Hi my lovely friends, well I had my second opinion with the prof , as he said it was hard for him to advice as he did not have all my medical history, but going on what he knows and I'm also feeling a lot better then when I last saw my oncologist , becourse I've been off all treatment and in palliative care, I'm feeling a lot better then I have felt in a long time, He has suggested Taxol as I have not had it in some time over 3 years ago.
He is going to write to my oncologist and I will see her in 2 weeks I'm not sure how she will take the advice as she had told me no more options.
The hospital that the prof is at is up to a 3 hour drive he feels the would be to much every week
The funny thing is I thought that given a option would make me feel better but as I've been feeling so good lately but for a lump and small pain in my side. I wonder if quality of life is better and do i won't to go back on treatment, i have 2 weeks to make up my mind that is if Amanda my oncologist agrees, I did have a reaction to Taxol first line treatment and had to have it over a long infusion.
Thank you for caring and I wishes you all the best in this journey..
Take care all Lorraine xx💙💙
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I think I understand how you feel. The good days, when not feeling exhausted, no stay in hospital with things pumped into your body, no side effects - it all sounds too good to give up. See what your oncologist says. It's good that you have these 2 weeks to think; you will arrive at your own conclusion and whatever it will be, i believe will be right decision for you. You have enough experience with treatments by now you know what's best for you.
I've got a couple of questions for you, if you don't mind. Has your cancer spread to other areas of your body or is is still contained in your tummy? Has it affected your bowels? Are all your physiological functions ok or do you need a stoma bag etc. Also, I assume that your tummy port has been removed and is not bothering you anymore.
By the way, I am happy to see my CA125 finally take a turn in the positive direction (about half way through my second line treatment). Maybe it's Avastin that has done it or maybe it would anyway. So perhaps I am still responding to platinum. Avastin affected my voice somewhat; apparently it is one of its side effects.
Hi Grace. Thank you for your reply, Ive been very lucky in my treatments some chemo were hard but I think becourse I've been on chemo most of the last 4 years with only small breaks it has kept a lot of problem down, like has been contained in the same area as diagnose it's only now gone to my adrenal gland,as I have have not had treatment now for a couple of month.
I always have trouble with constipation just have to keep on top of it as best as possible.
As I said I've been lucky no stoma so far, have been having a pain in my side and found a lump there. my 125 is now 2000.
As I'm not on treatment any more I will need to tell my GP or Palliative nurse.
So glad to read your 125 is going down hope it continues ..take care Lorraine xx
Hi Lorraine, so pleased that you are feeling so much better off treatment. You are very experienced in all this . I wish you all the best , whatever you decide to do . Good luck ,
Hi Sheila, thank you for the reply and yes it does feel go to be off treatment and feeling better in a long time I still have some fatigue,I need to decide if to go back on the roller coaster, and how long I can feel better with out treatment.
I'm waiting to read you have rang the bell..Take care love Lorraine xx💙💙
Hi Lorraine , I am sorry that getting the second opinion hasn’t “cleared your head” in making your decision. I know that you will make the right decision for you whatever that might be .Keep us posted my lovely xJulia x
Hi Julia, It i funny I thought that it would give me peace of mind but feeling so much better then i have for a long time it's hard to decide, I have 2 weeks till I see my oncologist she may say no as i did have a bad reaction to it last time, I still had the treatment only over a long infusion time. how are you hope the Carbo/ Caelyx is giving you good results..Take care of yourself Lorraine xx💙💙
Hi , My friends wife who has OC has reacted to something at each of her three lines, as you say they either give her over a longer length of time or reduce dosage or increase pre meds so I am sure there is a way you can have the Taxol , here’s hoping if that’s what you decide on and your oncologist agrees . My CA125 was halved after first infusion and I get my mid way scan result next week so getting very snappy with all those around me at the moment and they have no idea why I am tetchy , only us girls know the trauma of the week leading up to scan results x Keep well my lovely xxJuliax
Hello Lorraine Lovely to hear that you are having a nice break off of treatment and feeling well. I am sorry that your second opinion has not evoked the answers you had hoped for. But taking two weeks to reflect on your options is probably just what you need at the moment, have lots of "me time" and treats, you deserve them. Take lots of care Lyn x
Hi Lyn , Thank for your reply,yes I have 2 weeks to make up my mind ,It just feels so go to be of treatment, but this would only last for I don't know how long my 125 is now 2000,
I read that your surgery went well, that is great, now just get your strength up and enjoy..Take care Lorraine xx
hi Lorraine,you had good response all through? so just go for it again,having a break is good feeling better is good ,you sound strong so best have a shot why your well,good luck ,cold here! xx
Good to have an option but always difficult to make a decision especially as your oncologist previously said no more options. 2 weeks to think and talk with family. A hard 2 weeks especially as you feel well now.
