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Is Caelyx a cure and is patupilone a safe trial
I have an undifferentiated and agressive cancer cells. It attacked my left ovary which was taken out together with a 20cm mass. My right ovary had a cyst which was also taken out but was not cancerous. I had adjuvant chemotherapy of taxol/carboplatin every 3rd week 6 sessions to mop up any stray cells when the mass was pulled off the back of my womb. I am 38. My CA125 levels were excellent and a scan a month later was fine. Although I noticed a nodule at the end of my surgery scar 2weeks after surgery. tests ie CT scans, bloodtests all said things were ok.However I was always worried about it. 2 months later after chemo, still worried, my consultant removed the nodule. It came back cancerous and CT scans showed lots of nodules in my abdomen stuck on my bowels. Therefore platinum chemo did not work. I have been offered caelyx or a patupilone trial phase III. Will I be propped up all my life on chemo? is the trial safe? is caelyx sucessful as a second line chemo drug? has there been cures remissions or whatever? Have you heard of a case similar to mine which you can share with me? What are my chances of conceiving ? Thankyou.
First off I am sorry you have had to join our club..Caelyx also known as doxil in the states is a back up chemo used for people who have recurring ovarian cancer.. It is almost always used as a second line.. Yes there can be remissions on caelyx but since yours has returned you will not have a cure... a remission yes a cure no.. Be careful with that chemo...have them ice your hands and feet while being infused..
Soreness and redness of the palms of the hands and soles of the feet If you are being treated with Caelyx, you may develop red palms and soles of the feet, sometimes referred to as palmar plantar, or hand and foot syndrome. This effect can begin after two or three cycles of treatment, but is temporary. It will usually begin to improve within 1–2 weeks after the treatment is finished. You may be prescribed vitamin B6 (pyridoxine), which can help to reduce this. It can also help to keep your hands and feet cool and to avoid tight fitting clothing, such as socks, shoes and gloves.
As far as patupilone trial phase III it works in much the same way as the taxane drugs.. the choice will be yours...
You never said what you were staged... and that might help others on this forum to offer advice.. remember we are not experts but we are in the middle of all of this..
I wish you much luck.. Ronni
Soreness and redness of the palms of the hands and soles of the feet If you are being treated with Caelyx, you may develop red palms and soles of the feet, sometimes referred to as palmar plantar, or hand and foot syndrome. This effect can begin after two or three cycles of treatment, but is temporary. It will usually begin to improve within 1–2 weeks after the treatment is finished. You may be prescribed vitamin B6 (pyridoxine), which can help to reduce this. It can also help to keep your hands and feet cool and to avoid tight fitting clothing, such as socks, shoes and gloves.
As far as patupilone trial phase III it works in much the same way as the taxane drugs.. the choice will be yours...
You never said what you were staged... and that might help others on this forum to offer advice.. remember we are not experts but we are in the middle of all of this..
I wish you much luck.. Ronni
I answered another of your questions regarding my experience with patupilone. Please read that.
Also, look at using different supportive therapies - massage, reiki, exercise - along with dietary changes and supplemental dietary support. Allow yourself to grieve but also decide how you want to fight this disease. I was dxd with stage 3 epitheleal in July 2007. My attitude is that this will surely kill me, but I can do things while I live to help me live longer. Good luck with your future. This is a very supportive group, keep in touch.
Maggie
Also, look at using different supportive therapies - massage, reiki, exercise - along with dietary changes and supplemental dietary support. Allow yourself to grieve but also decide how you want to fight this disease. I was dxd with stage 3 epitheleal in July 2007. My attitude is that this will surely kill me, but I can do things while I live to help me live longer. Good luck with your future. This is a very supportive group, keep in touch.
Maggie
Hi Ronnie and Maggie,
Just panicked and wrote on this site! getting to know my way around it. I am stage II. I've read through this forum now. Its a mine of information. i also wrote on alanpvegas thread earlier. today I don't feel like going through the chemo but tomorrow is another day so maybe I'll feel different. Its funny but when I was first diagnosed I felt the same but went through the chemo and put all my faith in it. I had reiki, reflexology, vitamins, juicing, vegetarian,dairy free diet. But it all fell by the wayside except I'm still a vegetarian, as I naively thought they diagnosed me wrong and the chemo they offered me would kill the cancer cells if I had any!
