Dr's telling me to give up chemo
Comments
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I would start Monday morningkellyh33 said:Don't give up
In my opinion you need to find another doctor. Mom's doctor tried everything under the sun to save her and you deserve a doctor that will do the same for you. Anything less is not acceptable.
Keep fighting, show them they are wrong.
I would be searching for another doctors opinion or maybe even two more opinions on Monday morning. You deserve it! It just doesnt sound right. Keep us posted on what you find out.0 -
if carbo worked so well, but
if carbo worked so well, but you had to stop because of allergic reaction, I recommend you look into carbo desensitizing methods. I know there are cancer centers that successfully perform this procedure. google it, and you will find information.
I read about successfully overcoming carbo allergies.
Good luck.0 -
Absolutely not!
If you are healthy enough to keep up the fight and there are still avenues to try, if you want to keep on your doc should keep cheering you on! There are trials to look into...my gosh if you want to and CAN fight I cannot imagine why your doc would say something like this. I would ask him or her exactly WHY he feels it's time to give up the fight (since there may be factors which you are unaware of). But if it's just a lame out of "nothing seems to be working," I would stomp,out and find someone less lazy and more invested in your success!0 -
another thing to consider
another thing to consider is, why the doctors are telling you to get off chemo.
It may not be because they have given up on you, but rather because you are largely asymptomatic and the cancer is staying stable, while no chemo seems to be working very well right now. In this case, the doctors' recommendation may be more in line of "let's give your body a bit of rest" rather than keep poisoning you without any meaningful benefit while there seems to no crisis to justify all out war.
There are studies that show that sometimes chemo that did not work well work better when you don't use it for a while. I am labeled "platinum resistant", but he will use it if needed later after there is a sufficient platinum-free-interval
I don't have all the data about you, but one question I have is: did your one tumor go up and down in size depending on how well a particular chemo is working or not? How often are you getting the scan?
So, if the TUMOR size remains stable, and it's not spreading, bombarding the body with more and more poison just based on CA125 even though chemo does not seem to lower the number consistently seems like net negative over all.
I have a pretty late stage DX, and I feel that my cancer will be my life time partner going forward (recurred only after 4 months of initial remission) if I am lucky. From that angle, preserving the body's natural resources is a very important factor in deciding what kind of treatment is worth the cost.
I am not a doctor, and I can't offer medical opinions. However, if I were you, I would actually take a break other than the carbo desensitizing protocol I might try. If carbo again does not work this time even after the desensitizing protocol, and the disease seems to NOT going crazy, I would give my body a chance to recover for a more meaningful fight later one. By not giving a body a chance to regain it's chemo sensitivity (in a good way) while your disease is rather stable, you may be robbing yourself of an opportunity to deploy some heavy duty arsenal down the road when/if the disease starts to act aggressively - the heavy duty chemo that might work later when you critically need it if you had a sufficient interval free of these drugs.
Again, layman's opinion. However, the more I learn about this whole affair, the more I am convinced that treatment decisions for recurrent, late stage cancer is more art than science, and not even the experienced doctors mastered all the nuances of this art. When it enters this realm of art, a well informed, intelligent patient's self advocacy becomes an extremely important factor.
Good luck.0 -
Sometimes the side effects
Sometimes the side effects of the chemo are more dangerous than the cancer. One of the women in my local group actually died from the cumulative effects of 13 years on chemo.
You have to remember that the perfect treatment is strong enough to kill the cancer without killing the patient. This stuff is poison - literally.
Although another opinion never hurts - and I would look for a doctor with a very agressive rep - eventually you reach a point where the quest for effective treatment gets more and more desperate, and you end up sacrificing a lot in the bargain.
I think it's time to ask some hard questions:
If you only have one small tumor, can it be removed surgically? Is it the sole source of the elevated CA125? Or do the doctors suspect that there are mets that just aren't big enough to show up on the CT scan yet? Is a PET scan a possibility?
I would ask exactly what they mean by stopping the chemo. Forever, or for a few weeks?
This is the really tough one, and I understand that some people will never ask, because they don't want to know. I would ask, but your mileage may differ: have I celebrated my last Christmas?