I found weekly Taxol very tolerable although I didn’t have a reaction to it first line. I suppose, if your oncologist agrees it might be a good choice for you, you could always start the treatment and abandon it you find the side effects are too much. Your CA-125 is monitored every month so you should have a good idea if it’s working or not. My treatment was for six months, every week for three weeks and one off. I was left with two lymph nodes from many and only slow growth for another six months.
Hi, Thank you for your reply, I have read some post from the ladies who have had good result form Taxol, so it give me some encouragement my 125 is now 2000 so will have to decided one way or the other.
Glad to read your 125 is going in the right direction. take care Lorraine x
Hi Lorraine. Just wanted to let you know that I’m thinking of you as you decide what to do about further treatment. I hope all your previous experience will help you make the right decision for you. All the very best. Jo xx
Hi Jo, thank you for thinking of me, I must admit it's been good off treatment like you the fatigue, was getting to me but I'm still here 4 years on . when I was diagnosed I was told I would not see the year out.
Having all the facts will help you be at ease once you've made the decision because you'll know it was the right one for you. Thinking of you as you wrestle to find the right decision for you. 💐💐 Xxx
Hi Sandra, thank you for replying , I am wrestling with it at the moment but in my heart I won't to be around for my family , I need to talk to my oncologist again as I've not see her in a couple of months and my 125 is now 2000.
I hope you your team have a good treatment plain in place for you let us know.
Such a hard decision to have to make. As January 2016 says, if you start then you can stop if it’s not working for you, but only you know if you want to put yourself through it again.
When I started my current lot of chemo, I really found it hard to reconcile myself to the fact that it made me feel ill, when, even though I was recurring, I felt great.
Hi Ali ,Thank you for replying and yes I could start and always stop it it not working my 125 is up now to 2000 I've not had any treatment for a couple of months now.
So will need to make up my mind .
I hope your Carbo/Caelyx is still giving you good results take care Lorraine xx
I wish you the very best with this important decision. I hope you can maintain your good quality of life whichever option you choose. You have so much support here. Xoxo
Hi Love, Thank you for your best wishes and yes it's quality of life is important in my heart I won't to be around for as long as possible for my family.
It's been 4 years mostly on chemo and I have notice it's been hard on my family .
How are you going hope you are ok..take care Lorraine xx
So pleased that you have an option after getting the news from your oncologist. Yes, tough decisions to be made and only you and your family between you can decide. My penny's worth is that whatever I have endured over the last year, and some of it has been horrendous, it eventually fades into the unknown and is forgotten. I'm not at the stage yet to say stop but then I did promise my children that I would never give up, but who is to know? That day may come in the not too distant future. I did suggest to my oncologist that if this Hycamtin doesn't do anything then I'm willing to try Taxol again weekly, despite what happened last time. I do think it was the one thing that worked for me. Shame it was just the one shot. I think that weekly would be better but of course I don't have to travel 3 hours there and 3 hours back again. That's a tough one.
