Sad Decision

Well here I am again.  I am sad to say that it looks like my mother can not continue with her chemo treatments.  Stage 1C 2 rounds of Carbo/Taxol.

She had such a violent reaction after the 2nd round, that she ended up in the hospital for 10 days, and 3 weeks after being released, she is still not back to feeling remotely normal. 

Having said that, she needs to go for round 3 - however there are so many barriers, it has left her feeling as though she has no choice but to surrender.  See, within 24hrs of her 2nd round she became VIOLENTLY ill, and was writhing with abdominal pain, vomitting and the "other".  It went on for a good 4 hours.  Her body was spasming, and she would just fling her arms every which way (I will get to this point in a second).  A few days after that she was rushed to the hospital - severe dehydration/etc. 

So now, they want to try administering a home IV - right after chemo, but the initial sickness was not due to dehydration it was the chemo.  Her fear, if she is alone at any given point (which she would be), and gets as ill as she did - what if her IV needle breaks in her arm or gets pulled out, and she does not have the strength to call someone.  (We can't get a health care worker to be with her 24/7 and I can't be there 24/7 or else I could lose my job (which we know are hard to come by these days).  Even if I was there and that happened - she was so violently ill, I could hardly keep up with her movements to place a bucket by her head let alone manage a broken or pulled out IV at the same time.  And again she was that bad for a good 4 hours.  :o(

She can't get a pic because she has narrow veins and they can't get the catheter up her arm - so it has to be an iv.  We asked if they would admit her to the hospital after chemo given her last recation and the doctor flat out refuses.  Although he admitted her reaction was the worse he's ever seen.

So ... she's at a rock and a hard place, and is sadly realising she's really got no choice - She's terrifed based on her last reaction, and is afraid to risk the iv situation - not too mention - she was not in need of the hydration the first time she got sick - this was purely chemo reaction based...

They suggested just Carbo - but she thinks why bother since her's is clear cell cancer (rare) and tougher to beat - so would Carbo on it's own really do anything anyway.

The worst thing - she is of the old school thought - that Dr.s are Gods, and while this one is refusing to admit her, she won't seek another opinon because this one is the be all and end all and she would be afraid of losing him or making him angry and him dropping her as a patient.

Sorry - I am at a loss and  just venting.

What kind of clear cell cancer?Sorry to bug and ask you this.

I don't know what a "pic" is, but why does she not have a port?  There are certain chemo's I have had that take 6-8 hours because the hydration is a long part of the chemo process.  I don't know the answer, but there have to be other solutions.  How old is your mom?  That probably makes a difference on how far she is willing to go with all this stuff.  It is not easy.  I am 52, and there are times I want to say "no more chemo", but I also know I have to do this to survive.  Good luck to your family and just say lots of prayers.

 

On 3/25/2009 what2do wrote:

Well here I am again.  I am sad to say that it looks like my mother can not continue with her chemo treatments.  Stage 1C 2 rounds of Carbo/Taxol.

She had such a violent reaction after the 2nd round, that she ended up in the hospital for 10 days, and 3 weeks after being released, she is still not back to feeling remotely normal. 

Having said that, she needs to go for round 3 - however there are so many barriers, it has left her feeling as though she has no choice but to surrender.  See, within 24hrs of her 2nd round she became VIOLENTLY ill, and was writhing with abdominal pain, vomitting and the "other".  It went on for a good 4 hours.  Her body was spasming, and she would just fling her arms every which way (I will get to this point in a second).  A few days after that she was rushed to the hospital - severe dehydration/etc. 

So now, they want to try administering a home IV - right after chemo, but the initial sickness was not due to dehydration it was the chemo.  Her fear, if she is alone at any given point (which she would be), and gets as ill as she did - what if her IV needle breaks in her arm or gets pulled out, and she does not have the strength to call someone.  (We can't get a health care worker to be with her 24/7 and I can't be there 24/7 or else I could lose my job (which we know are hard to come by these days).  Even if I was there and that happened - she was so violently ill, I could hardly keep up with her movements to place a bucket by her head let alone manage a broken or pulled out IV at the same time.  And again she was that bad for a good 4 hours.  :o(

She can't get a pic because she has narrow veins and they can't get the catheter up her arm - so it has to be an iv.  We asked if they would admit her to the hospital after chemo given her last recation and the doctor flat out refuses.  Although he admitted her reaction was the worse he's ever seen.

So ... she's at a rock and a hard place, and is sadly realising she's really got no choice - She's terrifed based on her last reaction, and is afraid to risk the iv situation - not too mention - she was not in need of the hydration the first time she got sick - this was purely chemo reaction based...

They suggested just Carbo - but she thinks why bother since her's is clear cell cancer (rare) and tougher to beat - so would Carbo on it's own really do anything anyway.

The worst thing - she is of the old school thought - that Dr.s are Gods, and while this one is refusing to admit her, she won't seek another opinon because this one is the be all and end all and she would be afraid of losing him or making him angry and him dropping her as a patient.

