20 months since first line chemo ended and it's back. Confined to peritoneal cavity, no infiltration. No surgery necessary. Many tiny implants, classic text book re-occurrence. Will have doxil/carbo once a month for 6 months. Then parp inhibitor niraparib. I hope to god I do not lose my hair this time!
It's back. I have a plan. I'll fight this shit ... - My Ovacome
It's back. I have a plan. I'll fight this shit again. Grateful to be here now. I'll keep living my best life.
So sorry to hear that news. You are sounding tough and determined. I will have my fingers crossed on the hair keeping thing. Wishing you well!
Hi Tesla, extremely sad to hear of your recurrence . Gauri has her scan and bloods week after. No evidence of recurrence in the peritoneal cavity but small lesions between the lungs and the chest area and growing, albeit slowly. Need to know the size and if operable, will.go for it. She prefers surgery to chemo, if possible. Toes crossed for yet another session . Else her health is good and goes about her daily chores including holiday travels without any much problems.
Wishing you all.the best to beat the s..t out of this. Do they plan IP chemo again or just IV?
Naimish
Naimish, Thank you for your kind words. Very grateful to hear Gauri is enjoying life and not suffering. Please give her my warmest wishes for continued health stability! My recurrence is "seeding" of hundreds of tiny, tiny cancer nodes beginning their new life in my peritoneal cavity. We've caught this early and 6 months of once monthly Carbo/Caelyx begins next week via my titanium chest port a cath, which has remained in place from first line. Surgery cannot get rid of all the tiny buggers. I am quite hopeful for another significant remission. I too, would prefer surgery to chemo, but with nothing focal/significant to remove, that's not an option. After chemo my oncologist plans to put me on Niraparib, parp inhibitor. I'll keep the group informed. I like to share information with everyone here, in the hopes it may be of comfort or use to them. Take care of yourself as well. T
Hi, I've just finished 8 month on Carbo/Caelyx known as Doxil also this was my 5th line treatment in just over 3 1/2 years had good result with minimum side effects all manageable No hair lose manly tired and you need to keep up the moisturizing and constipation was a problem..Take care Lorraine xx
So sorry to hear this, Tesla - you have cheered us all on, and now we'll do the same for you! At least it's confined to peritoneal cavity and hasn't gone walkabout and they're on to it early. All the best!
Yes, I'm grateful it's not, as far as PET/CT can tell, gone to my brain!!!! I'm also grateful I'll get to keep the rest of my colon! Much to be happy about.
So sorry to read this, I was beginning to think you were going to be one of the ones without a recurrence. Such a long remission should stand you in good stead.
Wishing you all the best with your new treatment. I’ve nr had doxil but from what I read, moisturising is essential. Start now! All the best. Helen
Hi Helen, I had a fantasy that I got to live as long as my parents who passed at 89 and 92. I thought since they lived to be very, very old that I would too. So, fighting for my life as a comparatively young person is still a shock. I feel like I'm stuck in someone else's very bad dream. The surreal aspect of this actually helps me. I think if I spent time being disappointed and angry I probably would have died by now. So, I'm happy that I'm not currently in any pain and my quality of life is still very good. Fingers crossed. T
I too find it very surreal to be fighting for my life and fully expected to live as long as my parents (on the other hand my father had dementia and his final 6 years in a care home, and I wouldn't want that either). I am at the young end of the favoured 'baby boomer' generation and we thought we were invincible, so the fact that so many of us are being hit by cancer is hard to take in, isn't it? But as you say, quality of life is good, so on we go!
Do you remember that pop song, “those were the days my friend, we thought they’d never end, we’d fight and never lose,” it seems so apt to me now, for us baby boomers.
As long as I think I’m not going to lose, that’ll do me.
My father lived to 87 but the last 3 years with Alzheimer’s which I wouldn’t want at all. So I rather think 84 would do me fine. My mother though died of colorectal cancer a bit younger than I am now (70 next month).
My mum had colorectal cancer too, Helen, but she was well till 79. There's quite a bit of colorectal cancer on that side of the family - I wonder if there's some connection that both my cousin and I have OC (but we're BRCA negative). My dad got to 92 with his Alzheimer's.
Oh yes, I remember that song!
Dear Harpist UK, I'm sorry you don't live here. I'm a flutist, worked with harpists for 20 years. Love your instrument! 💖Margaret
OK, I have to confess that I am a harpist, but I am a crap musician. Music requires more focus than my ADD would allow, so I became an illustrator/painter. I took harp lessons for 8 years, but couldn't sit still long enough to finish a single piece of music.😐
Do you manage to sit long enough at your painting, Tesla? I don't think it matters which creative art you do, they are all a wonderful distraction from what we have to deal with.
