Is it "GIVING UP"?

pandagypsy

I was just wondering what some of the other ovarian cancer survivors think about this topic: Is it GIVING UP if you decide NOT to keep on yet another round of chemo for a reoccurance? I was diagnosed stage IV in February 2009. An annual scan in May 2015 showed a reoccurance of the ovarian cancer in my abdomen, resulting in 5 months of chemo, taxol & carboplatin. A re-scan right before the last 2 treatments showed remission.  This last chemo has left me wth horrible neuropathy, a severe reaction to a drug to treat it, and a neurologist who says the test results don't support the degree of neuropathy I am experiencing (?). And now the oncologist wants to do yet another scan.  I have decided that my quality of life SUCKS, so I will NOT be agreeing to any more chemo.....so why keep scanning? Is it wrong to not want to feel miserable for the time I have left?

NoTimeForCancer

Pandagypsy, I am a visitor

Pandagypsy, I am a visitor from the Uterine board, so I hope you don't mind, but I don't think your question indicates "giving up".  It is courageous to face your future and no one has any idea what you are going through.  I think you will know the "when' to quit treatment and enjoy your time.  I pray for your peace.

lovesanimals

NoTimeForCancer said:

Pandagypsy, I am a visitor

Pandagypsy, I am a visitor from the Uterine board, so I hope you don't mind, but I don't think your question indicates "giving up".  It is courageous to face your future and no one has any idea what you are going through.  I think you will know the "when' to quit treatment and enjoy your time.  I pray for your peace.

Dear Pandagypsy

I wholeheartedly agree with "NoTimeForCancer".  You have every right to decide if or when you've had enough of the severely debilitating side effects of chemo.  I've not been in your shoes but I don't think I would want my life prolonged if the quality of my life is horribly miserable and painful.  Sending lots of prayers your way that you find comfort and peace in whatever decision(s) you make.

Hugs,

Kelly

Alexandra

Dear Pandagypsy

I don't believe that stopping chemo is giving up. No one knows your body better than you and it's a deeply personal choice.

Just please hear me out. Peripheral neuropathy is a known side effect of Taxol, not of all chemo.

There are other types of chemo out there that may have less debilitating side effects: Doxil, Avastin, Gemzar, Topotecan, Irinotecan. If you're still platinum-sensitive: Carboplatin, Oxiplatin or a combination of several drugs.

There are clinical trials you might qualify for. I have been on an oral drug trial for 9 months with no side effects at all.

Do you want to talk to your ONC (or to get a second opinion) about ALL your options before making an irreversible decision?

Is it Gabapantin for neuropathy that is causing severe reaction? Maybe switching to Lyrica will be better for you?

pandagypsy

Thank you for the feedback

I am very happy to read some feedback on my thoughts of continuing treatments for cancer.  I first experienced chemo with breast cancer when I was 28.....a reoccurance led to the unanimous decision (me & my husband!) for a bilateral mastectomy, just to "get rid of it all....and not have it be an issue over and over again".  I will be 60 this year, so my stage IV ovarian cancer at 55 was quit a shock............I was not aware of the connection between breast and ovarian cancer.......part of me says "shame on me" for not knowing...........but more than that, "shame on my doctors" who took my health histories and could only congratulate me on being a survivor. The 5 years following breast cancer treatment were annual liver and bone scans...I thought that was the only concern.

My main reason right now to avoid future treatments is financially motivated...sad, but true. Just a year previous to my stage IV ovarian cancer reocurrance, we (actually, it was my idea) decided to sell our house and just about everything else we owned, and get a motorhome and travel full time, since I was on disability and hubby took early retirement. Yes, the drug mentioned (gaba......?) was responsible for the severe reactions I experienced; Lyrica was suggested, but it costs $35 per month......since I have 5 "payment plans" for the doctors, hospitals, and treatments, my SS budget is getting stretched to its limit. After 41 years together I just think that me & my husband deserve some "good times" together, and I can't afford retirement AND constant medical treatment. Hubby has been great helping me get thru my medical issues (oh, by the way, I had brain surgery for a cyst 10 years ago; heart disease, arteries that are too risky to stent, extremely high blood pressure, which is finally under control thanks to various drugs).....which probably is influencing me in saying ENOUGH IS ENOUGH.  Health or Happiness?   

pandagypsy

NoTimeForCancer said:

Pandagypsy, I am a visitor

Pandagypsy, I am a visitor from the Uterine board, so I hope you don't mind, but I don't think your question indicates "giving up".  It is courageous to face your future and no one has any idea what you are going through.  I think you will know the "when' to quit treatment and enjoy your time.  I pray for your peace.

