Hi all. Undergoing intensive chemo, 6 rounds of carboplatin/taxol/avastin every 3 weeks. Hopefully op to remove everything I don't need. Then a maintenance phase of 12 rounds just of Avastin, every 3 weeks.
2 rounds done, feeling good and positive. Started to loose my hair so shaved the lot if for Just Giving to raise money for Macmillan. I've recruited 20 others to Brave The Shave with me and raised £5k so far! Feels good to do something and give a little back. ❤
Fabulous photo. You look really cool. Mine is just beginning to grow (my picture is old) and I think I will keep mine super short. Hope all goes well for you 😘😘
Thanks Chris. Love the colour of your hair! Mine was boob length...will stay short too I think once it grows back. Much easier ❤ x
Welcome. That's an amazing achievement to raise so much! Hope you're not experiencing many side effects from the chemo regime but here is the right place to ask any questions you might have.
I am so lucky to have had so many people join in .... it's because of them so much money has been raised.
I've had tingly numb finger tips, they reduced my taxol slightly for round 2 but still feels the same (Will mention next visit to oncologist). Few aches and pains, tiredness and restless sleep but nothing I cannot handle.
All standard and normal whixh is what you want to hear.
Beth ❤
Hello Beth, I had a 20% taxol reduction for cycles 5 and 6. It didn't reduce the intensity but it didn't get any worse. Sometime after I finished chemo, the tingling slowly started to fade but never completely went away, especially the numbness in my feet.
You are doing the right thing bringing it to the attention of your oncologist early on.
All the best!
Helen
Thanks Helen. First round the taxol bag was 500ml, 2nd time reduced to 460ml. I want it to work of course that is the most important thing, but I worry about permanent damage. Maybe I should just be concentrating on it working and not focusing on such a small thing.
Beth ❤
It is important to mention it in case matters get worse because CIPN (chemo induced peripheral neuropathy) can become extremely debilitating. If it hasn got any worse yet you may find your oncologist is happy to stick at your current dose.
It’s my understanding that it is the platinum drugs that do most of the work.
All the best!
Hi Beth
I was in your position two years ago. I was stage 4 had 4 carbo/taxel and then op in December 2015. After two more rounds of chemo I was NED in February 2016 and went on to do another year of Avastin.
Well I'm still NED and enjoying life...so I hope that you will have a similar experience....go you! x
Hiya Lindy. Treatment plan sound almost identical. So glad you are doing well, positivity helps big time!
Do you mind me asking what your op was to remove?
I know I have mass/tumour on right ovary and some 'lesions' on my abdominal wall. I'm not sure if they will remove one or both ovaries, womb?? Take the lot!! I don't need it and like you....just would like to have NED x
Beth ❤
Brilliant Photo, loving the positive attitude ! xxx Kathy xxx
Thanks Kathy. Walking away from clinic after treatment 2, sun came out, scarf came off ... feeling fab!
Beth ❤
You go girl! You look great. Love the glasses too. No doubt it won't stop you!!! oxox
Thank you. Clever make up and sunshine 😂 x
Hi Beth and the ladies who have replied to you.
Your posts have lifted my spirits. I'm stage 4B (don't know what the B means to be honest) and told that surgery isn't an option for me but was ok with that until last week's chemo when the on duty oncologist, who visited the chemo clinic, questioned why I was on weekly carbo/avastin only. I explained that both Taxol and then Taxotere hospitalised me each time so my oncologist has put me on the weekly without the nasty one. Oh, he said, that won't be as effective then. I have been sad about that all week but my own oncologist is away this week but his secretary will tell him on Monday that I need to talk to him. I'd rather have bad side effects and get a nasty if it's going to do the job. Having said that, after 10 weeks of chemo (2x 3 weekly and 4x weekly) all my tumours have reduced by half and there are no new sites. My CA has also dropped by over half so I know something has worked but don't know if it stopped once I was put on carbo/avastin only.
The neuropathy, which hospitalised me almost paralysed after taxol, has been greatly helped by L-Glutamine and Alpha Lipoic Acid taken in a double dose every day. I now have numb finger tips and toes without tingling but they are slowly returning to some normality. I also can knit now and I'm sure that the exercise is helping but sadly I cannot hold a paintbrush with enough steadiness to paint yet - my favourite pastime - but I'll get there I'm sure.
I never expected to be cured and I have come to terms with that but I want to give it the best chance if I can so hearing of the success of stage 4 ladies greatly boosts my morale. I am not a half glass empty person but this last week has been a struggle. So, thank you.
Love and hugs and good health to you all.
Kryssy xxx
Hi Kryssy
Oh it sounds like you have been having a horrible time of it. Little uncaring/thougtless of on call oncologist to raise those doubts to you. Remember they don't all have the best bedside manner!
I am not really that knowledgeable or experienced but instinct tells me that you should stay calm and try not to worry, speak to your oncologist in depth when they return. I have started to question everything with my team, (only had 2 appointments so far) not because i dont trust them but I want to understand what's going on and why they do what they do with regards to my treatment and drugs etc. It is my body and I want to make sure I am getting the best treatment plan possible. Not much else I can control at the moment!