I agree, though, that I would never give up. I have already come to terms with the fact that I am almost certainly going to die from OC, and when the time comes that they can give me a timeline, my plan is to research doctors, surgery, treatment, etc that might extend my life, and if that proves futile, I will go home and live every single day - celebrate it for the gift that it is. But I still won't give up. I will fight to take every single breath, until I am too weak to fill my lungs one last time. I will not be one of those people whose obits you read, and it says, "she died peacefully." I don't think I can make peace with death. I don't fear it, but neither am I looking to make friends with it.
Carlene0 -
Kathy
Sending hugs and prayers for your peace of mind...
Noticing one of your docs is from Mass General, have you explored docs over at Dana Farber?
This is where I go for treatment..
Laurie
HANG IN!0 -
NEVER GIVE UP.
You've
NEVER GIVE UP.
You've gotten some good advice from both sides. Sometimes your body needs a break to take advantage of the chemo regimen or just get another opinion from a different doctor.
I'm a strong believer that we all react different to these treatments so the doctors really don't know the answer and make their best guesses. Going to another doctor may give you a different best guess that someone may not have thought about yet.
Either way, my thoughts and prayers are with you.
Annette0 -
Thanks for all the replysawynn804 said:NEVER GIVE UP.
You've
NEVER GIVE UP.
You've gotten some good advice from both sides. Sometimes your body needs a break to take advantage of the chemo regimen or just get another opinion from a different doctor.
I'm a strong believer that we all react different to these treatments so the doctors really don't know the answer and make their best guesses. Going to another doctor may give you a different best guess that someone may not have thought about yet.
Either way, my thoughts and prayers are with you.
Annette
A lot to think about these passed few days. First the tumor under my arm, I did ask if it could be removed and the answer was it will only grow back, what kind of answer is that. I'd rather have it removed and hopefully it might not grow back right now. My Dr at the Seacoaost Cancer center has talked about getting me to safe number to take some time off, but the numbers climb real fast for me so for now she wanted to continue with chemo. Never heard about desentizing- carbo, will mention that to the Dr too. Another issue I have, I have asked if I should have a ct or pet,last one was in november, I want to know whats going on, maybe thats to soon, Dr said not necessary because I'm not asymptomatic, don't I hate that word. Third Dr from Boston is now going to be talking to my Dr at seacoast and Mass Gen. about all the issues I have with my care and further treatments. thanks everyone, excuss the bad spelling and I'm really trying to learn more and more about my cancer. You ladies are so amazing with all your knowledge. Kathy0 -
Kathy,I won't second guessgarden gal said:Thanks for all the replys
A lot to think about these passed few days. First the tumor under my arm, I did ask if it could be removed and the answer was it will only grow back, what kind of answer is that. I'd rather have it removed and hopefully it might not grow back right now. My Dr at the Seacoaost Cancer center has talked about getting me to safe number to take some time off, but the numbers climb real fast for me so for now she wanted to continue with chemo. Never heard about desentizing- carbo, will mention that to the Dr too. Another issue I have, I have asked if I should have a ct or pet,last one was in november, I want to know whats going on, maybe thats to soon, Dr said not necessary because I'm not asymptomatic, don't I hate that word. Third Dr from Boston is now going to be talking to my Dr at seacoast and Mass Gen. about all the issues I have with my care and further treatments. thanks everyone, excuss the bad spelling and I'm really trying to learn more and more about my cancer. You ladies are so amazing with all your knowledge. Kathy
Kathy,
I won't second guess your doctors: after all they have all the facts and they are trained professionals and I am not.
I will only say what I would do if I were in your shoes.
(1) I would insist that I get a CT or PET scan, whichever scan you used last time so that I can tell what is the situation NOW compared to what it was in Nov - whether disease progressed fast, slow, or to other places. Two months is a long time and a lot can happen. I don't understand your doctor's logic that you won't need a scan because you are symptomatic. Scans are NOT just there to confirm or deny the presence of the disease. They provide very valuable and critical information regarding if/how the disease is progressing.
If your tumor is still in one place and it's stable, I would seriously consider taking a bit of chemo break: they are not really working anyway for now, and they may work better if you take a break from them. Besides, it gives your body to recover from cumulative effects of all the poison.