Love "NO TIME FOR CANCER"

That says it all............that is what I told the doctors when they told me I had a reoccurance.  They told me I would have plenty of time AFTER treatment to begin my new "gypsy" lifestyle of roaming in a motorhome.  Now, I am paying off 3 hospitals and 2 doctors..........with both my husband & myself retired on SS, we are TOO RICH for any extra help from any foundations or governemnt programs. I have a Medicare advantage plan, but almost EVERYTHING comes with a copayment......only most generic drugs, lab work, and visits with my primary dr. My husband's insuance is $350 month, ALMOST old enough for medicare, not yet. The doctors want me to keep doing scans @ $200 , but I want to enjoy some time NOT parked forever in our new "home" (a motorhome). Almost 3 months since my last chemo, I still don't feel well enough to travel. I will rest up in our 35' "sardine can", visit my kids in the summer, then, just maybe, will return for another follow up scan.....at this time, I am ready to "control the symptoms", since the dr. told me I am NOT CURABLE. 

pandagypsy

Alexandra said:

Dear Pandagypsy

I don't believe that stopping chemo is giving up. No one knows your body better than you and it's a deeply personal choice.

Just please hear me out. Peripheral neuropathy is a known side effect of Taxol, not of all chemo.

There are other types of chemo out there that may have less debilitating side effects: Doxil, Avastin, Gemzar, Topotecan, Irinotecan. If you're still platinum-sensitive: Carboplatin, Oxiplatin or a combination of several drugs.

There are clinical trials you might qualify for. I have been on an oral drug trial for 9 months with no side effects at all.

Do you want to talk to your ONC (or to get a second opinion) about ALL your options before making an irreversible decision?

Is it Gabapantin for neuropathy that is causing severe reaction? Maybe switching to Lyrica will be better for you?

I'm hearing you out Alexandra!

I've always said NEVER SAY NEVER! I am just tired of being marched on over to the "financial counselor" after visits with the dr. My dr, is with FLORIDA CANCER SPECIALIASTS and that is probably a lot of the problem. In the past, we have traveled for my treatment (I will be 60; when I had breast cancer @ 28, we were driving 2 1/2 hours each way to  a university medical center; when I had a colloid cyst in my brain 10 years ago, the hospital was an hour 1/2 from home. I agree with my husband on the added stress factor of adding the distance to an already horrible problem; I would love to talk to another ONC who is with a non-profit cancer center but they are 1 1/2 hours away. I would also like to go to the university I was recently sent to by my cardiologist, but that is 3 hours, each way.....we had to board 2 dogs when I went there for a consultation. Yes, I put a lot of thought into this.

Yes, it was Gabapantin that gave me the severe reaction. Lyrica will cost too much under my insurance plan. I'm hoping the neuropathy will get better; my legs and feet are better, the hands are a big issue. Currently, due to costs, the dr. is controlling the hand pain by keeping me on regular doses of pain pills.  Yes, insurance will give me that stuff at no cost to me.............unbelievable.......................

 

Morkies

pandagypsy said:

Thank you for the feedback

I am very happy to read some feedback on my thoughts of continuing treatments for cancer.  I first experienced chemo with breast cancer when I was 28.....a reoccurance led to the unanimous decision (me & my husband!) for a bilateral mastectomy, just to "get rid of it all....and not have it be an issue over and over again".  I will be 60 this year, so my stage IV ovarian cancer at 55 was quit a shock............I was not aware of the connection between breast and ovarian cancer.......part of me says "shame on me" for not knowing...........but more than that, "shame on my doctors" who took my health histories and could only congratulate me on being a survivor. The 5 years following breast cancer treatment were annual liver and bone scans...I thought that was the only concern.

My main reason right now to avoid future treatments is financially motivated...sad, but true. Just a year previous to my stage IV ovarian cancer reocurrance, we (actually, it was my idea) decided to sell our house and just about everything else we owned, and get a motorhome and travel full time, since I was on disability and hubby took early retirement. Yes, the drug mentioned (gaba......?) was responsible for the severe reactions I experienced; Lyrica was suggested, but it costs $35 per month......since I have 5 "payment plans" for the doctors, hospitals, and treatments, my SS budget is getting stretched to its limit. After 41 years together I just think that me & my husband deserve some "good times" together, and I can't afford retirement AND constant medical treatment. Hubby has been great helping me get thru my medical issues (oh, by the way, I had brain surgery for a cyst 10 years ago; heart disease, arteries that are too risky to stent, extremely high blood pressure, which is finally under control thanks to various drugs).....which probably is influencing me in saying ENOUGH IS ENOUGH.  Health or Happiness?   