For OC, because it is mostly only diagnosed after side effects show and that's what takes you to the doctors, it's often at stage 3 or 4 by then. I also don't know what the letters mean...ill add that to my list of questions for my next visit. But stage 4 does not mean terminal or final. I am also hearing about so many lovely ladies who are 3, 5, 10 years on and doing brilliantly!
Please let me know how you get on Kryssy.
Sending YOU love and healing hugs.
Beth ❤
Hello Krissy, hopefully when you see your oncologist on Monday he will be able to put matters right with you.
Maybe another CA-125 to help show you the platinum drug is still working. Many here have had dose reductions or complete cancellation of taxol and still have a good outcome. It’s my understanding that most of the work is done by the platinum drugs anyway.
Take care and here’s hoping you’ll soon be painting again.
All the best, Helen
Thank you Beth and Helen.
The good thing with wobblies is that they eventually stop wobbling and steady themselves. I'm feeling so much more positive today. Hubby says I must be feeling better as I've been nagging (that's constructive advice in female world). i.e. "Shift that mess of computer bits off my kitchen table please 'cos I'd like to use it" or "Could your shoes, wellies and slippers please return to their rightful place of residence instead of being piled up in the sitting room". Nagging? Moi? Never...
Still, I'll not let one remark from a doctor who doesn't know me spoil my life. My lovely Dr Onc is very kind with a lovely manner and despite him telling me constantly that I'm not normal I respect his decisions and know he only wants the best for me.
Sorry to hijack your post, Beth, but may I say how lovely you look without your hair. I still look like a half plucked turkey but who cares? Flipping cold at night though. Those oldies who wore nightcaps knew what they were doing.
Happy days to all.
Love and big hugs
Kryssy xxx
No need to apologise Kryssy, I love that this group is so open and helpful and supportive.
I've bought from Macmillan shop at my hospital, what my son calls my skull cap. It's soft cotton and so comfy, and keeps my head warm. I'll try add a photo.
Love and big hugs back to you Kryssy ❤❤ xx
Got the photo and sent reply. Thank you xxxx
Great post Beth , you look amazing . Your fighting spirit and positivity shines through and well done for raising such a large amount for charity .
I am also stage 4 , had same chemo with 8 hour surgery after no 4 . ( last Nov ) Had number 14 Avastin last week and currently ( fingers crossed !) NED with CA125 9 ( was 3880 when diagnosed!)
Sending you best wishes for your treatment and hope the side effects are minimal . There are lots of lovely ladies on here that can offer advice when needed . Stay strong
Love Kim x 💜
Fab photo and fab attitude!! Congratulations on your fundraising, too. Hope the treatment does a fab job as well.
Love, Solange 😊
Love the pic, we did something similar at my diagnosis for CRUK a load of freinds shaved their heads as mine came out, felt amazing the support shown by such lovely freinds and family and for a great cause. Hope the treatment continues with no dramas and you get that op good luck xxx
Hello Beth.....and all you lovely ladies. I was also diagnosed at Stage 4 in Sept. of 2014. I had surgery first, then 6 cycles (18 weeks) of the carboplatin and taxol. On completion of that, I enjoyed wonderful remission of 27 months. I then recurred and had 5 rounds of carboplatin/gemcitabine/avastin. The tumor did shrink by about half and then stayed the same, so I remain on only the avastin every three weeks. Just wanted to let you know so that the stage 4 diagnosis doesn't scare you. We're all different, and they come out with new treatments all the time. I'm sending good thoughts and prayers to all of you. Judyved
Thank you for sharing. Stage 4 does sound very scary, doesn't it.
Do you mind me asking, when you had your initial op, what was removed?
I'm nearly 4 weeks away from my scan to see if/when they will operate. I have yet to ask what they intend to remove.
How does the Avastin every 3 weeks make you feel?
Love and healing hugs to you Judyved x
Beth ❤
HI Beth.........I was diagnosed on Sept.16, 2014 and had a total abdominal hyst with removal of tubes and ovaries on October 1, 2014. They removed my uterus, tubes, ovaries, omentum and scraped away any tumors they saw on the outside of my intestines and liver. I started on the carbo and taxol about 4 weeks post op.
The avastin is a lot easier to take than the chemo. My only side effects seem to be a lot of aches and pains, and a runny nose! Of course, I'm 71, so I may have been developing the aches and pains in any case!
I wish you the very best with your treatments. You seem to be a strong woman, and I know you'll do well and be healthy again.
Sending hugs and so many good wishes to you and your family.......Judyved
Thank you. That does sound like a lot of surgery. I will be asking my consultant in my next visit, what op they plan for me.
Take care
Beth ❤
Good for you Beth your story similar to mine. I am 4b inoperable. I had 6 carboplatin and paclitaxol every three weeks then two with avastin added now avastin only every 3 weeks. Avastin only far less side effects no constipation or nasty taste no steroids or anti sickness drugs and there side effects. A little more energy and peripheral neuropathy not so bad. Good luck.
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