Aa
I want chemo!
Hi Dr. Goodman,
It's me again! I've been fighting a recurrence of OVC and have not responded to any chemo. Dr says cancer is chemo resistant and wants to give me no further treatment -just live my life he says. I've seen two other doctors that say the same thing about chemo but suggest possibility of surgery - a colostomy.
The chemos I've had that haven't worked are: taxol/carbo-weekly taxol-caelyx-gemzar. I also had radiation last summer. I've been bleeding and have tumor 'discharge' for about a year now! I have had a hard time with the chemos but I don't see why I can't have toptecan or one of the many others out there. The doctors all tell me that they won't work - how can they be so sure?
Also when I requested surgery (at the onset of this recurrence) I was told it was inoperable NOW they are telling me no more chemo and have surgery - I can't understand them! Why did they wait for this thing to grow and not respond to chemo? Now they say if I don't have surgery this tumor will soon block me and I'll need a colostomy for 'palliative' reasons. I want to try another chemo for 3 months before I give in to surgery. Am I being realistic?
They also told me that this surgery is no cure, that I will recur within 6-12 months. What happens then since I can't have chemo? They answered that hopefully by then they'll have new treatments. I have been refused on clinical trials and doctors told me not to take Avastin due to high oerforation rate and they won't do surgery on me if I take Avastin. Why?
As you can see I'm still as confused as last time I wrote you - difference now is that I need to make a decision as my last MRI and PET show growth and activity. Tell me what to do!
It's me again! I've been fighting a recurrence of OVC and have not responded to any chemo. Dr says cancer is chemo resistant and wants to give me no further treatment -just live my life he says. I've seen two other doctors that say the same thing about chemo but suggest possibility of surgery - a colostomy.
The chemos I've had that haven't worked are: taxol/carbo-weekly taxol-caelyx-gemzar. I also had radiation last summer. I've been bleeding and have tumor 'discharge' for about a year now! I have had a hard time with the chemos but I don't see why I can't have toptecan or one of the many others out there. The doctors all tell me that they won't work - how can they be so sure?
Also when I requested surgery (at the onset of this recurrence) I was told it was inoperable NOW they are telling me no more chemo and have surgery - I can't understand them! Why did they wait for this thing to grow and not respond to chemo? Now they say if I don't have surgery this tumor will soon block me and I'll need a colostomy for 'palliative' reasons. I want to try another chemo for 3 months before I give in to surgery. Am I being realistic?
They also told me that this surgery is no cure, that I will recur within 6-12 months. What happens then since I can't have chemo? They answered that hopefully by then they'll have new treatments. I have been refused on clinical trials and doctors told me not to take Avastin due to high oerforation rate and they won't do surgery on me if I take Avastin. Why?
As you can see I'm still as confused as last time I wrote you - difference now is that I need to make a decision as my last MRI and PET show growth and activity. Tell me what to do!
MEDICAL PROFESSIONAL
Dear Crickie,
that regimen of topotecan is tolerable. I do not know if it will help but I am glad that your doctor is giving it a try
.
Please let us know how you are doing.
take care
that regimen of topotecan is tolerable. I do not know if it will help but I am glad that your doctor is giving it a try
.
Please let us know how you are doing.
take care
I have seen my chemo doctor and he has decided to give chemo another try.
This time it will be topotecan. He said I'd have one treatment a week for 4 weeks and then a rest period of 2 weeks (I don't quite remember exactly).
Do you think this one will be the one to work and seeing that I had so many problems with chemo in the past - is it tolerable?
Thank you for all your help.
This time it will be topotecan. He said I'd have one treatment a week for 4 weeks and then a rest period of 2 weeks (I don't quite remember exactly).
Do you think this one will be the one to work and seeing that I had so many problems with chemo in the past - is it tolerable?
Thank you for all your help.
MEDICAL PROFESSIONAL
Dear Crickie,
thank you for the additional information.
It does sound like that tumor near the rectum is pretty big. it sure can obstruct the bowel. I agree with a colostomy in the event of an obstruction.
Have you asked your doctor about radiation to that site (I feel like I asked you this before)?
Ask your chemo doctor about something like oral cytoxan and see what he thinks
best wishes
thank you for the additional information.
It does sound like that tumor near the rectum is pretty big. it sure can obstruct the bowel. I agree with a colostomy in the event of an obstruction.
Have you asked your doctor about radiation to that site (I feel like I asked you this before)?
Ask your chemo doctor about something like oral cytoxan and see what he thinks
best wishes
Thanks for your response.
First, I don't have any obstruction now but they forsee one in future. I do have some pain daily but I can function although not as I used to. I get very tired quickly. I had problems while on chemo due to low blood counts -always needed blood transfusions + Neupogen. My chemo doctor says my bone marrow does not recuperate on its own and I had lots of nausea, vomiting and passing out on all chemos. He says for all these reasons he feels that since the chemos don't work he doesn't want to put me through all that for nothing. He believes in 'quality' of life rather than quantity.
The PET in July states 'large hypermetabolic activity situated anteriorly to and abutting the rectum. Lesion measures 5.4 x 3.7 x 3.3 cm, with a maximum SUV of 9.1.'