Breast cancer

Hi pandagypsy,

I'm so sorry to read about your problems with finances and treatment consequences.  And yes, you and your husband deserve all the fun and good times possible.

I am an 18-year breast cancer survivor, triple negative at age 41, and diagnosed state 3c ovca May 2013 at the age of 58.  Like you, I didn't know there was a link between the two cancers and really thought my ovaries were dead since my last period was my first chemo back in 1996.

Since you were only 28 years old when first diagnosed with breast cancer, did you ever get tested for BRCA?  I didn't until my ovca diagnosis and then it was almost too late, except it allowed me to participate in a parp inhibitor trial.  

I don't mean to be too personal, but are you on social security disability?  If so, after two years, Medicare is automatic.  If you are not, you really should apply because stages 3 and 4 ovca are almost always approved.   

Alexandra

pandagypsy said:

Thank you for the feedback

I am very happy to read some feedback on my thoughts of continuing treatments for cancer.  I first experienced chemo with breast cancer when I was 28.....a reoccurance led to the unanimous decision (me & my husband!) for a bilateral mastectomy, just to "get rid of it all....and not have it be an issue over and over again".  I will be 60 this year, so my stage IV ovarian cancer at 55 was quit a shock............I was not aware of the connection between breast and ovarian cancer.......part of me says "shame on me" for not knowing...........but more than that, "shame on my doctors" who took my health histories and could only congratulate me on being a survivor. The 5 years following breast cancer treatment were annual liver and bone scans...I thought that was the only concern.

My main reason right now to avoid future treatments is financially motivated...sad, but true. Just a year previous to my stage IV ovarian cancer reocurrance, we (actually, it was my idea) decided to sell our house and just about everything else we owned, and get a motorhome and travel full time, since I was on disability and hubby took early retirement. Yes, the drug mentioned (gaba......?) was responsible for the severe reactions I experienced; Lyrica was suggested, but it costs $35 per month......since I have 5 "payment plans" for the doctors, hospitals, and treatments, my SS budget is getting stretched to its limit. After 41 years together I just think that me & my husband deserve some "good times" together, and I can't afford retirement AND constant medical treatment. Hubby has been great helping me get thru my medical issues (oh, by the way, I had brain surgery for a cyst 10 years ago; heart disease, arteries that are too risky to stent, extremely high blood pressure, which is finally under control thanks to various drugs).....which probably is influencing me in saying ENOUGH IS ENOUGH.  Health or Happiness?   

Pandagypsy

I am very sorry about financial hardship affecting your decision. You've already been through so much.

Do you know that clinical trials are completely free to the patient (drugs, blood tests, CT scans, they even compensate for travel expenses)?

Check out PARP inhibitor (Rucaparib) trial ARIEL2 recruiting at Mayo Clinic Jacksonville, FL. Contact Kendra Brown brown.kendra@mayo.edu

All they ask is a blood test and doctor's visit every 4 weeks and CT scan every 8 weeks. You simply take the drug at home.

Sorry for pushing unsolicited advice on you...

 

pandagypsy

Morkies said:

Breast cancer

Hi pandagypsy,

I'm so sorry to read about your problems with finances and treatment consequences.  And yes, you and your husband deserve all the fun and good times possible.

I am an 18-year breast cancer survivor, triple negative at age 41, and diagnosed state 3c ovca May 2013 at the age of 58.  Like you, I didn't know there was a link between the two cancers and really thought my ovaries were dead since my last period was my first chemo back in 1996.

Since you were only 28 years old when first diagnosed with breast cancer, did you ever get tested for BRCA?  I didn't until my ovca diagnosis and then it was almost too late, except it allowed me to participate in a parp inhibitor trial.  

I don't mean to be too personal, but are you on social security disability?  If so, after two years, Medicare is automatic.  If you are not, you really should apply because stages 3 and 4 ovca are almost always approved.   

NOTHING is too personal for me to discuss!