I'm sure you'll decide what is best for you and I wish you well, as you know. I've always thought of you as a fighter and I wouldn't think any less of you if you decide not to go ahead with any more treatment. Thought I would say that. Much love xxxxxx
HI Kryssy, Thank you love you always seem to put it in to perspective I do won't to be around for my family, but I also see the toll it's having on them, I see my oncologist on 2 weeks so will see what she says ,
Just take your time to decide. We're all here for you no matter what. I'm ok right now. Chemo in yesterday and no side effects except ferratine levels rising but doc says that's normal for what I'm having. Hope he's right. Bowel happy and getting close to stopping the pills. I think one has steroids in as having problems sleeping. Getting my whiplash seen to by a crazy french kinesiologist who doesn't stop talking but I'll have to tell her to shut up as it's supposed to be relaxing. I come out more stressed than I go in. We've found a lovely place to stay by the coast for a few days in December in between chemo to celebrate our wedding anniversary and my 70th birthday so really looking forward to that. Children giving me money instead of things for my birthday. I don't need things anymore. Hoping our weather continues, 28 degrees still, so I can tidy the garden a bit for winter now I have some energy back. So, without some sort of disaster, which is always lurking for me, I hope to get to the end of the year as my oncologist promised. Got my PET on 7th December and results on the 11th. Good or bad news I'll take it.
Big love to you and will be thinking of you. xxxxxx
Hi Kressy. Sound like your your oncologist is keeping a eye on you that's good,
a few day at the coast sound good also, we have a house up the coast from the mountains but don't get there as much as we use to, next week we will go up for a couple days encase i do start treatment again.
I hope you have the best time for your anniversary and of course your birthday.
Hope all the results are good as you said you will take it good or bad, that is the sort of person you are positive and full of life,
Thank you again for being there for me when I need advice and especially encouragement .lots of love my friend take care Lorraine xx💙💙
Thinking of you. Do trust what feels right for you and after you have talked with your oncologist. Even get a 3rd opinion if that is good for you? It's so hard to make decisions when we don't know the outcome! Big hugs from Northern Beaches.
Hi Lorraine, it's so good to know you're feeling so much better. It's a very difficult decision you've got to make but there have been so many along the way.
Whatever you decide I know it will be the right thing for you. Hugs, Zena xx
Hi Zenaj, Thank you for your reply arfter reading some of the replys from our ladies on Taxol this is helping me to decide, I will need to talk to my oncologist as she was the one to say no more options.
Hope you are ok take care and enjoy Freddie ,hugs Lorraine xx
I'm glad you have these two weeks of looking after yourself with no treatment to disturb your feel good factor. However, since you've been through so many lines and to us you are highly experienced in all this, I'm sure you can come to your own decision and see if you'd rather accept a new combination of chemo if it offers you the slightest of benefits. Listen to your heart, but also heed the new oncologist's advice. Take care,
Hi Maryanne, Yes I have had a lot of chemo in the last 4 years, I'm feeling so much better then I have in a long time, I've been off treatment now for a couple of months but my 125 is now 2000 so will need to decide.
How are you hope ? you are ok take care Lorraine xx
That must have been tremendously tough 4 year journey. It's good that you can be seen by a different oncologist maybe the chemo he offers will keep you going steadily and without much disturbance.
I'm doing well so far...have regular checkups every 3/4 months, but I dread to think of having to go through further treatment as I know from reading this blog that it's far from easy. Keep strong Lorraine.
I am glad you have a break with no treatments & sides, just to breathe and clear your head and actually feel good. Take the time to process the options and opinions - you will come to the decision that is right for you. Your experience and knowledge share is such a gift. You are in my thoughts and I send hugs.... Valerie
Hi Valerie, Thank you love for your reply', I have been on here now for near 4 years and without the advice and encouragement from all you ladies it would have been a lot harder.I value the advice I get so much.
