for a 1.3 cm spot on the Left adrenal gland. A CT and an MRI could not definitely say it is a met but it doesn't look benign and apparently it is not uncommon sinxe  adrenal is highly vascular.

    wgen do you 

    Sarah

    Well it is very good to hear that you have been to Hawaii with your family and plan to go again in July. Sounds absolutely perfect!

    Sorry to hear that some mets have popped up for your husband. It does sound manageable at the moment, though - and no medications so far...impressive. But I know it can't be easy for this to keep showing up. I have recently had 2 little scares and biopsies and they were fine....and I know what I went through emotionally for those....so I can imagine what a scare these things are when they show up positive. But I know your husband is in good hands - yours!

    Don't work too hard!!

    Hugs

    Jojo

     

  • Jan4you
    Jan4you Member Posts: 1,327

    Fox

    I am deeply sorry for your troubles. I do not write much on here, because I never know what to say, except hope all goes well and i am thinking of you.

    Aww Foxy baby, sending you

    Aww Foxy baby, sending you healing thoughts, KINDNESS and HOPE

    for whatever is best for YOU!

    I just love you more... and more...and more... and more... and more...

    Jan

  • foxhd
    foxhd Member Posts: 3,181
    Jan4you said:

    Aww Foxy baby, sending you

    Aww Foxy baby, sending you healing thoughts, KINDNESS and HOPE

    for whatever is best for YOU!

    I just love you more... and more...and more... and more... and more...

    Jan

    Thank you

    sweetheart.

  • Footstomper
    Footstomper Member Posts: 1,237
    Jan4you said:

    Aww Foxy baby, sending you

    Aww Foxy baby, sending you healing thoughts, KINDNESS and HOPE

    for whatever is best for YOU!

    I just love you more... and more...and more... and more... and more...

    Jan

    Errm?

    Do you two need a room?

  • foxhd
    foxhd Member Posts: 3,181

    Errm?

    Do you two need a room?

    UPDATE!!

    Doc called this afternoon. Tumor board discussed my case again. Bottom line is that any and all options are available and up to me. I am arranging radiation at 8 am. Then I am going to stay on nivo for 6 weeks more. Then scan. I have support that the tumor flare is inflammatory and not growth. So,I may still be ok. If no improvement then I'll change course. The bottom line is that I am reaching maturity for a stage 4 kidney cancer patient who stabilizes for a while but then has progression. I have managed to get to 5 years and another 5 just is not likely. So I gamble a little differently now. My chips are on the table.

  • hardo718
    hardo718 Member Posts: 853
    foxhd said:

    UPDATE!!

    Doc called this afternoon. Tumor board discussed my case again. Bottom line is that any and all options are available and up to me. I am arranging radiation at 8 am. Then I am going to stay on nivo for 6 weeks more. Then scan. I have support that the tumor flare is inflammatory and not growth. So,I may still be ok. If no improvement then I'll change course. The bottom line is that I am reaching maturity for a stage 4 kidney cancer patient who stabilizes for a while but then has progression. I have managed to get to 5 years and another 5 just is not likely. So I gamble a little differently now. My chips are on the table.

    Excuse my ignorance please

    But would anti-inflammatories be of any help?  Not necessarily a medication, but diet?  Again, I apologize for my ignorance on this topic, just a thought.

    Hugs, thoughts and prayers,

    Donna~

  • foxhd
    foxhd Member Posts: 3,181
    hardo718 said:

    Excuse my ignorance please

    But would anti-inflammatories be of any help?  Not necessarily a medication, but diet?  Again, I apologize for my ignorance on this topic, just a thought.

    Hugs, thoughts and prayers,

    Donna~

    Donna

    I am currently on steroids for inflammation and it has relieved all pain. As to adding a diet componet of anti inflams, it would be a drop in the bucket. Besides it is far to late to use supplements to affect my prognosis. Living pure from day one is too difficult because of the chemicals we have absorbed in our life time. Our body is an enviornmental filter damaging our dna and random cell mutation happens. I exist at the stage of managing symptoms for as long as I can. And hopefully with as few side effects as possible. 3-4 years ago I said,"Bring it on!" Now I say, "Lets hang on as comfortably as I can."

    But NEVER count me out. I have remarkable healing powers. There is a loss from the battles but I tolerate a lot.

