Discouraged.....

Hi everybody.  I saw my Oncologist on Friday and we officially decided to discontinue Doxil.  After three cycles, and a dose reduction, the side effects were worse than they had ever seen.  She wants me to take several weeks and just heal, which is OK with me.  I am UPSC Stage IVb.  In 2014 I went thru major debulking surgery, chemo (carboplatin/paclitaxel), and radiation (vaginal brachytherapy.  I reached NED in July, but the cancer recurred in my pelvic lymph nodes before my hair even grew back.  Started Doxil in Jan. but it literally brought me to my knees.  Now we are waiting to hear from my onc/surgeon to see if surgery to remove the nodes is a possibility.  I have been encouraged by the fact that the spread has been limited to the nodes so far, no tumors or organ involvement and I am hoping surgery is an option (tho I am nervous about the side effects).  I am starting to be concerned that I am chemo resistant, and am looking into working with a naturopathic doctor to add in supplements that will at least help me keep my own immune system strong.  I worry about dying from the side effects of the treatment as much as the cancer.  Sometimes I wonder if my quality of life for whatever time I have left might be better if I just stepped away and just focused on staying healthy...working with a naturopath....some kind of alternative treatment?  I haven't had much trouble with the cancer...but the drugs may very well take me down.  Hoping I hear from my surgeon today or tomorrow.  Anyone had any experience with a lymphadenectomy as a recurrence treatment? - Helen

Comments

  • ConnieSW
    ConnieSW Member Posts: 1,656 Member
    I'm so sorry

    I haven't been where you are so don't have anything from practical experience to offer, which is the best thing about this site.  If/ when I recur, I'm going to need the ladies in the know big time.  I'll be waiting with you to see what they have to say.  

    Are your nasty side effects continuing to recede?

  • daylady
    daylady Member Posts: 122
    ConnieSW said:

    I'm so sorry

    I haven't been where you are so don't have anything from practical experience to offer, which is the best thing about this site.  If/ when I recur, I'm going to need the ladies in the know big time.  I'll be waiting with you to see what they have to say.  

    Are your nasty side effects continuing to recede?

    Yes, they put me on a regimen

    Yes, they put me on a regimen of steroids that would take down an elephant and they kicked in right away.  The only major side effect left is that I am losing the first couple layers of skin on both my hands and feet.  I look a bit like a lizard but oh well....  Yesterday I was able to go for a 2-3 mile walk for the first time in a month and that felt soooooo good.  - H

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    Sorry you had such a rough

    Sorry you had such a rough time with these chemo treatment. Sometime it is the best to sit back and re-evaluate the situation and come up with new options or game plan. The ladies are here to support and give advice, those that have been there. I just had the 6 rounds of chemo carbo,taxol and no recurrance as of yet, and had stage 3 c1 for carcinoma sarcoma (MMMT) uterine cancer 3.5 years ago. I had no radation either.  Have you considered a second opinion?  For now rest and recover from this latest round and stay positive.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,299 Member
    Daylady, such huge things to

    Daylady, such huge things to consider.  I sometimes think if we knew how it would be in five months we would make our decisions based on that, but it doesn't work that way does it? 

    I would have a talk with the doctor.  Tell them your thoughts and concerns, ask them what are the options, and most importantly, never give up.  This is so hard and know you are in many people's thoughts and prayers.

  • Ro10
    Ro10 Member Posts: 1,561 Member
    Helen

    So sorry to hear you can no longer take Doxil.  I have been afraid of Doxil because of what others have said of the side effects.  Your side effects were worse than others have had.  What about other chemos?  Some have taken Gemzar and others have taken Avastin.  I don't know if these are possibilities for you.  

    I have had taxol/ carboplatin and taxol/ cisplatin initially and for 2 recurrences.  My recurrences have always been in the lymph nodes, but multiple lymph nodes.   This last recurrence only one lymph node was enlarged.  I had 10 stereotactic body radiation  treatments ( like cyber knife) to that lymph node.  The doctor felt the radiation would be easier on the body than taking chemo again.  I don't know if this would be an option for you.  

    I have also been on Aromasin for several years.  It is an Aromatase inhibitor which slows Cancer growth for some.   It had been since 5/2012 that I had my last chemo.  So it has slowed my growth.  I tried Arimidex prior to my second recurrence, but it did not work for me.   Femara is another drug in this class.  

