Recurrent cervical cancer

13

Comments

  • ccfighter
    ccfighter Member Posts: 476
    May1976 said:

    Abdominal pain with recurrent cervical cancer

    I am new to this site.  I did not know that these sites existed.  I have all these things happening and did not have anyone to talk to that knows what I am going through, though at the same time I am sorry that others have to go through this terrible disease.   I was diagnosed with stage IB1 squamous cell carcinoma of my cervix in November 2009 and underwent a radical hysterectomy.  At that time I went through chemo radiation treatments.  I was okay for a year and then in March 2011 the cancer came back.  I completed 10 cycles of chemo at md Anderson but then had to stop because of blockages And the excrutiating pain that came with them.  The next couple of scans came out clean but then this past September they did a biopsy on my ovaries and it came back as metastatic  squamous cell carcinoma.  They were unable to do surgery because the tumors that are on my ovaries and blader are also stuck to blood vessels.  I am getting attacks of unbearable pains in my abdominal area.  It feels like it did when I had the blockages, but the doctors say I don't.  It feels like the worst gas pains in your life, my stomache feels very bloated, i can't go to the bathroom and no amount of pain medication helps.  i have to go to the ER, and only after they put in a catheter and I am on IV pain meds for a couple of days does the pain subside.   I go home for a few days and then it starts again and I am back in the hospital.  Has anyone had this happen to them and found a solution?  The doctors say I need to have chemo again, but if I am getting these attacks without chemo I am terrified of what will happen with chemo.  Any advice would be appreciated.  

    Hi May 1976.  I am sorry that

    Hi May 1976.  I am sorry that you are in so much pain.  I personally have not experienced the kind of pain you are talking about.  Have they considered radiation to ease the pain since they can not do surgery?  Have they suggested you keep the catheter in at home for a while so they can come up with a better way to manage your pain?  I hope that you get this resolved soon.  (((hugs)))

  • ccfighter
    ccfighter Member Posts: 476
    HavE decided to go with

    HavE decided to go with radiation over surgery.  Finally got a chance to talk to radiation oncologist who thinks this tumor was not in the radiation field and that he could apply electron radiation to the area and complete in a matteroff 5 days.  So,still waiting on the chemo sensitivity test to know the type of chemoJill be getting and will take it from there.  Hugs to all.

  • kimmiehedg
    kimmiehedg Member Posts: 27
    ccfighter said:

    HavE decided to go with

    HavE decided to go with radiation over surgery.  Finally got a chance to talk to radiation oncologist who thinks this tumor was not in the radiation field and that he could apply electron radiation to the area and complete in a matteroff 5 days.  So,still waiting on the chemo sensitivity test to know the type of chemoJill be getting and will take it from there.  Hugs to all.

    I think thats a good choice. 

    I think thats a good choice.  I just got the results from my scan from my 12/10 surgery......large tumor that was the problem last time looks bigger but dr said that he believes it is dead tissue and just swollen right now from the high dose radiation during surgery.   I do have 2 new spots, one that is a concern to him, so I will get pet scan 1/30.  I never asked until this last visit if this was incurable and he said yes and stupid me asked what is the typical life span........1 year!!!  i year!!   What am I supposed to do with this?????  I'm so sad I dont even know what to do.....................

     

     

     

     

     

     

     

     

     

     

     

     

  • ccfighter
    ccfighter Member Posts: 476

    I think thats a good choice. 

    I think thats a good choice.  I just got the results from my scan from my 12/10 surgery......large tumor that was the problem last time looks bigger but dr said that he believes it is dead tissue and just swollen right now from the high dose radiation during surgery.   I do have 2 new spots, one that is a concern to him, so I will get pet scan 1/30.  I never asked until this last visit if this was incurable and he said yes and stupid me asked what is the typical life span........1 year!!!  i year!!   What am I supposed to do with this?????  I'm so sad I dont even know what to do.....................

     

     

     

     

     

     

     

     

     

     

     

     

    Kimmie, I'm sorry,
     
    But

    Kimmie, I'm sorry,

     

    But doctors can't predict the future and treatment can keep this disease at bay for much long than a year.  There are so many new therapies being researched right now and I know there will be a cure for this soon.  Did your doctor mention an clinical trials or any other treatment plan to you?  You should ask him to get the caris testing done to see what chemos will be most effective on your cancer.

    Where are these new spots?  I hope the pet/ct  show's them to be benign.  Keep up the fight.  You can beat this.  You are strong.