Thanks Morkies for your comments.  Yes, I am on SSD, have been since my stage IV diagnosis. I've learned since that this diagnosis made you automatically approved, since some "compassionate SS law" was passed the previous year. I was on Medicaid for the financially needy for 2 years......what that meant was that after I surpassed medical bills over the $$$ amount determined by the state of Florida, everything was paid, less a $2 copay. Some formula they use put me at around $2300 per month.............fine when I was undergoing treatment....fine when the dr. ordered PET scans.....NOT fine when he ordered a CAT scan, which was under $2k. Yes, I am on a Medicare advantage plan, am not old enough for a supplemental plan to cover 100%, and my insurance guy says supplemental rates for me with my health history would be EXPEN$IVE! He works closely with cancer patients and has found me the best plans available.

I haven't been tested for BRCA, not sure how this is covered by insurance.  'with a family history of maternal grandmother, and mother, both dies from breast cancer, the dr.s have automatically assumed a genetic connection.  My sister is afraid to get tested as her dr. advised her that it would be very hard and expensive to get insurance if she tests positive.  My 41 year old daughter is too afraid just because she has seen both my mom and myself go thru cancer.  I remind her to tell her dr. everything and don't miss appts.  So far she has been heeding my advice.

Morkies

pandagypsy said:

NOTHING is too personal for me to discuss!

Thanks Morkies for your comments.  Yes, I am on SSD, have been since my stage IV diagnosis. I've learned since that this diagnosis made you automatically approved, since some "compassionate SS law" was passed the previous year. I was on Medicaid for the financially needy for 2 years......what that meant was that after I surpassed medical bills over the $$$ amount determined by the state of Florida, everything was paid, less a $2 copay. Some formula they use put me at around $2300 per month.............fine when I was undergoing treatment....fine when the dr. ordered PET scans.....NOT fine when he ordered a CAT scan, which was under $2k. Yes, I am on a Medicare advantage plan, am not old enough for a supplemental plan to cover 100%, and my insurance guy says supplemental rates for me with my health history would be EXPEN$IVE! He works closely with cancer patients and has found me the best plans available.

I haven't been tested for BRCA, not sure how this is covered by insurance.  'with a family history of maternal grandmother, and mother, both dies from breast cancer, the dr.s have automatically assumed a genetic connection.  My sister is afraid to get tested as her dr. advised her that it would be very hard and expensive to get insurance if she tests positive.  My 41 year old daughter is too afraid just because she has seen both my mom and myself go thru cancer.  I remind her to tell her dr. everything and don't miss appts.  So far she has been heeding my advice.

Malpractice?

Wow, pandagypsy, you had breast cancer at age 28 and both mother and grandmother died from breast cancer and no one ever suggested a BRCA test?  Your age alone would warrant it or your familial ties alone would warrant it, but both together it is ridiculous that you were never tested!  I'm talking about a decade ago or longer, long before you were diagnosed with ovca you should have been tested and might have discovered you are BRCA+ and could have had a hysterectomy and avoided all of the above.  If I were you, I would contact a malpractice attorney and discuss it.  It costs nothing to see if you have a case and you might be entitiled to compensation.  If you want to know more about why I'm suggesting this, you may contact me through the private email.

One more suggestion is that the drug trial that I'm on, olaparib, has just received FDA approval for BRCA+ recurrent ovca and called Lynparza.  I've been on it one year and the side effects are just mild nausea in the beginning and fatigue.  Ask your onc if you can try it - you may have to be tested for BRCA, but the new test is supposedly cheaper and faster and I imagine that Medicare would pay for it.

pandagypsy

Alexandra said:

Pandagypsy

I am very sorry about financial hardship affecting your decision. You've already been through so much.

Do you know that clinical trials are completely free to the patient (drugs, blood tests, CT scans, they even compensate for travel expenses)?

Check out PARP inhibitor (Rucaparib) trial ARIEL2 recruiting at Mayo Clinic Jacksonville, FL. Contact Kendra Brown brown.kendra@mayo.edu

All they ask is a blood test and doctor's visit every 4 weeks and CT scan every 8 weeks. You simply take the drug at home.

Sorry for pushing unsolicited advice on you...

 

an idea!