    Enjoy your chemo break and I hope they come up with a new plan that is agreeable for you.  Quality of life is definitely something to consider.  I feel I have had agood quality of life even though I have had three recurrences since 1/09.  In peace and caring.

  • AWK
    AWK Member Posts: 364 Member
    Ro10 said:

    Helen

    So sorry to hear you can no longer take Doxil.  I have been afraid of Doxil because of what others have said of the side effects.  Your side effects were worse than others have had.  What about other chemos?  Some have taken Gemzar and others have taken Avastin.  I don't know if these are possibilities for you.  

    I have had taxol/ carboplatin and taxol/ cisplatin initially and for 2 recurrences.  My recurrences have always been in the lymph nodes, but multiple lymph nodes.   This last recurrence only one lymph node was enlarged.  I had 10 stereotactic body radiation  treatments ( like cyber knife) to that lymph node.  The doctor felt the radiation would be easier on the body than taking chemo again.  I don't know if this would be an option for you.  

    I have also been on Aromasin for several years.  It is an Aromatase inhibitor which slows Cancer growth for some.   It had been since 5/2012 that I had my last chemo.  So it has slowed my growth.  I tried Arimidex prior to my second recurrence, but it did not work for me.   Femara is another drug in this class.  

    Enjoy your chemo break and I hope they come up with a new plan that is agreeable for you.  Quality of life is definitely something to consider.  I feel I have had agood quality of life even though I have had three recurrences since 1/09.  In peace and caring.

    You ladies are the best

    Ro, you have a way of posting on the days I need to see it the most.  Today was one of those days and in seeing Helen's post it reminded me I am not alone.  Helen - keeping you in my prayers.  Anne

  • AWK
    AWK Member Posts: 364 Member
    I wondered how things went; keeping you in my prayers.

    There are other options out there.  I agree; take a step back, a deep breath and try to remain open to all paths.  I am reminding myself of the same thing.  We can do this together.  Just keep sharing ideas and informations.  Hugs and prayers.- Anne

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    Ro10 said:

    Helen

    So sorry to hear you can no longer take Doxil.  I have been afraid of Doxil because of what others have said of the side effects.  Your side effects were worse than others have had.  What about other chemos?  Some have taken Gemzar and others have taken Avastin.  I don't know if these are possibilities for you.  

    I have had taxol/ carboplatin and taxol/ cisplatin initially and for 2 recurrences.  My recurrences have always been in the lymph nodes, but multiple lymph nodes.   This last recurrence only one lymph node was enlarged.  I had 10 stereotactic body radiation  treatments ( like cyber knife) to that lymph node.  The doctor felt the radiation would be easier on the body than taking chemo again.  I don't know if this would be an option for you.  

    I have also been on Aromasin for several years.  It is an Aromatase inhibitor which slows Cancer growth for some.   It had been since 5/2012 that I had my last chemo.  So it has slowed my growth.  I tried Arimidex prior to my second recurrence, but it did not work for me.   Femara is another drug in this class.  

    Enjoy your chemo break and I hope they come up with a new plan that is agreeable for you.  Quality of life is definitely something to consider.  I feel I have had agood quality of life even though I have had three recurrences since 1/09.  In peace and caring.

    Ro, how are you doing on

    Ro, how are you doing on Diovan HCT (Valsartan Hct)?  Is you cough any better? Trish

  • Ro10
    Ro10 Member Posts: 1,561 Member

    Ro, how are you doing on

    Ro, how are you doing on Diovan HCT (Valsartan Hct)?  Is you cough any better? Trish

    Trisha

    I had to switch from the Diovan.  My medicare D would not cover it.  So after these 30 days I will switch to cozaar - generic is  Losartin.  The Diovan is controllong the BP.  They are both in the same drug classification, so it should work the same.  The cough is still present Especially at night.  I take my codeine cough syrup and Tessalon cough pill  before bedtime and am awakened several hours later with the cough.  I would sure love a full night's sleep.

    We are back in Illinois now.  We had 70 degree temperatures, so I worked in my gardens the last two days.  What great therapy for me.  Some of the daffodils are blooming.  Other plants are peeking through the soil.  What a wonderful time.  i have a lot of spring blooming plants, so I will get to enjoy them.

    I have my CAT scan done April 8.  It will be 6 months since I finished my SBRT to the paratracheal lymph node.   I am down to 10 mg of prednisone every day.  The bronchoscopy did not show anything abnormal.  The lung doctor in Florida recommended I see a lung doctor in Illinois for his recommendation on how to taper the prednisone.