  • kimmiehedg
    kimmiehedg Member Posts: 27
    ccfighter said:

    Kimmie, I'm sorry,
     
    But

    Kimmie, I'm sorry,

     

    But doctors can't predict the future and treatment can keep this disease at bay for much long than a year.  There are so many new therapies being researched right now and I know there will be a cure for this soon.  Did your doctor mention an clinical trials or any other treatment plan to you?  You should ask him to get the caris testing done to see what chemos will be most effective on your cancer.

    Where are these new spots?  I hope the pet/ct  show's them to be benign.  Keep up the fight.  You can beat this.  You are strong.

    I know they can't but it's so

    I know they can't but it's so scary to know that poeple with this type of recurrent cancer typically only live 1 year.........it just kind of is that blow that needs alot of getting up from! 

    You are radiating where your tumor was found right?  Did you do the caris testing to see what kind of chemo works best for your cancer?  Has your doctor said anything to you about survival, etc???

    Have yo been feeling better?  I was flipping through this new macrobiotic diet book and flipped to this page that says that marijuana is known to slow the growth rate of cancer cells.................I don't smoke the stuff but I told my husband I may have to give it a try! 

    But seriously, please keep me posted on you and your atest treatments.  I think if we all share our different findings, it's got pay or=ff right??? 

    Thanks for all your support.  Biggest hugs to you !!!

     

  • ccfighter
    ccfighter Member Posts: 476

    I know they can't but it's so

    I know they can't but it's so scary to know that poeple with this type of recurrent cancer typically only live 1 year.........it just kind of is that blow that needs alot of getting up from! 

    You are radiating where your tumor was found right?  Did you do the caris testing to see what kind of chemo works best for your cancer?  Has your doctor said anything to you about survival, etc???

    Have yo been feeling better?  I was flipping through this new macrobiotic diet book and flipped to this page that says that marijuana is known to slow the growth rate of cancer cells.................I don't smoke the stuff but I told my husband I may have to give it a try! 

    But seriously, please keep me posted on you and your atest treatments.  I think if we all share our different findings, it's got pay or=ff right??? 

    Thanks for all your support.  Biggest hugs to you !!!

     

    It is scary.  I spend all day

    It is scary.  I spend all day researching but really just end up spinning in circles.  And definitely sharing information gives up much needed options, support, ect.  One doctor doesn't know everything.  Perhaps pooling all the doctors ideas gives us a better way to form our own opinions on treatment options.  

    Yes I will be having radiation to the area in the pelvis where the tumor is located.  I will also be doing systemic chemo but the caris report is not in yet and so don't know what that will be.  Not looking forward to any of it.  Been there.  Done that.  Don't want to go back.  But...don't know what else to do.  Mostly I get tired and my eyes hurt.  Recently my upper gastric region has been hurting.  I don't know why.

    My doctor said my prognosis is not good.  10% at best.  Really, she is being optimistic by saying that.  I've read.  I know.  This sucks.

    I have heard about marijuana slowing cancer progression.  I smoked a little while under going treatments before but don't handle it real well.  Makes me really anxious.  Too bad the same cant be said for cigarettes.  I used to smoke those with no problems.

    Curcurm, omega 3's for fish oils, ginger, mushrooms all have properties to slow cancer growth.  

    Where is the location of the new spots your doctor is worried about?

  • kimmiehedg
    kimmiehedg Member Posts: 27
    ccfighter said:

    It is scary.  I spend all day

    It is scary.  I spend all day researching but really just end up spinning in circles.  And definitely sharing information gives up much needed options, support, ect.  One doctor doesn't know everything.  Perhaps pooling all the doctors ideas gives us a better way to form our own opinions on treatment options.  

    Yes I will be having radiation to the area in the pelvis where the tumor is located.  I will also be doing systemic chemo but the caris report is not in yet and so don't know what that will be.  Not looking forward to any of it.  Been there.  Done that.  Don't want to go back.  But...don't know what else to do.  Mostly I get tired and my eyes hurt.  Recently my upper gastric region has been hurting.  I don't know why.

    My doctor said my prognosis is not good.  10% at best.  Really, she is being optimistic by saying that.  I've read.  I know.  This sucks.

    I have heard about marijuana slowing cancer progression.  I smoked a little while under going treatments before but don't handle it real well.  Makes me really anxious.  Too bad the same cant be said for cigarettes.  I used to smoke those with no problems.

    Curcurm, omega 3's for fish oils, ginger, mushrooms all have properties to slow cancer growth.  

    Where is the location of the new spots your doctor is worried about?