That is why I love this discussion board........ideas! Thanks for the info on the trials.  My dr. can't find trials for me, but my husband and I have had several discussions on finding a new onc.  Personally, we like him, and the nurse prat. working with him; it's just that FLORIDA CANCER SPECIALITS AND RESEARCH are harrassing us for $$$$$$$ every chance they get. We are regularly called into the "financial counselor" before or after appts.; a big deal was being made when I told them my co-pay for 2015 is now $25, not $30....we could not believe the approvals we had to wait for before they would "accept" the payment that was $5 less than what the list stated. We are both on SS, but according to them, we are too "wealthy" for any help from their foundation. The Dr. is wanting to do post chemo scans (after one was done in Oct. at the end of chemo)....I refuse to keep paying $200+ , which, of course, they collect at the time of scan.......

Does anyone have suggestions for onc services just north of Tampa? Are there nonprofits that are actually concerned with the patients? We have found cancer to be a very profitable bu$ine$$ for FCSR. Jacksonville sounds promising, but I would have to board my 2 dogs, since it is pretty far from here.......I've been to Shands in Gainsville(GO GATORS!) but that was a 3 hour trip one way. $$$$$ always gets in the way 

yamster34

I am only 44 years old and I

I am only 44 years old and I was diagnosed with stage 4 ovarian cancer more than 6 months ago. The doctor seemed to think I was going to die soon after being diagnosed. I have not had surgery to have anything removed or gotten any chemotherapy or radiation. At first my family thought I was giving up, but they soon realized what a great decisiin my husband and I had made when they saw how well I was/am doing! You are not giving up, you are living life on your terms and choosing to feel good.. There is nothing wrong with that! Stand strong on your decision and don't let anyone make you question it. There will be people who don't understand, but it is up to you what you want to do.

pandagypsy

yamster34 said:

I am only 44 years old and I

I am only 44 years old and I was diagnosed with stage 4 ovarian cancer more than 6 months ago. The doctor seemed to think I was going to die soon after being diagnosed. I have not had surgery to have anything removed or gotten any chemotherapy or radiation. At first my family thought I was giving up, but they soon realized what a great decisiin my husband and I had made when they saw how well I was/am doing! You are not giving up, you are living life on your terms and choosing to feel good.. There is nothing wrong with that! Stand strong on your decision and don't let anyone make you question it. There will be people who don't understand, but it is up to you what you want to do.

Thank you for the supporting words

I am so sorry that you have become one of the group.........not only does cancer suck, but also the treatments. Just this morning I was thinking about the last year I "lost" because of treatment for a 2nd reoccurance of OC. I don't even know what "getting back to normal" means anymore........when was the last time I was "normal"? You are proving my thinking that you never know how this disease will progress..........OR NOT! All we can do is live our life the way we choose is best..........and right now, I am thinking that becoming handicapped by more treatments is NOT what I want. Just how much abuse can a body take from treatments before the "effects" become worse than the disease?  ........just sayin'............

yamster34

That is true about the

That is true about the treatment being worse than the disease! It seems to me that is true in many situations. Plus, our bodies can only handle so much! Hopefully you will know what normal is very soon! We get a lot of ridicule for making a  decision to go against what so many people seem to expect! Don't ever let that ridicule deter you from what is best for you!

Defying Disaster

Please, before you give up

Please, before you give up because of treatment side effects, make sure you are getting proper treatment. Are you being treated by a gynecologic oncologist? If not, you are much less likely to be offered the most effective treatment. Have you educated yourself about type, stage, grade of OC?

If possible, seek treatment at a university affiliated hospital. Check our your gyn/oncologists credentials and patient ratings. Get the best treatment options from the best physicians. Then decide if you are ready to throw in the towel.

I am an RN. My sister is having a second recurrance of Stage IV, low to medium grade serous epithelial OC. Our mother died of peritoneal OC. I have had to oversee my sister's treatment to assure she is getting the most effective treatment options with the fewest side effects. We research side effects and treatment options for the side effects before starting new therapy. I developed a concise medical record summary of pathology reports, imaging studies, CA-125 results, treatments, symptoms and doctors progress notes, arranging all in chronological order. This information helps greatly when speaking with physicians whose time is too limited to make the best treatment decisions without having this treatment and response chronology at hand. 

There have many times during my nursing career when I wished I could have told the patients to go elsewhere for treatment because they had chosen a physician who was not particularly competent or because their particular problem could have been treated better at a different facility.

I urge you not to give up until you are certain you are getting the best possible treatment by the best gyn/onc around.