If your tumors have grown/spread during last two months while the chemos were not working, it's an entirely difference state of affairs. It might prompt you to consider different options such as having a debulking surgery so that you can harvest your tumor samples and do cell assay testing and/and perhaps participate in tumor vaccine clinical trial (like the one in U Penn) that requires the patient's own tumor samples to create an individualized vaccine. If chemos are not working for you, this vaccine angle may be your option.
(2) I am seriously baffled by your doc's statement that a surgery is not recommended since it may just grow back. I have never heard of this. After my initial debulking surgery, they left a good lime sized tumor that couldn't be resected. Chemo melted it away completely. However, when I recurred, the first thing they checked is whether it recurred there (as in the same location). It did not. However, if it had, they would have recommended a surgery for me. It's clear that if one location becomes a repeat offender, they would like to surgically deal with it (with the surrounding areas: it was on the colon). This is in contrast to your doc's statement.
(3) If a single location is all that is wrecking havoc with you, you could also consider radiation as an option.
Again, I am not a doctor and I don't have all the facts. However, one thing I learned throughout all this is that there is way more the "art" component than science when it comes to recurrent, advanced stage ovarian cancer, and no single doctor's call is a final call. By talking to women who are all going through this, I realized that the best doctors with world renown in the top cancer centers are responding differently to very similar conditions of us, the patients. If the whole thing is a very well established science, we won't see this level of variance, even if we consider individual differences (patients', that is).
And, even the best doctors can be wrong. They have their OWN blind spots. I question and verify EVERY recommendation my doctor makes: I respect him, and trust him, AND we have a great rapport: as a professional to professional. But I verify EVERYTHING. I spend decades working in a very competitive environment with some major braniacs, and the people I worked with are no less intellectually endowed than any of the world's very best doctors. And even in an industry like that, we all make mistakes. I certainly have. So, why wouldn't the doctors, even the best ones?
Here is something I post a while back. I proved my very very good doctor wrong (sort of).
http://csn.cancer.org/node/2317540 -
Thanksevertheoptimist said:Kathy,I won't second guess
Kathy,
I won't second guess your doctors: after all they have all the facts and they are trained professionals and I am not.
I will only say what I would do if I were in your shoes.
(1) I would insist that I get a CT or PET scan, whichever scan you used last time so that I can tell what is the situation NOW compared to what it was in Nov - whether disease progressed fast, slow, or to other places. Two months is a long time and a lot can happen. I don't understand your doctor's logic that you won't need a scan because you are symptomatic. Scans are NOT just there to confirm or deny the presence of the disease. They provide very valuable and critical information regarding if/how the disease is progressing.
If your tumor is still in one place and it's stable, I would seriously consider taking a bit of chemo break: they are not really working anyway for now, and they may work better if you take a break from them. Besides, it gives your body to recover from cumulative effects of all the poison.
If your tumors have grown/spread during last two months while the chemos were not working, it's an entirely difference state of affairs. It might prompt you to consider different options such as having a debulking surgery so that you can harvest your tumor samples and do cell assay testing and/and perhaps participate in tumor vaccine clinical trial (like the one in U Penn) that requires the patient's own tumor samples to create an individualized vaccine. If chemos are not working for you, this vaccine angle may be your option.
(2) I am seriously baffled by your doc's statement that a surgery is not recommended since it may just grow back. I have never heard of this. After my initial debulking surgery, they left a good lime sized tumor that couldn't be resected. Chemo melted it away completely. However, when I recurred, the first thing they checked is whether it recurred there (as in the same location). It did not. However, if it had, they would have recommended a surgery for me. It's clear that if one location becomes a repeat offender, they would like to surgically deal with it (with the surrounding areas: it was on the colon). This is in contrast to your doc's statement.
(3) If a single location is all that is wrecking havoc with you, you could also consider radiation as an option.
Again, I am not a doctor and I don't have all the facts. However, one thing I learned throughout all this is that there is way more the "art" component than science when it comes to recurrent, advanced stage ovarian cancer, and no single doctor's call is a final call. By talking to women who are all going through this, I realized that the best doctors with world renown in the top cancer centers are responding differently to very similar conditions of us, the patients. If the whole thing is a very well established science, we won't see this level of variance, even if we consider individual differences (patients', that is).