    My mom took me to a faith

    My mom took me to a faith healer last weekend and said I need to be on vitamon D 10,000 units a day immediately and also gave me this recipe that supposedly dries up cancer cells.    You take 4 dark purple egglplants, cut off greens, slice into 6 pcs each and add 2 gallons of water.  Brig to a rapid boil and boil for 2 hours.  Take off heat and let sit for 6 hours and strain.  When cool transfer to a jug.  Drink 3 oz in the am on an empty stomach and 3 oz befre bed every day.  The active enzyme solasodine glycoside in this is supposed to dry up your cancer cells.  Take this until you have no trace of cancer left in yur body.  Worth a try, you think?

    I'm not sure where they are....I kind of zoned out after he said I had 2 new spots.  I think he said one where some where around my bowel or someting and that is probably what has been causing my pain for the past few months but its just popping up now.

    Listen, if you every want to talk, cry or anything, you can ALWAYS call me day or night.  My cell is 216-240-7404.

    Lets beat thsis nasty thing!  I kow you arent up for those treatments again.....I most certainly dont blame you but hang in there.......your a =one tough cookie!!!!

     

    Kim

     

  • ccfighter
    ccfighter Member Posts: 476

    My mom took me to a faith

    My mom took me to a faith healer last weekend and said I need to be on vitamon D 10,000 units a day immediately and also gave me this recipe that supposedly dries up cancer cells.    You take 4 dark purple egglplants, cut off greens, slice into 6 pcs each and add 2 gallons of water.  Brig to a rapid boil and boil for 2 hours.  Take off heat and let sit for 6 hours and strain.  When cool transfer to a jug.  Drink 3 oz in the am on an empty stomach and 3 oz befre bed every day.  The active enzyme solasodine glycoside in this is supposed to dry up your cancer cells.  Take this until you have no trace of cancer left in yur body.  Worth a try, you think?

    I'm not sure where they are....I kind of zoned out after he said I had 2 new spots.  I think he said one where some where around my bowel or someting and that is probably what has been causing my pain for the past few months but its just popping up now.

    Listen, if you every want to talk, cry or anything, you can ALWAYS call me day or night.  My cell is 216-240-7404.

    Lets beat thsis nasty thing!  I kow you arent up for those treatments again.....I most certainly dont blame you but hang in there.......your a =one tough cookie!!!!

     

    Kim

     

    My mom has been trying toget

    My mom has been trying toget me to an energy healer.  I'm game, it just hasn't paned out.  Do you watch through the worm hole with Morgan freeman on the science channel?  There was an episode where science proved that daily meditation and energy work can alter genes and can be used for self healing. Worth a try.

    Please edit your last post and remove your phone number.  This is a public forum and now anyone can see it.  Send me a PM with your number.  I'd love to talk.  I'll send you a PM in case you don't know how.  

    Id find out exactly where these new spots are and if they can be surgically removed.  With the abdominal tumor I had it was resting on part of my small bowel and where they were touching was removed also.  So, bowels can be resected.  If they asame all, the sooner the better to get them out.  Surgery sucks but it's our best chance.

    I love eggplant.  Certainly worth a try.

    Also, caffeine, melatonin and red wine.  Which makes me happy.  Wouldn't want to live without coffee and wine.

    Hang in there.

  • kimmiehedg
    kimmiehedg Member Posts: 27
    ccfighter said:

    It is scary.  I spend all day

    It is scary.  I spend all day researching but really just end up spinning in circles.  And definitely sharing information gives up much needed options, support, ect.  One doctor doesn't know everything.  Perhaps pooling all the doctors ideas gives us a better way to form our own opinions on treatment options.  

    Yes I will be having radiation to the area in the pelvis where the tumor is located.  I will also be doing systemic chemo but the caris report is not in yet and so don't know what that will be.  Not looking forward to any of it.  Been there.  Done that.  Don't want to go back.  But...don't know what else to do.  Mostly I get tired and my eyes hurt.  Recently my upper gastric region has been hurting.  I don't know why.

    My doctor said my prognosis is not good.  10% at best.  Really, she is being optimistic by saying that.  I've read.  I know.  This sucks.

    I have heard about marijuana slowing cancer progression.  I smoked a little while under going treatments before but don't handle it real well.  Makes me really anxious.  Too bad the same cant be said for cigarettes.  I used to smoke those with no problems.

    Curcurm, omega 3's for fish oils, ginger, mushrooms all have properties to slow cancer growth.  

    Where is the location of the new spots your doctor is worried about?

    My mom took me to a faith

    My mom took me to a faith healer last weekend and said I need to be on vitamon D 10,000 units a day immediately and also gave me this recipe that supposedly dries up cancer cells.    You take 4 dark purple egglplants, cut off greens, slice into 6 pcs each and add 2 gallons of water.  Brig to a rapid boil and boil for 2 hours.  Take off heat and let sit for 6 hours and strain.  When cool transfer to a jug.  Drink 3 oz in the am on an empty stomach and 3 oz befre bed every day.  The active enzyme solasodine glycoside in this is supposed to dry up your cancer cells.  Take this until you have no trace of cancer left in yur body.  Worth a try, you think?