The MRI in June states 'just superior and to the right of the vaginal cuff, there is a large heterogeneous solid and cystic mass lesion. There is a significant solid enhancing component to this mass. There are also multiple fluid/fluid levels identified. Dependently in some of these cystic structures, there is high signal on T1 fat-sat images and hypointensity on T2 weighted imaging, indicative of hemorrhagic products.' The mass itself measures 4.9 x3.8 x3.8 cm, this abuts the anterolateral right rectum and seems to involve the serosal surface, with displacement of the rectum posterolaterally to the left. There is also a left obturator nodule poorly identified. There is a tiny region of hyperintensity of the liver edge on its serosal surface. It is located adjacent to the bowel loop. Due to the enlargement of the pelvic mass, this may represent a serosal implant or it may be related to the adjacent bowel. Should be re-evaluated on follow-up imaging. Posterior Tarlov cysts are noted at scarum.'
I can have bowel movements and eat as normal as I can. I take Beano for gas as it's painful when I do have to pass gas and more 'tumor stuff' comes out. Can't I try other chemos even if those I took didn't work? Would I need a colostomy? They say there may not be enough 'good' tissue to reattach since I had radiation.
They also say I'll block within 6 months -is that true?
First, I don't have any obstruction now but they forsee one in future. I do have some pain daily but I can function although not as I used to. I get very tired quickly. I had problems while on chemo due to low blood counts -always needed blood transfusions + Neupogen. My chemo doctor says my bone marrow does not recuperate on its own and I had lots of nausea, vomiting and passing out on all chemos. He says for all these reasons he feels that since the chemos don't work he doesn't want to put me through all that for nothing. He believes in 'quality' of life rather than quantity.
The PET in July states 'large hypermetabolic activity situated anteriorly to and abutting the rectum. Lesion measures 5.4 x 3.7 x 3.3 cm, with a maximum SUV of 9.1.'
The MRI in June states 'just superior and to the right of the vaginal cuff, there is a large heterogeneous solid and cystic mass lesion. There is a significant solid enhancing component to this mass. There are also multiple fluid/fluid levels identified. Dependently in some of these cystic structures, there is high signal on T1 fat-sat images and hypointensity on T2 weighted imaging, indicative of hemorrhagic products.' The mass itself measures 4.9 x3.8 x3.8 cm, this abuts the anterolateral right rectum and seems to involve the serosal surface, with displacement of the rectum posterolaterally to the left. There is also a left obturator nodule poorly identified. There is a tiny region of hyperintensity of the liver edge on its serosal surface. It is located adjacent to the bowel loop. Due to the enlargement of the pelvic mass, this may represent a serosal implant or it may be related to the adjacent bowel. Should be re-evaluated on follow-up imaging. Posterior Tarlov cysts are noted at scarum.'
I can have bowel movements and eat as normal as I can. I take Beano for gas as it's painful when I do have to pass gas and more 'tumor stuff' comes out. Can't I try other chemos even if those I took didn't work? Would I need a colostomy? They say there may not be enough 'good' tissue to reattach since I had radiation.
They also say I'll block within 6 months -is that true?
MEDICAL PROFESSIONAL
Dear Crickie,
It sure has been a rough summer for you! Could you please send me the exact wording of the reports of your most recent MRI and PET scans?
As a general rule, chemotherapy will not fix a bowel obstruction. Chemo can slow down the growth of cancer. if you have a cancer that is not being killed by carbo or cisplatin, it is rare for other drugs to be helpful. HOWEVER, having said that, the decision to try other chemotherapy is based on several important factors:
-Performance status: are you getting out of bed?, how disabling is this cancer?, can you eat? Are you having much pain? Are you going to the bathroom?
For people who are functioning fairly well (perf status 0, 1, or 2), it is reasonable to consider other chemo
-do you have a bowel obstruction now? What is your nutritional status?
If you are unable to eat and receive nutrition, chemo is not a good idea. Some of my patients will go on to parenteral (IV) nutrition (TPN - total parenteral nutrition). This a very controversial but I do do it with my patients who otherwise have a good performance status.
-do you have any other medical conditions that would make chemo dangerous? severe cardiac disease, active infection, clotting or bleeding problems.
As far as surgery goes, if it is safe to do a colostomy and that would allow you to eat, have bowel movements, and receive other therapy, then you should do it. I would not suggest trying chemo first if you have a surgical problem that can be alleviated.
avastin has been helpful for some people. people need to wait 6 weeks after surgery to receive avastin because it will interfere with wound healing.
I hope this is helpful for you. please keep in touch
It sure has been a rough summer for you! Could you please send me the exact wording of the reports of your most recent MRI and PET scans?
As a general rule, chemotherapy will not fix a bowel obstruction. Chemo can slow down the growth of cancer. if you have a cancer that is not being killed by carbo or cisplatin, it is rare for other drugs to be helpful. HOWEVER, having said that, the decision to try other chemotherapy is based on several important factors:
-Performance status: are you getting out of bed?, how disabling is this cancer?, can you eat? Are you having much pain? Are you going to the bathroom?
For people who are functioning fairly well (perf status 0, 1, or 2), it is reasonable to consider other chemo
-do you have a bowel obstruction now? What is your nutritional status?
If you are unable to eat and receive nutrition, chemo is not a good idea. Some of my patients will go on to parenteral (IV) nutrition (TPN - total parenteral nutrition). This a very controversial but I do do it with my patients who otherwise have a good performance status.
-do you have any other medical conditions that would make chemo dangerous? severe cardiac disease, active infection, clotting or bleeding problems.
As far as surgery goes, if it is safe to do a colostomy and that would allow you to eat, have bowel movements, and receive other therapy, then you should do it. I would not suggest trying chemo first if you have a surgical problem that can be alleviated.
avastin has been helpful for some people. people need to wait 6 weeks after surgery to receive avastin because it will interfere with wound healing.
I hope this is helpful for you. please keep in touch
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