    It will be interesting to see what the abdominal lymph node has done on the CAT scan and what the CA-125 has done.  I hope the radiation pneumonitis is improved.  I don't see the doctor until the 15th.

    Hope you are all doing well.  In peace and caring.

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    I went to my gyn onc on 17

    I went to my gyn onc on 17 Mar CA 125 was elevated to 16 up from 13. I did not think anything about it because still way below 35. Dr.Lea asked if I had ever had an abnormal pap and I said no so she is stopping them. The 18th woke up with a crick in my neck which by Saturday was hurting really bad went to Care Now clinic they gave me muscle.relaxers and told me to continue with the heating pads. Sunday woke up with blisters on my neck, back shoulder and chest. I finally got into my PCP and lucky me it is not burns but shingles. Glad it is not burns but shingles hurt.  Sent message to my gyn onc and she said that is probably why my CA was elevated, because it affects the immune system. I go back May 1 for another blood test. I have missed 2 weeks of work so far. Just trying to get cleared up enough to go to the hospital on Friday because my daughter has to have gallbladder surgery. She is freaking out some as she has never been put under.  But life is good here. We have already had our spring flowers bloom except for our Texas flower the bluebonnet and that is just now coming up on the highways Glad to hear you can get outside in your garden. Hopefully the new lung dr will find something for your cough. Take care trish.

     

     

  • Ro10
    Ro10 Member Posts: 1,561 Member

    I went to my gyn onc on 17

    I went to my gyn onc on 17 Mar CA 125 was elevated to 16 up from 13. I did not think anything about it because still way below 35. Dr.Lea asked if I had ever had an abnormal pap and I said no so she is stopping them. The 18th woke up with a crick in my neck which by Saturday was hurting really bad went to Care Now clinic they gave me muscle.relaxers and told me to continue with the heating pads. Sunday woke up with blisters on my neck, back shoulder and chest. I finally got into my PCP and lucky me it is not burns but shingles. Glad it is not burns but shingles hurt.  Sent message to my gyn onc and she said that is probably why my CA was elevated, because it affects the immune system. I go back May 1 for another blood test. I have missed 2 weeks of work so far. Just trying to get cleared up enough to go to the hospital on Friday because my daughter has to have gallbladder surgery. She is freaking out some as she has never been put under.  But life is good here. We have already had our spring flowers bloom except for our Texas flower the bluebonnet and that is just now coming up on the highways Glad to hear you can get outside in your garden. Hopefully the new lung dr will find something for your cough. Take care trish.

     

     

    Trish

    So sorry to hear about the shingles.  They are not fun.  I hope you got the medicine for shingles in time to halt their progress.  I had them several years ago,but luckily had a dermatologist appointment and told her I thought I had the start of shingles around my waist band.  I got the medicine started right away and they did not get as bad as others have said.

    I hope your daughters gallbladder surgery goes well With no complications.  It Is scary when you have never had surgery before.

    i don't know what the Bluebonnets look like.  I will have to look them up.  My Bluebells are popping up.  

    Hope your neck is better and the shingles clear up for you.  In peace and caring.

  • daylady
    daylady Member Posts: 122
    Ro10 said:

    Trish

    So sorry to hear about the shingles.  They are not fun.  I hope you got the medicine for shingles in time to halt their progress.  I had them several years ago,but luckily had a dermatologist appointment and told her I thought I had the start of shingles around my waist band.  I got the medicine started right away and they did not get as bad as others have said.

    I hope your daughters gallbladder surgery goes well With no complications.  It Is scary when you have never had surgery before.

    i don't know what the Bluebonnets look like.  I will have to look them up.  My Bluebells are popping up.  

    Hope your neck is better and the shingles clear up for you.  In peace and caring.

    Than you everyone!