    I'm not sure where they are....I kind of zoned out after he said I had 2 new spots.  I think he said one where some where around my bowel or someting and that is probably what has been causing my pain for the past few months but its just popping up now.

    Listen, if you every want to talk, cry or anything, you can ALWAYS call me day or night. 

    Lets beat thsis nasty thing!  I kow you arent up for those treatments again.....I most certainly dont blame you but hang in there.......your a =one tough cookie!!!!

     

    Kim

     

  • kimmiehedg
    kimmiehedg Member Posts: 27
    ccfighter said:

    My mom has been trying toget

    My mom has been trying toget me to an energy healer.  I'm game, it just hasn't paned out.  Do you watch through the worm hole with Morgan freeman on the science channel?  There was an episode where science proved that daily meditation and energy work can alter genes and can be used for self healing. Worth a try.

    Please edit your last post and remove your phone number.  This is a public forum and now anyone can see it.  Send me a PM with your number.  I'd love to talk.  I'll send you a PM in case you don't know how.  

    Id find out exactly where these new spots are and if they can be surgically removed.  With the abdominal tumor I had it was resting on part of my small bowel and where they were touching was removed also.  So, bowels can be resected.  If they asame all, the sooner the better to get them out.  Surgery sucks but it's our best chance.

    I love eggplant.  Certainly worth a try.

    Also, caffeine, melatonin and red wine.  Which makes me happy.  Wouldn't want to live without coffee and wine.

    Hang in there.

    i edited the 1st one but it

    i edited the 1st one but it posted 2x and editing or deleteng isnt an option for 2nd one.  oh well.

    my son watches that show..............i will have to ask him about it. 

    i'm going for a 2nd opinion wed.......not that i dont love my doctor but he suggested it.  saying i dont know everything thats out there.  i am also supposed to see a homeopathic dr mon if i can get out of here by then.  which i hope i do.........this is really taking a tll on my daughter.

    I tried the eggplant water and it wasnt bad.  I ove red wine too but havent even had the desire to drink any becuase I have felt so sick since Nov......not even 1 good day.  It getting old already!

    Keep me posted.........................

     

  • kimmiehedg
    kimmiehedg Member Posts: 27
    ccfighter said:

    My mom has been trying toget

    My mom has been trying toget me to an energy healer.  I'm game, it just hasn't paned out.  Do you watch through the worm hole with Morgan freeman on the science channel?  There was an episode where science proved that daily meditation and energy work can alter genes and can be used for self healing. Worth a try.

    Please edit your last post and remove your phone number.  This is a public forum and now anyone can see it.  Send me a PM with your number.  I'd love to talk.  I'll send you a PM in case you don't know how.  

    Id find out exactly where these new spots are and if they can be surgically removed.  With the abdominal tumor I had it was resting on part of my small bowel and where they were touching was removed also.  So, bowels can be resected.  If they asame all, the sooner the better to get them out.  Surgery sucks but it's our best chance.

    I love eggplant.  Certainly worth a try.

    Also, caffeine, melatonin and red wine.  Which makes me happy.  Wouldn't want to live without coffee and wine.

    Hang in there.

    i edited the 1st one but it

    i edited the 1st one but it posted 2x and editing or deleteng isnt an option for 2nd one.  oh well.

    my son watches that show..............i will have to ask him about it. 

    i'm going for a 2nd opinion wed.......not that i dont love my doctor but he suggested it.  saying i dont know everything thats out there.  i am also supposed to see a homeopathic dr mon if i can get out of here by then.  which i hope i do.........this is really taking a tll on my daughter.

    I tried the eggplant water and it wasnt bad.  I ove red wine too but havent even had the desire to drink any becuase I have felt so sick since Nov......not even 1 good day.  It getting old already!

    Keep me posted.........................

     

  • kimmiehedg
    kimmiehedg Member Posts: 27
    ccfighter said:

    My mom has been trying toget

    My mom has been trying toget me to an energy healer.  I'm game, it just hasn't paned out.  Do you watch through the worm hole with Morgan freeman on the science channel?  There was an episode where science proved that daily meditation and energy work can alter genes and can be used for self healing. Worth a try.

    Please edit your last post and remove your phone number.  This is a public forum and now anyone can see it.  Send me a PM with your number.  I'd love to talk.  I'll send you a PM in case you don't know how.  