Yes, painting and illustration allow me to hyper-focus. It also has NO RULES, the way music does. I've always had a hard time remembering numbers and music is full of numbers and counting. When it comes to music I am not a team player because my mind wanders and I forget my parts. I'll post some of my art here soon. T
Oh wow! These two instruments do sound beautiful together. Mine is a lever harp or clarsach and that's it in my profile pic .. plus my actual hand! Happy playing, Margaret.
Mine is a full sized pedaled concert harp, Lyon & Healy, Starkey Model. It's a gorgeous instrument in mint condition with the tone of angels. Maybe I'll be a better harpist if I get to heaven.
One of my harping friends here has a Lyon & Healy - she's originally from Wisconsin but settled in UK. Nice harps. You realise that we can jump the queue to heaven with these!
I have seedlings contained in my peritoneum too- found incidentally during my gall bladder op 4 weeks ago-It was such a shock as I have been feeling so well and my hair was getting its old shine again ( had chemo 4 years ago after op). I’m still in shock - having Carbo/caelyx on Thursday . Had you been having any symptoms - or was it seen on scan.
My CA125 went from 9 to 53 in 5 months. Had PET/CT and seedlings showed up. Only symptom was very, very tired. I knew it was back. I also get dizzy from this with a loss of balance, which had also happened first time. No ascites though!😊
I have had no symptoms - I’m still in shock . Feeling wiped out since starting Carbo/caelyx on Thursday. Hoping to feel better by end of week. Its just so amazing that you think you can get on with your life and put it all behind you but then in an instant it can all change and bites you back again. Sorry I’m sounding out of puff - but I’m just so scared and feel so down. X
Ma, do not apologize for your feelings. Vent here. We all know what you're going through.I have a long list of things I want to get done.When sadness, rage and regret wash over me I remind myself those feelings are legitimate. I write a quick note to self describing my grievances and email it to myself. That helps me to stop ruminating so I can focus on the next baby step to the small task at hand. I no longer think in huge project mode. Now I say to myself that each baby step should be celebrated as they are leading me to my goal for the day. A warm gentle hug to you.
Good luck to you Tesla! You sound positive, and although it’s the worst news, you are in the best position to deal with it. Would be very interested to know how you get on with Niraparib. Are you BRCA positive? Vicki x
Hi Vicki, I've had genetic testing on my blood only and that's negative for BRCA. However, I spoke with my oncologist yesterday and he's going to have the original tumor tested. I also had breast cancer in 2006. He thinks I may have some sort of syndrome they haven't been able to detect yet. I'll post my treatment results. My oncologist is VERY EXCITED about this Niraparib parp inhibitor. In the US, since it's been approved by the FDA (Food and Drug Administration) our health insurance pays for it. BRCA positive patients get far better results from Niraparib, so I'm hoping my tumor tests positive for that.
Dear Tesla,
Thank you so much for sharing your story. I hope you sail through your planned treatment and those seedlings are vaporised!
I am probably in your age group, with a brilliant mother still going strong at 96, so I just figured I'd be like her. She never had cancer, but we lost my father to a brain tumour when I was 12.
Just finished first line treatment for Stage 3C high grade serous carcinoma. I was lucky, as although, like you, there were hundreds of lesions throughout my abdomen, none had invaded my organs.
A recurrence is probably inevitable, but I am pretending it won't happen. Can't have Avastin, so I put myself on a Cancer fighting diet and I receive much love and support from extended family and friends.
I wish you loads of good luck and best wishes for your treatment. You have already withstood so much, this part will hopefully be a breeze.
Kind regards,
Laura
Laura, thank you for the encouragement. Pretend a recurrence won't happen. Honestly, just forget about that possibility and go about your life. I've become oddly, happily, healthfully detached from MYSELF! It's the weirdest thing. I literally feel like I'm watching myself as a character in someone else's life! So far, that other gal is doing OK.
Hi Tesla, so sorry to hear the news. It's a horrid disease! But you are a fighter like all of us here in our forum. You've done it before, I'm sure you'll do good again. You are very brave and determined person. Take care. ❤️❤️❤️
Hi Tesla
So sad you are having to go through more treatment. I hate this disease and they need to find an answer to keeping it in its box !
Fingers and everything crossed you have a good response from chemo with minimal side effects and keep your hair .