Sorry - I am at a loss and  just venting.

My heart goes out to you and your mom....dont know where you live but if it were close to me I would check on your mom for you.   I have dealt with ovarian cancer for a little over 5yrs now....have never gone thru the horror of what your mom is going thru but do know where she is coming from emotionally and mentally.   It is not always an easy thing to deal with as the patient and the caregiver....I took care of my husband when he had lung cancer for a year and I was totally stressed and did not know that my cancer had come back just before he died.   I have learned thru his illness and death and my cancer I will not always agree to what a Dr. says without finding other reasonable avenues...which to my way of thinking, and I am or was from the old school also, is to run as fast as you can from that Dr. and get one that is compassionate and concerned enough to realize just where the two of you are coming from.   Maybe he had a reasonable explanation for refusing to keep your mom in the hospital for a day or two but I would still move on.   That's me!   I hope your mom hangs in there and at least gets another dr. that you can respect....make sure it's an gynocolgic oncologist.  The best of luck to you both....are you at a big hospital that has ovarian specialists?

 

On 3/26/2009 curly66 wrote:

 

On 3/25/2009 what2do wrote:

Well here I am again.  I am sad to say that it looks like my mother can not continue with her chemo treatments.  Stage 1C 2 rounds of Carbo/Taxol.

She had such a violent reaction after the 2nd round, that she ended up in the hospital for 10 days, and 3 weeks after being released, she is still not back to feeling remotely normal. 

Having said that, she needs to go for round 3 - however there are so many barriers, it has left her feeling as though she has no choice but to surrender.  See, within 24hrs of her 2nd round she became VIOLENTLY ill, and was writhing with abdominal pain, vomitting and the "other".  It went on for a good 4 hours.  Her body was spasming, and she would just fling her arms every which way (I will get to this point in a second).  A few days after that she was rushed to the hospital - severe dehydration/etc. 

So now, they want to try administering a home IV - right after chemo, but the initial sickness was not due to dehydration it was the chemo.  Her fear, if she is alone at any given point (which she would be), and gets as ill as she did - what if her IV needle breaks in her arm or gets pulled out, and she does not have the strength to call someone.  (We can't get a health care worker to be with her 24/7 and I can't be there 24/7 or else I could lose my job (which we know are hard to come by these days).  Even if I was there and that happened - she was so violently ill, I could hardly keep up with her movements to place a bucket by her head let alone manage a broken or pulled out IV at the same time.  And again she was that bad for a good 4 hours.  :o(

She can't get a pic because she has narrow veins and they can't get the catheter up her arm - so it has to be an iv.  We asked if they would admit her to the hospital after chemo given her last recation and the doctor flat out refuses.  Although he admitted her reaction was the worse he's ever seen.

So ... she's at a rock and a hard place, and is sadly realising she's really got no choice - She's terrifed based on her last reaction, and is afraid to risk the iv situation - not too mention - she was not in need of the hydration the first time she got sick - this was purely chemo reaction based...

They suggested just Carbo - but she thinks why bother since her's is clear cell cancer (rare) and tougher to beat - so would Carbo on it's own really do anything anyway.

The worst thing - she is of the old school thought - that Dr.s are Gods, and while this one is refusing to admit her, she won't seek another opinon because this one is the be all and end all and she would be afraid of losing him or making him angry and him dropping her as a patient.

Sorry - I am at a loss and  just venting.

IMy heart goes out to you and your mom....dont know where you live but if it were close to me I would check on your mom for you.   I have dealt with ovarian cancer for a little over 5yrs now....have never gone thru the horror of what your mom is going thru but do know where she is coming from emotionally and mentally.   It is not always an easy thing to deal with as the patient and the caregiver....I took care of my husband when he had lung cancer for a year and I was totally stressed and did not know that my cancer had come back just before he died.   I have learned thru his illness and death and my cancer I will not always agree to what a Dr. says without finding other reasonable avenues...which to my way of thinking, and I am or was from the old school also, is to run as fast as you can from that Dr. and get one that is compassionate and concerned enough to realize just where the two of you are coming from.   Maybe he had a reasonable explanation for refusing to keep your mom in the hospital for a day or two but I would still move on.   That's me!   I hope your mom hangs in there and at least gets another dr. that you can respect....make sure it's an gynocolgic oncologist.  The best of luck to you both....are you at a big hospital that has ovarian specialists?

I forgot to add that if a Dr. gets mad at you for suggesting anything, asking for another opinion, questioning his reasons, definitely move on....a good Dr. wont do that but would even suggest it....think about it.

 

Hi everyone - thank you so much for your response.

I am pleased to say we found a way around the home iv - so my mom went for Carboplatin only - left out the Taxol (I hope this will be ok prognosis wise).  Our hope is that she won't have as bad a reaction and she should not be as sick, so the IV should be ok.