Anyone who reads this thread, take note. Supportive therapies are very important. and stress free even more. Don't ignore the cancer like I did. Nip it in the bud.
I'll definetly keep in touch as I sign the papers next wednesday.
My heart reaches out to all of you and your families.
This is so hard to deal with. second time round, I feel stronger most days but my family is falling apart.
Just panicked and wrote on this site! getting to know my way around it. I am stage II. I've read through this forum now. Its a mine of information. i also wrote on alanpvegas thread earlier. today I don't feel like going through the chemo but tomorrow is another day so maybe I'll feel different. Its funny but when I was first diagnosed I felt the same but went through the chemo and put all my faith in it. I had reiki, reflexology, vitamins, juicing, vegetarian,dairy free diet. But it all fell by the wayside except I'm still a vegetarian, as I naively thought they diagnosed me wrong and the chemo they offered me would kill the cancer cells if I had any!
Anyone who reads this thread, take note. Supportive therapies are very important. and stress free even more. Don't ignore the cancer like I did. Nip it in the bud.
I'll definetly keep in touch as I sign the papers next wednesday.
My heart reaches out to all of you and your families.
This is so hard to deal with. second time round, I feel stronger most days but my family is falling apart.
Hello again,
I originally responded to the other thread but one of the ladies has kindly requested we not use that thread as it is an old posting and as such, one of the ladies that was posting on it has since passed over. So, in respect for her wishes I'm posting here.
I noted your comment, quote " aghhhh! I really don't want to take any more chemo. my hair is growing back and looking real chic and I don't want to lose it".
If you decide to go ahead with the Patupilone trial, you will Not lose your hair. It is not one of the side affects associated with this drug. When I commenced on Patupilone, I was completely bald with no eyelash's or eyebrows. As I said before, i've been on it for 42 weeks now and my hair started growing almost immediately, slowly but growing, I now have a full set of eyebrows and eyelash's and a head full of thick hair.
As far as not wanting to go on chemo because they can't "Guarantee" you will be cured, that is a choice only you can make but if the deciding factor for you is more about your hair and how you look, please do consider the trial.
There are of course other side affects associated with taking the drug as Maggie pointed out in the other post. But again, you don't know for sure if you will even experience the same ones Maggie has. I for one, haven't had any nausea or diarrhea, I have however had servere constipation. (not sure which one is worse)!
I hope this helps you make a decision, and what ever you decide, I wish only the very best outcome for you.
Kind regards.... Janet
I originally responded to the other thread but one of the ladies has kindly requested we not use that thread as it is an old posting and as such, one of the ladies that was posting on it has since passed over. So, in respect for her wishes I'm posting here.
I noted your comment, quote " aghhhh! I really don't want to take any more chemo. my hair is growing back and looking real chic and I don't want to lose it".
If you decide to go ahead with the Patupilone trial, you will Not lose your hair. It is not one of the side affects associated with this drug. When I commenced on Patupilone, I was completely bald with no eyelash's or eyebrows. As I said before, i've been on it for 42 weeks now and my hair started growing almost immediately, slowly but growing, I now have a full set of eyebrows and eyelash's and a head full of thick hair.
As far as not wanting to go on chemo because they can't "Guarantee" you will be cured, that is a choice only you can make but if the deciding factor for you is more about your hair and how you look, please do consider the trial.
There are of course other side affects associated with taking the drug as Maggie pointed out in the other post. But again, you don't know for sure if you will even experience the same ones Maggie has. I for one, haven't had any nausea or diarrhea, I have however had servere constipation. (not sure which one is worse)!
I hope this helps you make a decision, and what ever you decide, I wish only the very best outcome for you.
Kind regards.... Janet
Patupilone is, from what I've seen, a fairly 'easy' chemo...like you said not much side effects beyond diarhhea which can be managed. However it's effectiveness is yet to be determined (thus this phase, 3, of the clinical trial).