    Id find out exactly where these new spots are and if they can be surgically removed.  With the abdominal tumor I had it was resting on part of my small bowel and where they were touching was removed also.  So, bowels can be resected.  If they asame all, the sooner the better to get them out.  Surgery sucks but it's our best chance.

    I love eggplant.  Certainly worth a try.

    Also, caffeine, melatonin and red wine.  Which makes me happy.  Wouldn't want to live without coffee and wine.

    Hang in there.

    i edited the 1st one but it

    i edited the 1st one but it posted 2x and editing or deleteng isnt an option for 2nd one.  oh well.

    my son watches that show..............i will have to ask him about it. 

    i'm going for a 2nd opinion wed.......not that i dont love my doctor but he suggested it.  saying i dont know everything thats out there.  i am also supposed to see a homeopathic dr mon if i can get out of here by then.  which i hope i do.........this is really taking a tll on my daughter.

    I tried the eggplant water and it wasnt bad.  I ove red wine too but havent even had the desire to drink any becuase I have felt so sick since Nov......not even 1 good day.  It getting old already!

    Keep me posted.........................

     

  • ccfighter
    ccfighter Member Posts: 476

    i edited the 1st one but it

    i edited the 1st one but it posted 2x and editing or deleteng isnt an option for 2nd one.  oh well.

    my son watches that show..............i will have to ask him about it. 

    i'm going for a 2nd opinion wed.......not that i dont love my doctor but he suggested it.  saying i dont know everything thats out there.  i am also supposed to see a homeopathic dr mon if i can get out of here by then.  which i hope i do.........this is really taking a tll on my daughter.

    I tried the eggplant water and it wasnt bad.  I ove red wine too but havent even had the desire to drink any becuase I have felt so sick since Nov......not even 1 good day.  It getting old already!

    Keep me posted.........................

     

    What kind of sick have you

    What kind of sick have you been feeling?

    Did the surgery ease any of your pain or symptoms?

    A second opinion is a good idea.  I think everyone should get a second opinion if for nothing else then for more information.  My oncologist recommend me getting a third opinion.

    Glad to know the eggplant water isn't terrible.  I'll have to give that a try.  Hang in there.  We will get through this together.

  • ccfighter
    ccfighter Member Posts: 476
    Going to start carbo/gemzar

    Going to start carbo/gemzar in February.  Hopefully kill all the rest of these wandering cells.  Will do a little radiation to the abdomen also.  Hopefully this will be the right combo to kick this cancer's butt out here.  Till then, I'm off to Disney world!  So excited!!

     

    Anyone done carbo/gemzar?  How is this combo?

  • kimmiehedg
    kimmiehedg Member Posts: 27
    HOORY FOR YOU!!!!!!!!!!!  I

    HOORY FOR YOU!!!!!!!!!!!  I am so excited for you and your family.  When are planning to ho to Disney?  I'veer never been but my sister said its fabulous!!!!  Hw many treatments of each?

  • ccfighter
    ccfighter Member Posts: 476

    HOORY FOR YOU!!!!!!!!!!!  I

    HOORY FOR YOU!!!!!!!!!!!  I am so excited for you and your family.  When are planning to ho to Disney?  I'veer never been but my sister said its fabulous!!!!  Hw many treatments of each?

    I will do six cycles of the

    I will do six cycles of the carbo/gamzar.  The cycles are a little different than the carbo/taxol in that the infusions are shorter (yeah!) and the cycle goes day 1 carbo and gemzar and day 8 and repeats every 21days.  the nurses tell me the first infusion of gemzar produces flu like symptoms with body aches and fever but that the rest of the infusions are a lot easier.  The biggest side effect of this combo seems to be blood count drops.  Not happy I will be needing the neupogen.

    We are planning to leave for Disney on feb. 1.  Can't wait!!

  • funbeadgirl
    funbeadgirl Member Posts: 181
    ccfighter said:

    I will do six cycles of the

    I will do six cycles of the carbo/gamzar.  The cycles are a little different than the carbo/taxol in that the infusions are shorter (yeah!) and the cycle goes day 1 carbo and gemzar and day 8 and repeats every 21days.  the nurses tell me the first infusion of gemzar produces flu like symptoms with body aches and fever but that the rest of the infusions are a lot easier.  The biggest side effect of this combo seems to be blood count drops.  Not happy I will be needing the neupogen.

    We are planning to leave for Disney on feb. 1.  Can't wait!!

    Enjoy Disney!

    CCfighter, I have been reviewing your posts and I find you to be very encouraging with all that you have gone through. I have idenified with so much of what you have said and I was very interested to hear about your pelvic recurrence. I am glad they could do a vertical incision with out doing a complete pelvic resection. I truly wish for you to get through your treatments and be able to gain strength and move on with living life. What I have come to realize is that none of us has any guarantees, that is why it is important to just live every day as the most precious day of our exsistence.