  • Airie
    Airie Member Posts: 45
    foxhd said:

    Donna

    I am currently on steroids for inflammation and it has relieved all pain. As to adding a diet componet of anti inflams, it would be a drop in the bucket. Besides it is far to late to use supplements to affect my prognosis. Living pure from day one is too difficult because of the chemicals we have absorbed in our life time. Our body is an enviornmental filter damaging our dna and random cell mutation happens. I exist at the stage of managing symptoms for as long as I can. And hopefully with as few side effects as possible. 3-4 years ago I said,"Bring it on!" Now I say, "Lets hang on as comfortably as I can."

    But NEVER count me out. I have remarkable healing powers. There is a loss from the battles but I tolerate a lot.

    Fox
    During the last few days

    Fox

    During the last few days I was in the hospital in Feb after my nephrectomy I read ALL the posts on this entire site. You have been through hell and back my friend. But you always come back. You are a inspiration to me to keep dredging through the mouth sores diarrhea insomnia nausea etc. I have no great words of wisdom for you. Just continue posting with your updates. You're important to more of us than you may realize. 

  • Jojo61
    Jojo61 Member Posts: 1,309
    Airie

    Well said!! Foxy is more important to all of us than he could possibly realize!

    Airie....wishing you a smooth and seamless recovery!

    Hugs

    Jojo

  • hardo718
    hardo718 Member Posts: 853
    Jojo61 said:

    Airie

    Well said!! Foxy is more important to all of us than he could possibly realize!

    Airie....wishing you a smooth and seamless recovery!

    Hugs

    Jojo

    Ditto to Airie's comments

    Fox....you're a keeper!

    Kiss Donna~

  • foxhd
    foxhd Member Posts: 3,181
    hardo718 said:

    Ditto to Airie's comments

    Fox....you're a keeper!

    Kiss Donna~

    Thanks Airie

    You guys too. Donna keep the faith. Jojo, You know where my head is at. Keep defying the odds. Airie, that's a lot of reading. Even if you just read mine. You must know stuff I've forgotten. I have an ability to let things go so that I don't dwell on them. So I forget things like esophogeal sores, skin peeling and sensitive hands and feet, etc. I couldn't imagine how many tumors I've had. Or the amount of radiation. And here I am. Out in the garage working on an old motorcycle. This ones for you Ron. I'm cleaning, painting, and rebuilding a vintage Honda. Doing it the way a kid builds a model car. Nothing fancy. Just bigger pieces. I'm having a ball.

  • angec
    angec Member Posts: 924
    foxhd said:

    Thank you

    sweetheart.

    So sorry to hear this foxy!

    So sorry to hear this foxy! How about the link I sent you? I really think you should look into it. I have bought some for  mysefl and for my son with ASD. He has shown some great results.  There are all kinds. One you can inhale in a nebulizer for the lungs mets.  Drops you can take orally, creams you can rub on and even injections. I cannot name the product here or i will be banned.  You know what i  am talking about.  Please, give it some thought, others have great results with it.

  • angec
    angec Member Posts: 924
    foxhd said:

    Thanks Airie

    You guys too. Donna keep the faith. Jojo, You know where my head is at. Keep defying the odds. Airie, that's a lot of reading. Even if you just read mine. You must know stuff I've forgotten. I have an ability to let things go so that I don't dwell on them. So I forget things like esophogeal sores, skin peeling and sensitive hands and feet, etc. I couldn't imagine how many tumors I've had. Or the amount of radiation. And here I am. Out in the garage working on an old motorcycle. This ones for you Ron. I'm cleaning, painting, and rebuilding a vintage Honda. Doing it the way a kid builds a model car. Nothing fancy. Just bigger pieces. I'm having a ball.

    Fox... that is great that the

    Fox... that is great that the growth is inflammation. That just might be the case.  So, was there also new growth or they think those nodes are just reactory? I am not going to count you out by any means. There are still too many other things to do.  

  • foxhd
    foxhd Member Posts: 3,181
    angec said:

    Fox... that is great that the

    Fox... that is great that the growth is inflammation. That just might be the case.  So, was there also new growth or they think those nodes are just reactory? I am not going to count you out by any means. There are still too many other things to do.  

    Ange,

    my scans lit up everywhere. Everywhere. Bones, lung, nodes. Like a field of dandelions.

  • marosa
    marosa Member Posts: 333
    foxhd said:

    Ange,

    my scans lit up everywhere. Everywhere. Bones, lung, nodes. Like a field of dandelions.

    Foxy, I love you to the moon and back...

     just don't tell your wife and I wont tell my husband!Kiss

      Summer will be here in no time so its a good thing you are working on that vintage Honda and probably shining that Harley of yours, and oh, remember to tune up the guitar for some good ol' blue grass playing!  As for the rest, not that I want to put a lot of pressure on you but you know how so many of us look up to you and care for you.  We are hoping, wishing, praying and sending good vibes that your treatment will have positive results this time around.  Im wishing with all my heart you have a good Summer like you did last year.

