I'm better than I've been in 2 years. - SHARE Ovarian Can...

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I'm better than I've been in 2 years.

eileen_alberti profile image

Diagnosed with Ov cancer 4 Dec. 21,2016, I had surgery Jan 3, spent 50 miserable days when I couldn't eat anything without a stomach ache. I really didn't want to eat at all. Feb 15 started taxol & carboplatin, had 2 treatments, 3rd treatment bad reaction with HBP and massive spasm in the back. Had to quit. But, CA 125 went from 77 to 11.3 Lost all my hair, think if it did so well on that, it may have gotten the cancer. I'm still deciding whether to start the next round or not. I really like feeling good. Any input welcome. My best to everyone , Eileen

39 Replies

What Stage were you and were you "optimally debulked" when you had your surgery?

Stage 4 and I don't remember the word "optimally'. I can tell you it was the worst surgery of the 6 abdominals I've had. I've lost my surg report, probably got thrown out with recycles. 33 staples and 13 inches long, a world of hurt. Don't even mention constipation. I can now look back and say to myself, I can't believe I survived that. 3 months ago will do you a world of good.

Hi Eileen, What did your oncologist suggest when you discussed this reaction with them?

I believe the chemo is a full course broken down into balanced doses and when possible we should have them all unless, of course, it becomes contraindicated. I was lucky in that I didn't have any major reactions, just the usual nausea, hair loss feeling rubbish etc etc. See what your team suggest, they could be able to manage your treatment better for you, the spasm may have been coincidental, it possibly could be worth trying the next dose. Please don't just stop having your treatment without full discussions with your onc team. ❤xx Jane

I started with carboplatin & taxol, had taxol second week, then had to wait a week because platelets went down. Was having back spasm and high blood pressure with first 2 weeks. The 3 rd treatment BP blew up and spasm like labor. Couldn't get out of chair to relieve it because I tilted back & in so much pain. Treatment terminated after 5 min of taxol. New med docetaxel every other week to allow for recovery from side effects. I've always had problems with drugs [even such things as aspirin and tylanol] so I'm not surprised. Doctor was. Right now I'm fighting a sinus thing, had it since Feb. It's worse than ever. BTW, I'm 72 and have been told that a lot of this is due to my age. I'm not buying it. Thanks for the encouragement. Tell me about your treatment.

Yes don't think it's to do with your age either. I think it's more to do with our genetic make-up, I get nearly all the side effects on chemo which is debilitating - and even on weekly Taxol I'm very nauseous and unwell , just having 1.5 days feeling ok each week which is draining (pm of chemo day, most of the day after and usually a random half day)

Hope whatever you decide that you feel supported and can talk it through

Clare xx

I hardly think it's your age either and sometimes it is just too easy to blame things on our age per se and don't get me started on our hormones being blamed for things either 😤. Your history with all medication is really difficult for you and your difficulties should have been taken into account when your treatment plan was formulated. I'm so sorry you have such issues with meds in general and maybe your doctor needs to discuss this with you in more detail. I hope you find an answer to this, I still think we need to have the full chemo if it is at all possible but if it isn't for you and your onc is happy to put you on 'watch' then that may be the way forward for you, I wish you all the very best for your treatment and hope you feel much much better very soon ❤xx Jane

My onc doesn't want to be bothered with "questions". I just got a brochure from care management which is funded by medicare. My appt' is for 4/28. I'll let you know how that goes.

Eileen, I don't know where you live, but if your Dr won't take time with you to explain everything. Then you might look elsewhere. My Dr appt. Are sometimes 40 minutes. No one cares because we all know she will spend time with everyone. She's in Palm Springs if you live near there. She even came to check on me on a Sunday when I was in the hospital. I'm very happy with her. Best wishes.

I live in Fl, west coast. Just got signed up with a 24/7 care mgr. associated with medicare. Had phone interview today. I can discuss side effects with them. Maybe I can get help with interstitial cystitis. Didn't realize chemo affected that. My taking time away from chemo may have caught my doctors attention. She had more time for me but I wouldn't call it comfortable. I understand they have to protect themselves because this is all life & death, and I have to get what I need to continue on. Since this is all new to me [began chemo 2/15] I'm still in the shock/learning curve. Less shock/more learning. This forum has been excellent for me. Got methylprednisolone for burning after chemo. Next treatment 5/15. I have to say that my arthritis and fibro have not been bad since starting chemo. I've heard that happens over the years.

i hope this note finds you in a good place today and all you needs are being met. blessings, Eileen

Happy to hear you are doing better. Keep up the good fight. Blessings, Liz

How are you doing? I'm hoping you are better. Keep up the good fight! I'm stage 3c, we are strong woman. And together we can get though anything. Eat lots of greens. Keep your immune system strong. Best wishes for your recovery.

Eileen, what stage are you? I'm stage 3 C having my last 9th round of chemo on Thursday then surgery . CA 125 was 858 now down to 74 thank GOD. I would talk to the doctors about medicine to control side effects . I think it's important to finish chemo treatment plan just my thought. Praying for you it's hard making decision on your health. Keep strong ,God Bless

I'm stage 4, had surgery first, don't know my original CA 125. 77 was before 1st chemo, after surgery. Surgery knocked me for a loop. Couldn't eat for 50 days. I think this forum is good, I'm finding out more from survivors then medical people.