    For the past 4 months I have been dealing with a similar situation as yours, I have metastaic vulvar adenocarcinoma. I finishes carbo/taxol last March (2012) and in Oct. PET showed area of uptake in the anterior pubic bone. I was told it was inoperable, so I went to Mayo clinic for a second opinion, and they thought they could do a pelvic resection but needed my previous IMRT files to see where areas of radiation were to see if I was a candidate for the IORT, well I was not, too much radiation to same area before, so Mayo said no to the surgery.

    Two weeks ago I had cyroablation procedure to the pubic bone, much less invasive than the surgery, but it has knocked me on my butt! I am still recovering from a surgery to my right femur from last May, I had to have a rod inserted because I fractured my leg..probably due to the radiation and chemo I had after the leg surgery in Aug. 2011.

    My life has just been one doctor visit after another, constant CT. MRI, Pet, all that goes with a cancer diagnosis. My percentages are very bad also, 80% of the women with my cancer type usually die, and I have have 2 metastes within a year. I try not to focus on that, just on getting past my current health issues and trying to move on to doing what I want. Honestly it has been very hard to do that lately, I feel depressed and useless, I can't work, I can barely walk still, and I wait for the next scan, hoping it doesn't show any more mets.

    I went to Disney in November..it was planned last January as a victory trip after I finished all my treatments, but I received the news of the new tumor just before I left, so the trip was ever so more important to me, I knew it might be a while before I get back to the Magic Kingdom. We usually go every year, but haven't in last 4 years since my first diagnosis, but I plan on going again!

    I guess this forum has been so helpful to me because I can read what other ladies are going through and see how others are able to deal with their own situation, and it gives me strength to continue. Thank you for sharing your experience here, I hope the best for you.

  • ccfighter
    ccfighter Member Posts: 476

    Enjoy Disney!

    CCfighter, I have been reviewing your posts and I find you to be very encouraging with all that you have gone through. I have idenified with so much of what you have said and I was very interested to hear about your pelvic recurrence. I am glad they could do a vertical incision with out doing a complete pelvic resection. I truly wish for you to get through your treatments and be able to gain strength and move on with living life. What I have come to realize is that none of us has any guarantees, that is why it is important to just live every day as the most precious day of our exsistence.

    For the past 4 months I have been dealing with a similar situation as yours, I have metastaic vulvar adenocarcinoma. I finishes carbo/taxol last March (2012) and in Oct. PET showed area of uptake in the anterior pubic bone. I was told it was inoperable, so I went to Mayo clinic for a second opinion, and they thought they could do a pelvic resection but needed my previous IMRT files to see where areas of radiation were to see if I was a candidate for the IORT, well I was not, too much radiation to same area before, so Mayo said no to the surgery.

    Two weeks ago I had cyroablation procedure to the pubic bone, much less invasive than the surgery, but it has knocked me on my butt! I am still recovering from a surgery to my right femur from last May, I had to have a rod inserted because I fractured my leg..probably due to the radiation and chemo I had after the leg surgery in Aug. 2011.

    My life has just been one doctor visit after another, constant CT. MRI, Pet, all that goes with a cancer diagnosis. My percentages are very bad also, 80% of the women with my cancer type usually die, and I have have 2 metastes within a year. I try not to focus on that, just on getting past my current health issues and trying to move on to doing what I want. Honestly it has been very hard to do that lately, I feel depressed and useless, I can't work, I can barely walk still, and I wait for the next scan, hoping it doesn't show any more mets.

    I went to Disney in November..it was planned last January as a victory trip after I finished all my treatments, but I received the news of the new tumor just before I left, so the trip was ever so more important to me, I knew it might be a while before I get back to the Magic Kingdom. We usually go every year, but haven't in last 4 years since my first diagnosis, but I plan on going again!

    I guess this forum has been so helpful to me because I can read what other ladies are going through and see how others are able to deal with their own situation, and it gives me strength to continue. Thank you for sharing your experience here, I hope the best for you.

    Funbeadgirl,
    I have been

    Funbeadgirl,

    I have been following you as well.  I hope that the ablation to your pelvic bone was successful.  How was that treatment?  What is involved and how is the recovery?