    I so appreciate everyone's comments/concern and hold you all is positive thought and prayers as well.  I have still not heard from my surgeon, but got an e-mail from her that she had been away and would contact me soon with her thoughts.  I'm thinking today or tomorrow.  I did locate a Naturopathic Oncologist in private practice in SF who has inccrediblecredentials and have an appt. to meet with her on the 18th.  My oncologist has already said she would work with a naturopath if I brought one on board, so I feel this is a good addition to my team.  I feel better everyday and have been able to get out and walk again the last couple of days which makes such a difference for me.  I was walking 5 miles a day before the Doxil took me down.  I will let everyone know what the new treatment plan turns out to be.  The Naturopath asked if anyone had suggested radiation (not yet).  I do worry about long term effects from radiation.  If I end up going back on Chemo, my oncologist and I are looking at Avistan.  She feels it is fairly well tolerated.  In the meantime I am headed to So. California tomorrow to spend Easter with my kids and grandkids and we have a new baby coming any minute which makes it all the more special.  I am wishing a Happy Easter to everyone.  And Ro...thank you so much for your input.  Your situation sounds the closest to mine and it is so helpful to know someone else is navigating this path successfully.  Love you all.  - Helen 

  • AWK
    AWK Member Posts: 364 Member
    daylady said:

    Than you everyone!

    I so appreciate everyone's comments/concern and hold you all is positive thought and prayers as well.  I have still not heard from my surgeon, but got an e-mail from her that she had been away and would contact me soon with her thoughts.  I'm thinking today or tomorrow.  I did locate a Naturopathic Oncologist in private practice in SF who has inccrediblecredentials and have an appt. to meet with her on the 18th.  My oncologist has already said she would work with a naturopath if I brought one on board, so I feel this is a good addition to my team.  I feel better everyday and have been able to get out and walk again the last couple of days which makes such a difference for me.  I was walking 5 miles a day before the Doxil took me down.  I will let everyone know what the new treatment plan turns out to be.  The Naturopath asked if anyone had suggested radiation (not yet).  I do worry about long term effects from radiation.  If I end up going back on Chemo, my oncologist and I are looking at Avistan.  She feels it is fairly well tolerated.  In the meantime I am headed to So. California tomorrow to spend Easter with my kids and grandkids and we have a new baby coming any minute which makes it all the more special.  I am wishing a Happy Easter to everyone.  And Ro...thank you so much for your input.  Your situation sounds the closest to mine and it is so helpful to know someone else is navigating this path successfully.  Love you all.  - Helen 

    It's been a rough week all around.

    We met with my doctors on Tuesday and scans revealed two of my tumors have almost doubled in size, the one by my heart has grown and the other two are stable. The tumor board has recommended I meet with a clinical researcher at USC Norris to talk about any other options for treatment.  This doctor is a principal investigator for the NIH/NCI and is going to look across all clinical trials for solutions; including clinical trials that match up best with my genome test results.  He has been part of the team all along but is going to take the lead at least temporarily.

    All of this is bringing out my inner science geek and is fascinating.  I feel well and went horseback riding after the meeting and my treatment.  My husband is doing pretty well too.  We have gotten very good at flowing with things and doing tons of research.  I decided to take tomorrow off and spend time cooking with my BFF for her annual Seder.  Then we will enjoy Easter with friends.  Time to focus on gratitude and the grace of the journey.

    Stay Strong and keep Thriving ladies!   

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

    It's been a rough week all around.

    We met with my doctors on Tuesday and scans revealed two of my tumors have almost doubled in size, the one by my heart has grown and the other two are stable. The tumor board has recommended I meet with a clinical researcher at USC Norris to talk about any other options for treatment.  This doctor is a principal investigator for the NIH/NCI and is going to look across all clinical trials for solutions; including clinical trials that match up best with my genome test results.  He has been part of the team all along but is going to take the lead at least temporarily.

    All of this is bringing out my inner science geek and is fascinating.  I feel well and went horseback riding after the meeting and my treatment.  My husband is doing pretty well too.  We have gotten very good at flowing with things and doing tons of research.  I decided to take tomorrow off and spend time cooking with my BFF for her annual Seder.  Then we will enjoy Easter with friends.  Time to focus on gratitude and the grace of the journey.

    Stay Strong and keep Thriving ladies!   

    Anne

    i an so sorry to hear your tumors have grown.  I hope they can give you some options for further treatment.   It sounds like you have a great team working for you.  It is good you and your husband can go with the flow.  Enjoy your time with you BFF and have a happy Easter with your friends.  Your horseback riding is good therapy for you like gardening is for me.  You too need to stay strong and keep thriving.  In peace and caring.  

  • Caradavin
    Caradavin Member Posts: 46 Member
    Nothing I can say or do, but

    Nothing I can say or do, but I want to extend warmth and hugs. (((HUGS)))