    Im having a difficult time lately with both my parents health so I come around not so often as usual.  I'll be checking on news from you. Please be well.

  • Eliezer2
    Eliezer2 Member Posts: 85
    cabo is new , from sutent family

    not sure how much track recod there is

  • angec
    angec Member Posts: 924
    foxhd said:

    Ange,

    my scans lit up everywhere. Everywhere. Bones, lung, nodes. Like a field of dandelions.

    Hmm.. makes me wonder what is

    Hmm.. makes me wonder what is going on.  That seems like too much for it to be cancer.  Must be inflammatory. Any side affects with the cabo?

     

     It looks like mom has to be removed from Votrient after almost 4 years. She was ned then a node will show, now show, show not show. Seems like the two that show on and off coincide with infections. So, votrient worked good in that matter. But, she has started to get brain symptoms, seeing people, talking to them etc. I a not sure if that could be the medicine. But, each time to refill it the pharmacy always asks if she is having mental issues.  Where is TW when you need him? He would know about that. Does anyone else have a clue? Mom is also 83 but it came on so suddenly it seems weird.

    I am praying for you, Fox.  Glad the pain is gone.  Keep us posted! ELF!  xxoo

  • foxhd
    foxhd Member Posts: 3,181
    Eliezer2 said:

    cabo is new , from sutent family

    not sure how much track recod there is

    cabo plan on hold

    Wow. This has been something. Sarah, I am betting my life on everything being inflammed. Many pow wow's with my care givers. Believe me when I tell newbies that I am so sorry that you are here. I know how scared you are. How do you make decisions?  I'll also tell you that after a while you get less frieghtened and much smarter. That may be it's own problem. It's a good thing that I feel ready to fight. I'm getting the sbrt/gamma knife to my spine. And 2 more nivo infusions then scan.  The radiation is mandatory. Neurosurgeon will do myelgram for mapping. Then it will be a one shot procedure. This is the second course thru my neck and the last.  Risks we won't bring up here.  I don't look forward to reliving last years struggle or worse. No options here. But I'm ready. Well, maybe more ready next week, or november, or never but I don't get to choose. I am playing my hand for extending quality of life. Cards are on the table.

  • APny
    APny Member Posts: 1,995
    foxhd said:

    cabo plan on hold

    Wow. This has been something. Sarah, I am betting my life on everything being inflammed. Many pow wow's with my care givers. Believe me when I tell newbies that I am so sorry that you are here. I know how scared you are. How do you make decisions?  I'll also tell you that after a while you get less frieghtened and much smarter. That may be it's own problem. It's a good thing that I feel ready to fight. I'm getting the sbrt/gamma knife to my spine. And 2 more nivo infusions then scan.  The radiation is mandatory. Neurosurgeon will do myelgram for mapping. Then it will be a one shot procedure. This is the second course thru my neck and the last.  Risks we won't bring up here.  I don't look forward to reliving last years struggle or worse. No options here. But I'm ready. Well, maybe more ready next week, or november, or never but I don't get to choose. I am playing my hand for extending quality of life. Cards are on the table.

    You're always in my

    You're always in my thoughts. I have the feeling those cards on the table will be a good hand!

  • sblairc
    sblairc Member Posts: 585
    Eliezer2 said:

    cabo is new , from sutent family

    not sure how much track recod there is

    Data showing it superior to Affinitor

    With regard to Cabozaitinib: I'm looking over my notes from Kidney Cancer Association conference in Los Angeles

    States "may eventually be a front line drug" and "superior to Affinitor" written down

  • Dave418
    Dave418 Member Posts: 95
    I'll wish you just one thing :

    I'll wish you just one thing: May those cards on the table be a Royal Straight Flush!!

    Good luck!! 

    Dave

  • Srashedb
    Srashedb Member Posts: 482
    foxhd said:

    cabo plan on hold

    Wow. This has been something. Sarah, I am betting my life on everything being inflammed. Many pow wow's with my care givers. Believe me when I tell newbies that I am so sorry that you are here. I know how scared you are. How do you make decisions?  I'll also tell you that after a while you get less frieghtened and much smarter. That may be it's own problem. It's a good thing that I feel ready to fight. I'm getting the sbrt/gamma knife to my spine. And 2 more nivo infusions then scan.  The radiation is mandatory. Neurosurgeon will do myelgram for mapping. Then it will be a one shot procedure. This is the second course thru my neck and the last.  Risks we won't bring up here.  I don't look forward to reliving last years struggle or worse. No options here. But I'm ready. Well, maybe more ready next week, or november, or never but I don't get to choose. I am playing my hand for extending quality of life. Cards are on the table.