It's great to hear that you are feeling a bit on the up now, Lorraine. Also to know you have a choice. Although I sympathize with you, worrying about the reaction of your oncologist. Still... it's your life on the line, not hers. I would be truly surprised if she didn't support at least a serious attempt at Taxol.
In two weeks you will hopefully feel even stronger, and maybe that tips the scales in favour of giving the treatment a try. The good thing about being an adult is that we can stop treatment any time or ask for adjustments if needed. Still.. the choice is yours and you don't need to go the chemo route if you don't think it might overall provide you with a benefit. You are the only one who can tell what feels right for you, at the time. Trust yourself.
Hope your body keeps being a team player. Hugs. Maus
Hi Maus. I am feeling so much better at the moment I've been of all treatment for a couple of months now and the palliative care nurse comes to the house, I don't have much in the way of pain so it's been good. my 125 is now 2000 so I will have to decide about treatment, as you said It's 2 weeks before I need to decide and i should feel stronger .
As you get stronger and feeling better every day, you'll find the strength to make the right decision for yourself. Best wishes to you and your family. Big big hug.
Hi Nacy, Thank you for your reply, yes I;m feeling so much better then I have for a long time and in two weeks will hopefully feel stronger to make that right decision.
Hope you are ok take care of yourself Lorraine xx💙💙
Lorraine, it's great to hear you are feeling pretty good. It is totally your decision to make 're new treatment, but if there is a chance this one might do some magic it may be worth it. Sending best wishes from the West 🌹
Thank you for your best wishes I am feeling a lot better then I have for a long time this should help on treatment . I'm just enjoying not having chemo .
Hi Lorraine ... I've been thinking about you & wondering how you were going and if you had any success with a contact? It's good to hear you've been feeling much better - long may it continue. Best wishes, love Ruth xx
Hi Ruth, thank you for thinking of me, yes I have found a contact and started the oils to day,I've been of treatment for a couple months now and feeling a lot better but my 125 is now 2000 so will need to decide about treatment,
Good to hear! I sincerely hope everything works out for the best - keep feeling much better. I know how difficult it must be to make a decision re treatment especially when you're feeling better. I'm ok thanks Lorraine - got my blood checkup in a couple of weeks so starting to feel a bit anxious as per normal Take care xxx
Hi Lorraine. Good to hear you are feeling better. I cannot offer any advice on the treatment as I have no experience of chemo. I can only offer my best wishes and positive thoughts. Xxx
So pleased to hear you are feeling a bit better I found Taxol weekly doable without too many side effects and it brought my levels down Was just lucky that I can take the Oliparib now and don’t have to go for chemo I’m sure you will come to the right decision for you and good luck with whatever you decide ❤️
Hi Cathy, Yes I am feeling better and arfter the post from are ladies who have had taxol it's a bit more positive.I did have it before st line treatment and had a reaction to it, i finished the course with a long infusion, so I'm not sure my oncologist is going to agree i see her in 2 weeks,
How are you hope you are ok Take acre Lorraine xx💙💙
Hi Lorraine--it was so nice to read that you are feeling better and also nice to read there is an option as told by an objective consultation. I think it's good you may have this option (as you say, with your oncologist's approval) and I hope this time you have just had palliative care has given your body time to heal and the physical strength to do the infusions should you choose to. I think if you can tolerate it, let your onc know you are OK with the infusion being longer, taking longer--if slower means being able to tolerate it. I would guess you could just do two then take a ca125 (or your best markers) to see if its working so you are not necessarily committing to them all until you know. If you are concerned about your onc saying yes, she might go along with that. But of course, this is your decision first and foremost and as you say, you feel torn..or not sure based on how good you feel. I have read you guide people for second opinions and sounds like this time your advice may have worked well for you too. Wishing you luck in this time when you need to decide. You can see all the love and support you have here, including me. oxoxox
i, This sit with all the amazing ladies has been my rock for the last 4 years I come on here most days and when i need that support, it's always here so thank you for yours.