Best wishes to you.

pandagypsy

Defying Disaster said:

Please, before you give up

Please, before you give up because of treatment side effects, make sure you are getting proper treatment. Are you being treated by a gynecologic oncologist? If not, you are much less likely to be offered the most effective treatment. Have you educated yourself about type, stage, grade of OC?

If possible, seek treatment at a university affiliated hospital. Check our your gyn/oncologists credentials and patient ratings. Get the best treatment options from the best physicians. Then decide if you are ready to throw in the towel.

I am an RN. My sister is having a second recurrance of Stage IV, low to medium grade serous epithelial OC. Our mother died of peritoneal OC. I have had to oversee my sister's treatment to assure she is getting the most effective treatment options with the fewest side effects. We research side effects and treatment options for the side effects before starting new therapy. I developed a concise medical record summary of pathology reports, imaging studies, CA-125 results, treatments, symptoms and doctors progress notes, arranging all in chronological order. This information helps greatly when speaking with physicians whose time is too limited to make the best treatment decisions without having this treatment and response chronology at hand. 

There have many times during my nursing career when I wished I could have told the patients to go elsewhere for treatment because they had chosen a physician who was not particularly competent or because their particular problem could have been treated better at a different facility.

I urge you not to give up until you are certain you are getting the best possible treatment by the best gyn/onc around.

Best wishes to you.

Thanks!

Thanks so much for your response Defying Disaster........I still believe in my life's byline:  NEVER SAY NEVER.  I did have an onc. gyn. and I believe THAT made a big difference. I've previously gone the university/teaching hospital when I was in my 20's; I do think I received excellent care that way, all of the "new & improved" treatments.  That being said, the long travels did take a toll on us and I am not ready for that again. A big blockade for me is the cost; I am on SS disability so I have medicare (well, an advantage plan with BX, which is pretty good from what I have seen) I'm not old enough for supplemental, even if I could afford it.  The best chances of getting any financial help is to be SINGLE, and after 42 years I really don't want a divorce.  My Dr. wanted me on Avastin last treatment, but it would cost me $1000 per treatment as my co-pay.  We explored all the ways of applying for extra help, but, as a couple on SS, we are "TOO RICH"

Defying Disaster

pandagypsy said:

Thanks!

Thanks so much for your response Defying Disaster........I still believe in my life's byline:  NEVER SAY NEVER.  I did have an onc. gyn. and I believe THAT made a big difference. I've previously gone the university/teaching hospital when I was in my 20's; I do think I received excellent care that way, all of the "new & improved" treatments.  That being said, the long travels did take a toll on us and I am not ready for that again. A big blockade for me is the cost; I am on SS disability so I have medicare (well, an advantage plan with BX, which is pretty good from what I have seen) I'm not old enough for supplemental, even if I could afford it.  The best chances of getting any financial help is to be SINGLE, and after 42 years I really don't want a divorce.  My Dr. wanted me on Avastin last treatment, but it would cost me $1000 per treatment as my co-pay.  We explored all the ways of applying for extra help, but, as a couple on SS, we are "TOO RICH"

Keeping doors open

Please explore other treatment options that do not cost $1000 per treatment. My sister was on Avastin and had to stop due to terrible side effects. There are other good options. What type, stage, grade cancer do you have? Have you asked your physician for other treatment options? Are there any gyn/oncologists in your area?  Could you manage one more trip to the nearest university affiliated hospital to get another opinion before you shut the door on treatment? Financial counselors at a big regional teaching hospital may be able to help.

I don't want you to regret your decision or change your mind down the road only to find that treatment options that may have been available earlier are not available or would not be as effective later, when there is more tumor mass You may qualify for a study that would pay travel costs and all treatment costs.

On the other hand, you are the only one who knows when it is time to stop being a patient and just be. 

I hope you can take some time to rest, enjoy what you love, and come to a well-considered decision.

I wish you peace, love and support on the road to making that decision.

Abbycat2

Defying Disaster said:

Keeping doors open

Please explore other treatment options that do not cost $1000 per treatment. My sister was on Avastin and had to stop due to terrible side effects. There are other good options. What type, stage, grade cancer do you have? Have you asked your physician for other treatment options? Are there any gyn/oncologists in your area?  Could you manage one more trip to the nearest university affiliated hospital to get another opinion before you shut the door on treatment? Financial counselors at a big regional teaching hospital may be able to help.

I don't want you to regret your decision or change your mind down the road only to find that treatment options that may have been available earlier are not available or would not be as effective later, when there is more tumor mass You may qualify for a study that would pay travel costs and all treatment costs.