    An interesting discussion today

     

    Smart patients has a very interesting article with Q and A's at a symposium in San diego which validates your current plan and what I have learned about TKIs for my husband .

    it was posted today and the symposium was this weekend.

    Sarah

  • Jojo61
    Jojo61 Member Posts: 1,309
    Dave418 said:

    I'll wish you just one thing :

    I'll wish you just one thing: May those cards on the table be a Royal Straight Flush!!

    Good luck!! 

    Dave

    Thinking about you, Foxy!

    Thinking about you, Foxy! Always! Don't flirt too much with those nurses....they don't need those distractions Wink

    Big hugs

    Jojo

  • Limelife50
    Limelife50 Member Posts: 476
    Eliezer2 said:

    cabo is new , from sutent family

    not sure how much track recod there is

    Wow

    Damm sorry Fox will keep my fingers crossed hope u are still eating good and keeping your weight up

  • foxhd
    foxhd Member Posts: 3,181
    Things can take so long

    I guess I'm halfway there. First, if the nivo isn't working, how come I feel so good? My activity and health are great. Food is so damn good. But, upper extremity pain and weakness are a problem, so, I look forward to next week when I get the SBRT to my spine.  I had a nivo infusion today and with it came a tumor flare up a couple hours later. I realize that I get many of these tumor flares. A month ago when I had my knee drained, it hemorraged because I was on coumadin. If I wasn't on coumadin, it would have just hurt. So we got a little misdirected because of the bleed. A couple days back I tossed some garbage and with it my shoulder. Same type of acute pain. So I may have this shoulder added to my radiation. Follow up scans won't be for 3-4 more weeks. Thats ok with me. One thing is for sure and that is that I don't really mind these acute episodes because otherwise I feel great. Not like the votrient where I was always sick. Pain has been manageable with a couple oxies a day and the occaisional trip to the dispensery.

  • foxhd
    foxhd Member Posts: 3,181
    foxhd said:

    Things can take so long

    I guess I'm halfway there. First, if the nivo isn't working, how come I feel so good? My activity and health are great. Food is so damn good. But, upper extremity pain and weakness are a problem, so, I look forward to next week when I get the SBRT to my spine.  I had a nivo infusion today and with it came a tumor flare up a couple hours later. I realize that I get many of these tumor flares. A month ago when I had my knee drained, it hemorraged because I was on coumadin. If I wasn't on coumadin, it would have just hurt. So we got a little misdirected because of the bleed. A couple days back I tossed some garbage and with it my shoulder. Same type of acute pain. So I may have this shoulder added to my radiation. Follow up scans won't be for 3-4 more weeks. Thats ok with me. One thing is for sure and that is that I don't really mind these acute episodes because otherwise I feel great. Not like the votrient where I was always sick. Pain has been manageable with a couple oxies a day and the occaisional trip to the dispensery.

    Also had a myelogram

    last week to add to the mapping for my sbrt. Now as a therapist, I've seen hundreds and hundreds of patients post myelogram. But I never had one. It was an awesome experience. I am very impressed. The big lesson here is the same that we discuss regarding finding a doctor who does a lot of nephrectomies, not 2 or 3 a year. This Dr. Johnson must do hundreds and hundreds. Anyway, the entire process went flawlessly. Whatever drugs they used were perfect. Went home a couple hours later with only a tiny band aid on the procedure site. I even drove home.  My biopsies a few years back should have been so easy.

  • pamstayner
    pamstayner Member Posts: 111
    Always learning from you

    Not sure what a myelogram is, so will look it all up.  If you treated patients after one, it might be something that if not done perfectly, it leaves one in pain?  

    I am also holding well with the Nivo and feel SO good.  I don't have anything but knee and shoulder pain a few days after, and although not really that awful, since I ordinarily feel SO good, it gives me something to complain about... 

    Isn't Cumadin the blood thinner you gotta get lots of blood test done often to keep the right dosage?  I think I remember that from taking care of my Aunt.  I am still taking twice a day Lovenox shots... bruises all over my middle are UGLY ugly... I want the PICC line out, but am told no because if there are clots attached, it would dislodge them.  Sounds fishy to me... the blood thinner is supposed to disolve any clots... and after a month I think I should be clear.  Oh well, what do I know... I'm just learning.

    My scan resutls and Oncolgoy appointment are May 26th.... looking for good stuff... and for you too...

     

    Be well Fox..... FLY