Caelyx (aka Doxil) is pretty standard second line chemo...you won't see effects right away, in-fact ca-125 will rise but that's commonplace. It's best, in my opinion, when combined with other drugs such as 5FU or Eloxatin...either of those two added have shown dramatic increases in either survival times or regression of the cancer compared to Doxil (Caelyx) alone. Doxil/Caelyx had 'doxorubicin' as it's major component, so it can possibly damage the heart...look into CoQ10 (I have an article on my site) that you can discuss with your doctor about...it's an OTC supplement.
I do not want to sound negative, but anything after first line chemo with platinum agents is typically referred to as 'salvage' chemotherapy...you are not going to be able (in pretty much all cases) to cure the disease...but if your body responds well, you can manage the cancer...and that's the current goal of oncology today especially in advanced cancers (e.g. most anything after stage 1). So, yes, it is possible to be on chemo for quite a while...the goal is to get you into 'remission' so you can be off chemo for however long it takes until the cancer decides to spread again...then you can go back on to get into remission again...this is the goal.
Now, just because you failed (I hate that word) first line platinum chemo, it does not mean you are 'platinum resistant' as commonly known...weekly platinum chemo (carbo, etc.) works just fine in quite a few plat resistant patients as well as going on the Phenoxidol trial which chemosensitizes platinum resistant cancer (it uses Genestein...article also on my site).
Best of success to you...this is a great community with ladies full of experience and advice on this!
Caelyx (aka Doxil) is pretty standard second line chemo...you won't see effects right away, in-fact ca-125 will rise but that's commonplace. It's best, in my opinion, when combined with other drugs such as 5FU or Eloxatin...either of those two added have shown dramatic increases in either survival times or regression of the cancer compared to Doxil (Caelyx) alone. Doxil/Caelyx had 'doxorubicin' as it's major component, so it can possibly damage the heart...look into CoQ10 (I have an article on my site) that you can discuss with your doctor about...it's an OTC supplement.
I do not want to sound negative, but anything after first line chemo with platinum agents is typically referred to as 'salvage' chemotherapy...you are not going to be able (in pretty much all cases) to cure the disease...but if your body responds well, you can manage the cancer...and that's the current goal of oncology today especially in advanced cancers (e.g. most anything after stage 1). So, yes, it is possible to be on chemo for quite a while...the goal is to get you into 'remission' so you can be off chemo for however long it takes until the cancer decides to spread again...then you can go back on to get into remission again...this is the goal.
Now, just because you failed (I hate that word) first line platinum chemo, it does not mean you are 'platinum resistant' as commonly known...weekly platinum chemo (carbo, etc.) works just fine in quite a few plat resistant patients as well as going on the Phenoxidol trial which chemosensitizes platinum resistant cancer (it uses Genestein...article also on my site).
Best of success to you...this is a great community with ladies full of experience and advice on this!
hi there,
i spoke my my onc and they said that here in the uk they do not combine drugs when its second,third or whatever line!
yesterday they staged me 4 and i am in pain. i have lots of really large and small nodules of cancer in my abdomen stuck to my bowels. they are causing my bowel to get sticky and twisted, therefore i throw up and in pain especially at night.
my cancer is aggressive and undifferentiated. I am stalling my onc by asking for a second opinion which is next week. hopefully by then i will make a decision whether to go alternative+complimentary or chemo+alternative+complimentary.
I have just ordered food grade hydrogen proxide to stop the spread of cancer.
i spoke my my onc and they said that here in the uk they do not combine drugs when its second,third or whatever line!
yesterday they staged me 4 and i am in pain. i have lots of really large and small nodules of cancer in my abdomen stuck to my bowels. they are causing my bowel to get sticky and twisted, therefore i throw up and in pain especially at night.
my cancer is aggressive and undifferentiated. I am stalling my onc by asking for a second opinion which is next week. hopefully by then i will make a decision whether to go alternative+complimentary or chemo+alternative+complimentary.
I have just ordered food grade hydrogen proxide to stop the spread of cancer.
Hmmmm...I'm not sure that exactly true about them not doing double agents post first line chemo. I'm fairly sure I've heard they do...at least I know they do in research and trials over there. Are you stuck with this one oncologist?
i have asked 4 a second opinion. its next friday at the royal marsden in london where i'll b seeing a top onc prof gore. i'll c where that takes me.
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