On the other hand, you are the only one who knows when it is time to stop being a patient and just be. 

I hope you can take some time to rest, enjoy what you love, and come to a well-considered decision.

I wish you peace, love and support on the road to making that decision.

Great advice , pandagypsy!

Good advice, Pandagypsy! I think Moffitt Cancer Center is a not for profit cancer treament center located in Tampa. I was impressed with my experience there. I am sorry to learn how cancer treatment has been so costly for you , both financially and in terms of your quality of life. I absolutely understand why you have arrived at a place where "enough is enough " has become a mantra that resonates inside both your heart and your head. I know that I may die from this aggressive, advanced stage uterine papillary serous cancer that is so similar to the typical form of OV.  I have come to the conclusion that my QUALITY of life is far more important to me than how many more years I can survive with diminished pleasure in daily life.  Yesterday evening, I drove 30 plus miles north to listen to my gyn onc give a talk about the state of affairs of treatment for gynecologic cancers . I walked away from that with greater resolve not to put myself through needless, useless torture euphemistically called "treatment " just so that I can survive another year. I want to live and not just "survive" and I think you may agree pandagypsy.  Should my cancer recur, I will research the treatment options available plus the side effects before I go blindly into believing that the treatment will work. Have you noticed that the standard of care, i.e., evidence based treatment, for initial diagnosis is always carboplatin/taxol chemotherapy? And have you noticed that for some women it simply doesn't stop the gradual progression of their disease because it is ineffectual? I figure it is a lousy crap shoot just how well treatment works for any given woman and- if you are a person who does not see life through rose-colored glasses- you are aware that treatment may increase your "disease free survival" and your "overall survival time", but it can 't prevent the inevitable health decline . I apologize for my brutally honest point of view, but I have personally never lived in a make-believe world. I plan to live my life as fully and as richly as I can RIGHT NOW because that is all that matters and because I can't count on being here in the next few years.

 

NafahI

pandagypsy said:

I'm hearing you out Alexandra!

I've always said NEVER SAY NEVER! I am just tired of being marched on over to the "financial counselor" after visits with the dr. My dr, is with FLORIDA CANCER SPECIALIASTS and that is probably a lot of the problem. In the past, we have traveled for my treatment (I will be 60; when I had breast cancer @ 28, we were driving 2 1/2 hours each way to  a university medical center; when I had a colloid cyst in my brain 10 years ago, the hospital was an hour 1/2 from home. I agree with my husband on the added stress factor of adding the distance to an already horrible problem; I would love to talk to another ONC who is with a non-profit cancer center but they are 1 1/2 hours away. I would also like to go to the university I was recently sent to by my cardiologist, but that is 3 hours, each way.....we had to board 2 dogs when I went there for a consultation. Yes, I put a lot of thought into this.

Yes, it was Gabapantin that gave me the severe reaction. Lyrica will cost too much under my insurance plan. I'm hoping the neuropathy will get better; my legs and feet are better, the hands are a big issue. Currently, due to costs, the dr. is controlling the hand pain by keeping me on regular doses of pain pills.  Yes, insurance will give me that stuff at no cost to me.............unbelievable.......................

 

pandagypsy laugh

 Hey pandagypsy  I know how you feel, in North Florida  I've been told " If you don't have the $125 to pay we can't help you today you can come back when you got it.

I left and haven't returned since. I decide to take my chances on my own without the ddisrespect. Do what you want to. free your mind from this bondage of cancer and feel good about you. The doctors don't feel your pain, your depression, your can't sleep at nights , your fatigue, your nervousness, your memory loss. Life is you, you're to be able to smile and feel happy even for the simplest of things as the sun warmth.

NafahI

yamster34 said:

I am only 44 years old and I

I am only 44 years old and I was diagnosed with stage 4 ovarian cancer more than 6 months ago. The doctor seemed to think I was going to die soon after being diagnosed. I have not had surgery to have anything removed or gotten any chemotherapy or radiation. At first my family thought I was giving up, but they soon realized what a great decisiin my husband and I had made when they saw how well I was/am doing! You are not giving up, you are living life on your terms and choosing to feel good.. There is nothing wrong with that! Stand strong on your decision and don't let anyone make you question it. There will be people who don't understand, but it is up to you what you want to do.

Take your life in your

Take your life in your control and you will be at peace,