Yes I'm feeling better and each day I am trying to get my head i the right place to make the decision . I hope you are ok take care my friend Lorraine xx
Hi Lorraine, so happy to hear that you are feeling better! I just wanted to let you know that I’m thinking about you and know that you will make the best decision regarding your treatment. You always show everyone on this forum so much kindness and support — I hope you are feeling that coming your way now, and always!
Hi Gina, Thank you for you kind reply and yes I always feel the support from you ladies, this site have been a big part of my journey in the last 4 years, we all try and encourage each other. I am feeling a lot better this will help me decide.
I hope your treatment is giving you good results , take care my friend Lorraine xx
I think in a similar situation I would have been surprised and annoyed to have driven 3 hours to be told to try Taxol when my own oncologist basically wrote me off. I don't Taxol is thinking outside the box.
From the Clearity Foundation website the stats show that Taxol is far for effective when combined with Avastin. Here are a couple of links:
This link will let you see the Taxol responses including in combination with Avastin.
Hi, Thank you for the information I will ask my oncologist about Avastin with Taxol .
I did feel like he was not interested in treating me, when I said that i would travel down to see him he just replied that it would be to much for me and he would write a letter to my oncologist with his recommendation but that does not mean she has to put me back on Treatment.
Thank you again for your concern hope you are ok ..take care Lorraine xx
A while ago I corresponded with Dr. David L. Morris in Australia. It concerned my research into ablation therapy which I am a big proponent of. His response to me is below. Sounds like you can send in your material to him. Can't hurt.
We do treat a lot of ovarian cancers. If you a send a brief medical history (previous operation notes, the histopathology from those operations etc.) and a scan on a CD to be reviewed we will contact you. You can send the CD to the address below.
Yours sincerely,
Professor David L. Morris
Department of Surgery
St George Public Hospital & UNSW
Level 3, Pitney Building, Short Street, Kogarah NSW 2217
Also found this. It is very uplifting and in many ways incredible. Different cancer but speaking about Dr. Morris. There is some material about him online and you can google it. I would send him an email. He responded to me via email.
Hi, Thank you so much for sending me all this information, I have taken it all down and will look into Dr Morris, St George hospital is on the south coast of NSW but it would be interesting to hear what he thinks in the way of treatment.
Hello dear Lorraine. You have such a soft spot in my heart....you are so generous with your caring. Anyway....far be it from me to give advice, but just a thought.....do you have access to any integrative oncologists where you live? (Not alternative, functional, or complementary....but integrative?) My journey is similar to yours in that the minute I go off treatment it's back on the march in my body again. I recurred 4 months after frontline. I'm about to start metronomic (low dose) chemo of Avastin plus Topetocan plus IV Vitamin C with a chaser of pill etoposide through an integrative oncologist near Seattle. My current onc for 1.5 years wants to stay the course of Doxil/Avastin but after 3 rounds it's not working, and I have developed a pleural effusion to boot. Stay the course? No....I can do better, or at least I'm going to try. It's painful to leave him, but if nothing changes....nothing changes. Just know I'm thinking of you and glad you are getting a reprieve and feeling better. I, too, have twin grandchildren, but they are only 4 1/2. What a delight, and my daughter is pregnant and I'm determined to be a proper grandmother to this new baby!
Hi Kat, Thank you for your kind words I have been on here now for near 4 years and with out the advice and especially the encouragement from you ladies,it would have been a lot harder, we have our families I know but there are times when you need to correspond with someone who understands what you are going through.
This site and all you amazing ladies have been a very big part of my journey.I like to give back some of that encouragement especially the new ladies as it is a scary time and they need to know there is support for them.
I have not head about integrative oncologist, like you I've been with my oncologist for the whole 4 years and she have kept me alive, so when she told me no more options I did find it hard to get my head in the right place,I went for the second opinion myself so I'll see what she says when I see her next week, I hope your treatment gives you good results.