As per what kind of clear cell cancer she has - I did not know there was more than one clear cell cancer.  It's ovarian. But that's all I know.

We are in Canada and my mom is being treated at a major Cancer Centre however there are only 4 gyny specialists. 

I am praying that carbo will be ok - and still effective.

YOU ALL ARE AWESOME and CARING PEOPLE THANK YOU

I would suggest to continue with carboplatin since she had 2 treatments.Carboplatin is  much easier on your body.I had 6 treatments and after 3 I saw tremendous difference in my CA 125 but after that everything stayed as it was...did not move 1 point.I suppose your Mom needs someone to be with her at least during the chemo and 4 hours after chemo...so that is about 5 hours.Carboplatin takes only about 45 minut to administer.

I am so sorry for your Mom's troubles.I think all of us are keeping our doctors and believe them like they were Gods.I found out the hard way when my Onc did second surgery and she saw tiny bump in my peritoneal cavity...and she decided to end my surgery and closed me up.

When I asked her she said that I have persistent disease and that's it. No explanation why she did not take a sample of it or biopsid  larger nodules. In anybody's case we can't rely on doctors eyes  to do disease staging without taking biopsis.

Honey please find someone for your Mom she is so terrified and she needs someone to be with her at least during infusion and after.

Can you hire a neighbor or a friend?

Take care, Bella. 

 

Have any of you heard about "Oasis of Hope Hospital"...my mother had ovarian cancer and passed away a year ago at the age of 60...by the time I found out it was too late, so check this link out so you have the chance that my mother didn't.

 http://www.oasisofhope.com/

 

 

 

 

I just read your post that your mom is doing better. I'm so happy to hear that!! I had breast cancer 2 years ago, and I can definitely say that my doctors did all the difference in the world in my treatments. It seems that your mom's doctor has as much empathy as a worm. Maybe you could do some research and find a different oncologist that understands not only what drugs to administer, but also about how to support the patient and what the patient needs. If your mother needs around the clock care after each treatment because of her reactions to the meds, then that's that, and the doctor should be the first one to recommend the best possible care for the patient. Don't be put off by the comment that "this is the worst reaction he has ever seen". People react to treatment in all kind of different ways. Some are able to work part-time, others are unable to get out of bed for a week or even more after an infusion. There are all kind of variations, and the doctor should take your mother's reactions seriously enough to recommend the necessary support. I'm praying for you and your mom.

Monica

 

On 3/25/2009 what2do wrote:

Well here I am again.  I am sad to say that it looks like my mother can not continue with her chemo treatments.  Stage 1C 2 rounds of Carbo/Taxol.

She had such a violent reaction after the 2nd round, that she ended up in the hospital for 10 days, and 3 weeks after being released, she is still not back to feeling remotely normal. 

Having said that, she needs to go for round 3 - however there are so many barriers, it has left her feeling as though she has no choice but to surrender.  See, within 24hrs of her 2nd round she became VIOLENTLY ill, and was writhing with abdominal pain, vomitting and the "other".  It went on for a good 4 hours.  Her body was spasming, and she would just fling her arms every which way (I will get to this point in a second).  A few days after that she was rushed to the hospital - severe dehydration/etc. 

So now, they want to try administering a home IV - right after chemo, but the initial sickness was not due to dehydration it was the chemo.  Her fear, if she is alone at any given point (which she would be), and gets as ill as she did - what if her IV needle breaks in her arm or gets pulled out, and she does not have the strength to call someone.  (We can't get a health care worker to be with her 24/7 and I can't be there 24/7 or else I could lose my job (which we know are hard to come by these days).  Even if I was there and that happened - she was so violently ill, I could hardly keep up with her movements to place a bucket by her head let alone manage a broken or pulled out IV at the same time.  And again she was that bad for a good 4 hours.  :o(

She can't get a pic because she has narrow veins and they can't get the catheter up her arm - so it has to be an iv.  We asked if they would admit her to the hospital after chemo given her last recation and the doctor flat out refuses.  Although he admitted her reaction was the worse he's ever seen.

So ... she's at a rock and a hard place, and is sadly realising she's really got no choice - She's terrifed based on her last reaction, and is afraid to risk the iv situation - not too mention - she was not in need of the hydration the first time she got sick - this was purely chemo reaction based...

They suggested just Carbo - but she thinks why bother since her's is clear cell cancer (rare) and tougher to beat - so would Carbo on it's own really do anything anyway.

The worst thing - she is of the old school thought - that Dr.s are Gods, and while this one is refusing to admit her, she won't seek another opinon because this one is the be all and end all and she would be afraid of losing him or making him angry and him dropping her as a patient.

Sorry - I am at a loss and  just venting.

Hi, Our 26yr old daughter had a Power Port put in for her Chemo and it works well, she has tiny veins that would cause problems otherwise.. So this could be a good option for your Mom! Check into it? they can draw blood from it too so patients get a break from being stuck with needles!

God Bless You and Your Mom,

Lynn