    My recent surgery to the pelvic met was on wall anterior abdominal wall in the pelvis.  It was pretty straight forward because it was superficial.  The problem was that the tumor had adhered to my small intestine, so they had to remove part of the small intestine along with the tumor on the abdominal wall.  I have googled my brain out about mets to the abdominal wall from cervical cancer and it appears that it is very rare.  I can find little information about it.  It is very frustrating.  And though cervical cancer is not so rare, most are squamous.  20% are adenocarcinoma and I have a mixed adenosquamous and comprise about 5% of cervical cancers.  There is not much known about my cancer, and that too is frustrating.  I had a lung resection done at the same time as my abdominal surgery and that one hurt!  now I will go back on chemo even though it appears to be rather useless for cervical cancer.  Still hoping.

    I know how hard it is to stay positive when things keep going wrong and you feel like crap.  This website has been so helpful to me too.  It is less scary when you can share other people's experience going through the samethings.  I hope that you feel better soon,and that the ablation got the last of those cancer cells.  Hugs.

  • funbeadgirl
    funbeadgirl Member Posts: 181
    ccfighter said:

    Funbeadgirl,
    I have been

    Funbeadgirl,

    I have been following you as well.  I hope that the ablation to your pelvic bone was successful.  How was that treatment?  What is involved and how is the recovery?

    My recent surgery to the pelvic met was on wall anterior abdominal wall in the pelvis.  It was pretty straight forward because it was superficial.  The problem was that the tumor had adhered to my small intestine, so they had to remove part of the small intestine along with the tumor on the abdominal wall.  I have googled my brain out about mets to the abdominal wall from cervical cancer and it appears that it is very rare.  I can find little information about it.  It is very frustrating.  And though cervical cancer is not so rare, most are squamous.  20% are adenocarcinoma and I have a mixed adenosquamous and comprise about 5% of cervical cancers.  There is not much known about my cancer, and that too is frustrating.  I had a lung resection done at the same time as my abdominal surgery and that one hurt!  now I will go back on chemo even though it appears to be rather useless for cervical cancer.  Still hoping.

    I know how hard it is to stay positive when things keep going wrong and you feel like crap.  This website has been so helpful to me too.  It is less scary when you can share other people's experience going through the samethings.  I hope that you feel better soon,and that the ablation got the last of those cancer cells.  Hugs.

    Thank you so much for your

    Thank you so much for your words of encouragement! Sounds like it was quite a surgery you just had, and I hope you heal well for your trip to Disney.

    The ablation was not too bad, I did request to be put under general anesthesia though, it was a 2 hour procedure. My tumor was in the front of the pubic bone, it engulfed the entire left pubic bone. A pelvic surgery would require basically cutting me open across my abdomen, down the groin and across top of lef leg in order to expose all abdominal muscles so they could be detached from the pubic bone, Then they wanted to remove the pubic bone and re attached the muscles to other muscles...a very big surgery and not guaranteed a good outcome, certainly not a 'cure' for my cancer. As I stated I still am dealing with healing issues in my right leg from surgery last May.

    With the ablation, they insert 6 probes through the skin, like a needle (so no incisions) into the pubic bone. This is done using a CT machine for guidance, then they use liquid nitrogen to slowly freeze the tumor, thereby killing the cells. Pretty straight forward and not invasive, but I was bruised and swollen in the groin and abdonimal area, both sides for a week. Tuesday it will be 2 weeks since I had it done, and it is still tender in the pubic area, but I expect in a couple weeks that will be gone. I feel pretty good but I am very fatigued and honestly a little depressed, but I know it will get better. I still go for physical therapy for my right leg, 2 times a week, so that takes a lot out of me too and I am not progressing like I should. The problem is that the femur has not healed and made new bone, doc thinks it is because of the radiation and chemo I had, and the fact that a new tumor was growing all at the same time.

    I totally understand what you say about trying to Goggle anything regarding your cancer, it is frustrating. My vulvar adeno is also a very rare cancer, and none of my docs had ever seen it or heard of it metastasizing to a bone, much less 2 different areas. I no longer hope for a cure, I consider it a disease like diabetes, it is incurable but treatable, Probably the hardest thing for me is the waiting in between the scans..you always hold your breathe, hoping they will find nothing.

    My evergy level and interest in doing things is very low right now, I really have to find a way to get out of this funk I am in, it is counterproductive to getting well and I know it serves me better to be active, even if it is limited. This week I will go back to work one day, and do some volunteer work, I am sure that will help.

    Have a great time on your trip, I am so jealous, I love Disney so much and we had such a wonderful time in November. If you are a ride enthusist..ride Test Track for me, it was closed when we were there.

    Be strong and of good courage!

     

     

  • ccfighter
    ccfighter Member Posts: 476

    Thank you so much for your

    Thank you so much for your words of encouragement! Sounds like it was quite a surgery you just had, and I hope you heal well for your trip to Disney.