Grandchildren are little treasures my are all growen up the twins are 18 and Ryan is 18 then Sam 13, I have to give thanks that I have seen them grow into lovely people.
Nice you have a new grandchild to look forward to..Take care my friend Lorraine xx
I’m glad the appointment was fruitful, even if it has given you more to think about.
I don’t know how the health system in Australia works, but ask about Abraxane as an alternative to Paclitaxel. I was allergic to paclitaxel too, but haven’t had any issues with abraxane at all (although it isn’t licensed for OC in the UK).
Hi Vicki ,Thank you for your reply and I will ask about Abraxane, I hope the taxol is continuing to give you good result..Take care of yourself Lorraine xx
I am on weekly taxol and have had 10 infusions and finding it tolerable and quality of life really good. I have also done doxil/caelyx which I found harder. I know you have done a lot of caelyx and to be honest I don’t know how you coped. It did get me stable but found this regime the hardest. I am similar to you I think in that my disease dosent like to sleep for long.
I do not comment much on this site but felt I had to tell you I am thinking of you and feel your pain in deciding what to do. Get yourself stronger physically and mentally ready for the next round with this disease. You have an option remember which is amazing focus on that. Best wishes Maureen x
Hi Maureen, Thank you so much for your reply,It's good to read that other ladies are on weekly Taxol it is helping me to decided, Caelyx was the best chemo for me so when it stop I was surprised but the prof told me and my oncologist that the cancer becomes resistant to that treatment.
I hope you are ok take care of yourself and all my best wishes for your treatment Lorraine xx💙💙
Hi Lorraine, glad you're feeling better! At the start of my treatment in February this year I had carbo/taxol, not only did it not work but I didn't feel too good, but with you, see how you go with the taxol, and also be encouraged that new discoveries and developments are occurring all the time! Take care, xxxDawn!🌻🐞🌻🌺
Hi dawn, Thank you for your reply, yes I am feeling better which makes it hard to decide,to go back on the treatments but feeling good should help me decide the right path for me.
It is wonderful to feel well and that also I think gives us a clear brain to consider the pluses and minuses of treatment. I wish you well and hope that you come to a decision that's best for you and your family.
Hi, Thank you for your lovely wishes , It is good feeling better then I have in a long time,and yes it should help in doing the best thing for me,also I need to take in the effect this last 4 years has been on my Family as you know it hard on them also.
How are you going I hope you have found this site a comfort to you we will always be here if you need encouragement or advice from some old heads😀..Take care love Lorraine xx
Currently at end of second line chemo and in hospital with infection. I have found this site to be invaluable in terms of all of you ladies who have given me the strength to move forward and try to mentally cope with this surreal way of living. You are all a big comfort to me.
Good luck with whatever you choose. I went for quality of life and nothing now would drag me back into the side effects cycle of chemo. I can’t chase the miserable aching, sickness etc for a couple of months of time (maybe). Apart from my reduced mobility which is the lymphedema and hernia I feel ok.
It’s a tough call when an oncologist puts options on the table as they did with me and Letrozole.
Hi La, It is a tough call and when I originally read your post about no more treatment I thought it must have been a very hard decision to make as it's only humane to won't to survive.
I do understand more now when my oncologist first told me no more options I was in a bad way for a few weeks, then as I started to feel better I accepted her decision.
My family won't me to try a second opinion and as I've told ladies go for the second opinion I took my own advice, now it's hard to decide like you is it worth a couple of months extra, I hope that if I do not go on treatment I show the same class you have shown and some of our other beautiful ladies who are not with us.
My family wanted me to give it another go. I was offered weekly Taxol or Caelyx. I’m still happy with my choice, after that was January and I don’t believe Id be here now if I’d taken that route. That is of course just my opinion
It’s so hard when there are choices. I probably would have stayed with the Avastin if I could’ve afforded it. Although I’m a few months down the road from that now
You’ve been such a support to me on this journey and I really hope I can return the favour. I’m quite good at mind maps and brain storming if you need me
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