Can relate to the shock of having to deal with this and confront our mortality at a young age . ( 55) Been caring for my 84 year old mother on and off for the last 10 years and as my great aunts all died in their 80s assumed I would be similar.
It’s good you have a plan in place and hoping all goes smoothly with great results.
Yes I’m slowly getting there in terms of trying not to worry about things I can’t control. Although not always easy ! But definitely grateful for every day .
Love and best wishes Kim x 💜
Purple, After also taking care of elderly parents and seeing dementia up close, I've decided living to 90 might not be much fun. I'm going for quality, not quantity. During first line treatment I became so exhausted by sadness and fear that I just didn't have the energy to be worried anymore! Best to you. T
Best wishes for successful treatment. Move over WonderWoman. Tesla is taking over
Nancy, my first grandchild is arriving in September! I must be here for him and to help my son and his wife. I want to experience the sheer joy of seeing my own child becoming a parent!
I have a strong feeling you'll witness all this and more. xoxo
Nan222, I have to do something here in US to raise awareness about this hideous disease. We are very uninformed over here.
Sending lots of hugs xx I just have to say your words give me strength!! Thank you for sharing xx
Selk, I am grateful to know that my experience can be helpful. I think of all the women who have helped me here on this forum. Honestly, this group of people whom I will never meet, has actually been of more help than the "real time, in person" support group I used to go to. Women here are safe to share information and feelings 24/7!
Oh Tesla! So sorry to hear your news! I suspect I will be following you next month on to carbo/caylex...already know I’ve got 3 lymph nodes which are ‘too large ‘..best of luck with it.. keep us posted xx
Lyndy, I'm going to keep living my life, doing what I would normally do, only at a much slower pace. My greatest relief is that my family is grown and launched. My son's wife is having our first grandchild, Holden James, in early September. I should be finished with chemo by then and enjoying the new baby!
I also send hugs. I've known I had masses of seeding since my debulking, also on 2nd line now (to deal with worsening symptoms). It doesn't mean we have to stop doing things we love. We just have to be more gentle with ourselves. It's a good excuse to indulge ourselves!
My thoughts are with you, Tesla, I guess it must be a shock for you but there is still a lot of life left to live.
Iris XX
Right now my greatest concern is for my husband. He hoped/thought I was "cured". He's very sad right now. I'm just working fast to get things done, knowing that in a few weeks I won't feel like doing too much.
Sometimes I think it's harder on the husbands than us. An odd statement I know. But we have so many support systems in place. Luckily my husband and I talk a lot about what's going on, but still...
Here's a hug for your husband.
Thinking of you...stay strong.
I’m glad you shared with us Tesla. Thinking of you over there in the States. Glad you are going to be on a PARP. Stay ‘detached’...and keep living ❣️
I am sorry Tesla-its a bugger isn't it. I an so sorry its back for you. We so worry constantly don't we. How did you find out? Routine CT scan or did you have signs?
I am glad you have a plan going forward and the fighting spirit.
Please let us know how you do on chemo. Hopefully you can keep you well earned hair! We are pulling for you. fight like a gilr!
Xx Carol
FIGHT LIKE A GIRL! I am so proud to read your Golden Words! Women are powerful humans. We produce the entire world population willingly and take care of them from cradle to grave! I'm waiting here at the hospital to have bloodwork done by a woman so another woman can give me chemo. Thank God for WOMEN! So, why are my female organs trying to kill me? Irony. I love it. 😊
Hi. Really sorry to hear the beast is back and that you’re facing chemo again. I found the first recurrence (after 8 years) harder to manage emotionally than initial diagnosis but I’m still here 14 months after second line chemo and very much hope to put off the inevitable chemo for as long as possible. You’re a very welcome presence here and sound a pretty damn strong and well grounded lady. I send you my very best wishes and a bunch of 🌼🌹🌻🌸🌺 to make you smile. Love Jo
Shrop-Jo, This forum is my drug of choice. The people here GET IT! Cancer is exhausting. Family, friends and loved ones can only take so much of "Cancerworld". They get burned out just like we patients do. I can come here and HELP someone else! HERE, I am a WHOLE person, not a set of treatment protocols. I can share what I've learned and make my misery COUNT for something by giving back to all the kind people who are just trying to keep living and loving. We are all different. We are all the same.