And, even the best doctors can be wrong. They have their OWN blind spots. I question and verify EVERY recommendation my doctor makes: I respect him, and trust him, AND we have a great rapport: as a professional to professional. But I verify EVERYTHING. I spend decades working in a very competitive environment with some major braniacs, and the people I worked with are no less intellectually endowed than any of the world's very best doctors. And even in an industry like that, we all make mistakes. I certainly have. So, why wouldn't the doctors, even the best ones?
Here is something I post a while back. I proved my very very good doctor wrong (sort of).
http://csn.cancer.org/node/231754
I agree with everything you have said and now will be insisting on a more agressive atitude from the Dr. I also will be telling them I want another ct or pet scan as soon as possible. If there is still just one tumor I have already talked to them about having it removed, don't want hear it will only grow back again.Also considering seeing another Dr about all of this. I also agree it may be time for a break from chemo, hopefully things will change this week when I talk more with Dr at the end of the week. Thanks again will keep you updated. Kathy0 -
kathygarden gal said:Thanks
I agree with everything you have said and now will be insisting on a more agressive atitude from the Dr. I also will be telling them I want another ct or pet scan as soon as possible. If there is still just one tumor I have already talked to them about having it removed, don't want hear it will only grow back again.Also considering seeing another Dr about all of this. I also agree it may be time for a break from chemo, hopefully things will change this week when I talk more with Dr at the end of the week. Thanks again will keep you updated. Kathy
I would very much
kathy
I would very much appreciate it if you share with us how things are going. We all learn when we are sharing our experience and the recommendations and inputs from our own doctors.
One of the major benefits of discussion like this is that indirectly we are getting second, third, and fourth opinions. Given how much uncertainty and diversity there is, every bit of data helps.
good luck!0 -
I certainly willevertheoptimist said:kathy
I would very much
kathy
I would very much appreciate it if you share with us how things are going. We all learn when we are sharing our experience and the recommendations and inputs from our own doctors.
One of the major benefits of discussion like this is that indirectly we are getting second, third, and fourth opinions. Given how much uncertainty and diversity there is, every bit of data helps.
good luck!
share everything with all of you. Tomorrow I will have blood work done and although I don't have an app. with my onoc. she always will come by and chat if I want. Have a lot of questions and need some answers sooner than later. will update as soon as possible. I agree every bit of data helps.Looking to have an app. next week at the lastest to discuss a lot of concerns and questions I have. Kathy0 -
Never give up. If you are
Never give up. If you are near Mass General, have you been to Dana Farber? I live in NH and have a friend that has stage 4 cancer, tumors in her liver and stomach and she goes to Dana Farber. They never once told her that there are no more options. You need to keep going, look for a trial and/or get different doctors. My prayers are with you....
Chris0 -
Kathy,
have you had cisplatin yet? If platinum works for you, cisplatin might be another choice. It tends to be harsher with the side effects than carboplatin, but overall seems to have better results too (according to both my onc's).
As someone has already mentioned, you can also get the carbo on a slow drip.
How are you feeling? Do you have energy? Your body condition and will to fight are much more indicative than the number, in my opinion.
Hang in there kiddo,
kathleen0 -
Hi Kathleenkayandok said:Kathy,
have you had cisplatin yet? If platinum works for you, cisplatin might be another choice. It tends to be harsher with the side effects than carboplatin, but overall seems to have better results too (according to both my onc's).
As someone has already mentioned, you can also get the carbo on a slow drip.
How are you feeling? Do you have energy? Your body condition and will to fight are much more indicative than the number, in my opinion.
Hang in there kiddo,
kathleen
No I'v never been on cisplatin. Feeling good, my energy is good in fact I think its great right now. I was suppose to go into Boston this past wednesday but I had to see my pcp for UTI. Had to rescedule the app. for next wed. This app. is with the Dr that said stop chemo if the numbers go up 2 more times. I guess a second look at things and talking with my dr here where I live has him changing his mind. This Dr is Clinical Director, Medical GYN/Oncology and the other DR I see is Chief, Vincent GYN/oncologic Division from Mass General Hospital in Boston. We will discuss all options.I'm being told we also will be talking about desensitizing me to have carboplatin ( hope I spelt that right). Thanks for inquiring how I'm doing. I plan on updating the board as soon as I know more and I diffently will mention cisplatin. I'll deal with any side affects so long as it works. Thanks again and I will let you know what happens. Kathy0
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