    The ablation was not too bad, I did request to be put under general anesthesia though, it was a 2 hour procedure. My tumor was in the front of the pubic bone, it engulfed the entire left pubic bone. A pelvic surgery would require basically cutting me open across my abdomen, down the groin and across top of lef leg in order to expose all abdominal muscles so they could be detached from the pubic bone, Then they wanted to remove the pubic bone and re attached the muscles to other muscles...a very big surgery and not guaranteed a good outcome, certainly not a 'cure' for my cancer. As I stated I still am dealing with healing issues in my right leg from surgery last May.

    With the ablation, they insert 6 probes through the skin, like a needle (so no incisions) into the pubic bone. This is done using a CT machine for guidance, then they use liquid nitrogen to slowly freeze the tumor, thereby killing the cells. Pretty straight forward and not invasive, but I was bruised and swollen in the groin and abdonimal area, both sides for a week. Tuesday it will be 2 weeks since I had it done, and it is still tender in the pubic area, but I expect in a couple weeks that will be gone. I feel pretty good but I am very fatigued and honestly a little depressed, but I know it will get better. I still go for physical therapy for my right leg, 2 times a week, so that takes a lot out of me too and I am not progressing like I should. The problem is that the femur has not healed and made new bone, doc thinks it is because of the radiation and chemo I had, and the fact that a new tumor was growing all at the same time.

    I totally understand what you say about trying to Goggle anything regarding your cancer, it is frustrating. My vulvar adeno is also a very rare cancer, and none of my docs had ever seen it or heard of it metastasizing to a bone, much less 2 different areas. I no longer hope for a cure, I consider it a disease like diabetes, it is incurable but treatable, Probably the hardest thing for me is the waiting in between the scans..you always hold your breathe, hoping they will find nothing.

    My evergy level and interest in doing things is very low right now, I really have to find a way to get out of this funk I am in, it is counterproductive to getting well and I know it serves me better to be active, even if it is limited. This week I will go back to work one day, and do some volunteer work, I am sure that will help.

    Have a great time on your trip, I am so jealous, I love Disney so much and we had such a wonderful time in November. If you are a ride enthusist..ride Test Track for me, it was closed when we were there.

    Be strong and of good courage!

     

     

    I have a friend who is a

    I have a friend who is a stage 4 prostate cancer.  His mets are almost all to his bones, spine, legs, ect.  He has had radiation to the spine and to the leg.  he now walks with a cane but his pain level has been greatly reduced by the radiation.  I would say that probably the issues you have with your leg are a result of the surgery combined with the radiation.  I know that since I had radiation to the pelvis, my pet/ct's refrence reduced bone marrow activity in the pubic bones as a result of the radiation.  Now that I am going on chemo again my oncologist has told me that I will pretty much need neupogen straight out of the gate because I already have compromised bone marrow production.  Since your cancer has mets to bones and the treatment has been targeted at them, your fatigue is probably caused by the slow bone marrow in giving you back all the red and white cells.  Result is fatigue.

    The ablation sounds intersting and alot easier than surgery.  I hope that you are back to 100% soon.  My cancer is so sneaky that I dont even have pain or symptoms of the tumor, only symptoms of cancer in general.  I get fatigue really bad, with achey eyes.  I also cant seem to gain weight.  My appetite is not great but even when I feel like I am eating more, my weight wont change.  It scares me.  Though I count my lucky stars that I have not had pain yet. 

    Have you looked into any immune therapy?  Like dentric cell vaccines?  I know that your cancer is rare and that there are few clinical trials aimed at "vulva" cancer, but some for solid tumors.  Germany seems to be leading the way on this type of treatment.  I am interested in it even though my oncologist says that it is not worth it.  Every one is different.  Though it may not work for the majority, I know that it works for some.  How do I know which one I am unless I try.  The only problem is that I can not find a safe place in which to make an attempt.  I dont know who to trust.  I hear there is a doctor in NY who does a lot with the immune therapy and combining natural healing herbs with modern medicine.  I have forgotten his name.

    I am so excited about disney.  I have been several times when I was a kid.  My uncle lived in Orlando and my grandmother in Crystal River and we would vist every year.  The last time I went I was about 16.  My kids have never been though.  They are 5,7, and 9 and the perfect age for the magical experience.  I am sure my favorite part of this trip will be watching their faces light up, all their excitement.  Its precious.  We have decided not to tell them and suprise them at the last minute.  We are going to put them in the car Friday morning to take them to school but just keep driving.  I cant wait to hear them scream when they finally realize they arent going to school and we tell them what we are really doing,  AHHHHH! (Happy scream!)

    love, hugs and positive vibes,

    Jenny