Hang in there, Tesla!! Mine came back, until 4 years ago, since I've been on the PARP inhibitor! I wish you all the best and more!💖Margaret
I also had numerous "microscopic lesions", the PARP inhibitor took care of them!!👊
Dear Tesla, mine came back too, in lots of tiny tumors. Taxol/carbo killed them, as does the PARP inhibitor I've been on for almost 5 years!! Hang in there! We are all pulling for you!💖Margaret
Sorry for the multiple messages! They didn't show up at first, so I kept writing them!😂
Dear Tesla? Damn that is rubbish news....I’m so sorry to hear that.
At least it’s confined ( some form of warped blessing) and they have a plan in place.More to the point, your attitude is phenomenal! I’m wishing you luck and also with your hair, Nicky 💕💕xx
Not the news you wanted but with your wonderful attitude hopefully the next remission will be an extremely long one. Good luck with the treatment, hope you keep your hair x x
Perthgal, Oddly, losing my hair was far worse than losing a boob to BC in 2006. Honestly, one can conceal all manner of missing body parts but there's no way to conceal total, butt naked baldness! Especially since I've worn my hair pulled back in a ponytail for oh, say, the last 25 years!
Isn't it amazing what our minds can deal with and what we struggle with on this journey! Have been so happy to have hair and eyebrows back even though so totally different to before 😀
I know what you mean. My hair grew back thinner and quite limp. My eyebrows and lashes are also sparse. Thank goodness for mascara and eyebrow pencils! Otherwise I'd look like an albino!
Haha! I had my eyebrows microbladed as hardly anything grew back and was too lazy to draw them in every day, very happy!! Now you get on with this treatment and concentrate on that special little bundle arriving in September, just the best possible incentive to beat this. X x
Have you heard about cool caps? Apparently there is a really cold cap a person can wear during chemo infusions that shrinks the blood vessels in the scalp. This prevents chemo from making it into the hair follicles. It's not very comfortable, but some companies that make them are boasting an 80% success rate with people retaining their hair during chemo.
Some cancer centers offer cold caps to their patients, otherwise it's about $365 per month to rent the set-up.
Have tried this! Torture! I was nearly crying and begging them to take it off in the first 10 minutes. They say if you can ride out the first quarter hour you will be ok. It does add to the time spent at hospital as you have to wear it for an hour before and after infusion. Not for the faint hearted, but worth a try if your hair really matters! I tried it for weekly taxol, which I was taken off after 6 infusions - interestingly, the taxol didn't make my hair come out, so if I'd persevered with the cold cap it would not even have been necessary!
margiedoll, thank you for your comment. I've been researching cold caps and found they are not recommended for ovarian cancer recurrence. There is a chance that a patient could get scalp metastases using them. The logic is that if you need chemo again it might become or already be metastatic, in which case you don't want to allow the cancer to get into your scalp, brain, head etc.
I’m sorry to read this Tesla. You have always come across with great strength and spirit, with your determination you will keep living your best life as your post title says xxx
I'm just too damn angry about getting this disease in the first place! Right now I'm getting ready for chemo. I'm eating a high protein, high fat, no carb diet and that's really hard! I notice when I don't eat ANY refined sugar I feel much better, but my brain still craves sweets on occasion!
I like you am having my original tumour tested for somatic mutations. I’m BRCA negative germline. Never thought I’d wish to be positive, but my treatments are so limited now I’m hoping something is flagged up that can help me.
I relapsed within 3 months, so had standard Single Caeylx which hasn’t worked.
Part of me wants to fight to revisit platinums the other part of me thinks can I do that kind of toxicity again! But having a definite plan is where I get strength from.
Thank you for sharing so much of your experience with us all, it’s invaluable coming from someone who ‘knows’ xx
JessicaDi, pre infusion prep and the speed of infusion are crucial. I've been given anti nausea drugs-ondansetron, anti-histamines-benadryl and large does of steroids all beginning within 8 hours of infusion and running up until just before infusion starts. The speed of the drip is SLOW. All of these precautions help patients to tolerate these drugs. All that said, each one of us is uniquely different and sensitive to different chemicals. Talk to your doctor about all of this preparation and whether slowing down the speed of infusion could give you another shot at treatments. A big, knowing hug to you!
Thank you Tesla,
I will mention this, I do have a lot of pre meds , but it doesn’t hurt to make sure I’m getting the maximum I can. 3 weekly paclitaxol I will admit fills me with dread given my reaction to it. And then I only got 3 months...... wish there was something else for me.....hence hoping a somatic mutation of BRACA May open up parps. Xxx
Wishing you good luck with the treatment. Very sorry it's back.