Lizchips profile image
Lizchips in reply to faith1962

Hi, I am stage 3c clear cell ovarian cancer survivor. 2014, April. Currently I'm waiting on petscan on my bones only. Praying for good results. Had pain in back near T8. Hope all is going well with you. I try to eat salmon a couple times a week. I do take breaks from. Eating healthy. Get tired of same meals. Wish we all lived closer. Could have a girls night out. Best wishes always. Liz

If you can I'd finish the treatment or as many as you can manage. Up your meds, change them if need be and start alert

Take care

Good advice, thanks

If your ca 125 is in such good condition..what is the need to do more chemo? Definitely talk to dr.they will monitor your counts

That's what I've been thinking. But: medicine is a business. It's a big place with lot's of overhead. I've got to make the rent, payroll, etc. Hate to be cynical, but where were these people when I was asking for help for 3 years?

Hi Eileen.

Choosing to go through all the treatments or not is a discussion you can and should have with your doctor. It's a balance of quality of life and reducing the risk of the cancer coming back if it indeed is in remission. Before you make that decision your doctor will probably want to do another CT scan to see if there is any residual disease that can be detected.

The term optimally debulked means that when they did the initial surgery, they got everything out that they could and anything left behind was 1 cm or less. In recent years some doctors have really pushed to have nothing visible left with the assumption that chemo will get any stray cells that are left.

Best wishes,

Gwen

Then I did have optimal debulking. Ct did show something near liver, otherwise it was like sand.

Eileen, what was the "something" that showed on your liver? It is important for long term survival to be optimally debulked, which means

"no macroscopic disease visible". There are many pre treatment drugs given to control side effects. Beginning 10 hours before each chemo infusion I had nausea meds, antihistamines and two different steroids. Additionally, the chemo needs to be infused SLOWLY via IV. The faster the chemo is jammed into you the more likely a bad reaction. I would not stop treatment. I would get a second and third opinion. If your CA 125 is in the 70's that is not remission and it's not in the normal range. PLEASE get more input on this. Your reactions could be from unprepared introduction of the chemo. This has ZERO to do with your age. I think the medical community marginalizes/dismisses women over 45! Tesla

The something is an unidentified 2cm round mass in the peritoneum near the liver. I'm going to get a printout of my records that I lost somehow about 3 weeks after surgery. I see surgeon next week.

From the info you sent, I see that my treatment is jammed down fast. All pre-meds done just before chemo. My CA 125 was 77 after surgery, it's now 11.3 after 2 treatments. After 2nd treatment I had to skip a week because my platelets were too low. My main concern with continuing those meds is stroking since my BP shot up. The spasm was like the worst contraction that wouldn't release. I also had breathing constriction. Right now I'm trying to beat bronchitis. But, I'm still in better shape than 2 years ago. I've given up my cane. I passed my shoulder replacement 1 year check up with flying colors, and it's really great to be without that pain. The ca surgery was the 6th in 3 years. So.....I FEEL GOOD. I went to VT with my friend who came to stay with me for first chemo and stayed until last week. I flew back with her. She hates the plane. So we support each other. I'm good enough to be on my own.

Thanks again for the pre-med info. I'll ask about that. It's amazing what we don't know about. You have no idea how much I appreciate the new info. Sending you my best regards Eileen

This forum is more open and honest than the other "real time" support group I belonged to. I think perhaps it might be easier to write and respond to comments/questions in the privacy of our own homes. I don't know where I'd be without the information these astonishing women share freely. I feel a compelling responsibility to share what I've learned. If I can spare ONE woman some of the anguish, misery, pain, fear and anger of this disease, then my misery will be vanquished. Sending you love to keep strong. Do not let this hideous, cruel disease diminish your spark for living! Tesla

My spark is in bed today reading and watching TV. I just need to do that every 10 days or so. Weeelllll, maybe a little more often now-a-days. I pushed thru all those work days, no more.

And it is up to us to tell all the women out there about this thing. In all my years, I never heard word one.

You are correct. I never heard a single word about Ovarian cancer symptoms AT ALL! Not even after I survived breast cancer! It was like it didn't even exist! The lack of awareness highlights the prudishness of our culture. Here in the US, it is only recently that we even HEAR the word VAGINA spoken aloud! Women's unique needs have been IGNORED for too long. For God' sake, we populate the planet and ought to be given respect and proper educated medical care for perpetuation of the species alone! FYI, Netflix is my drug of choice and I use it all the time. Tesla

Well, ovaries are not as glamorous as breasts. Neither are prostates, but they have all the research, mostly because it was done by the mostly male dominated scientists. So now we know our mission, and we're on it.

Honrath profile image
Honrath in reply to Tesla_7US

I so agree

Honrath profile image
Honrath in reply to Tesla_7US

Yes yes yes. Carry on

Prayers and thoughtscoming your way. 🙏🙏😇🎶🌹

Yes we MUST start being more vocal and communicate informatio to anyone who need help!!!

Best wishes

Honrath

Honrath profile image
Honrath in reply to Tesla_7US

Well said

That's actually really good news that you had optimal debulking. I was interested reading your history. I too have had 6 abdominal surgeries, the first 2 prior to being diagnosed with cancer. I'm also very sensitive to a lot of drugs and have been all my life. I can't take most pain meds. The good news is that after my last surgery they finally had to use IV Tylenol to get the pain under control. It's my miracle drug - no pain and none of the side effects I had with the other drugs. The issue in using IV Tylenol is the risk of causing liver.

Best wishes to you in deciding what you want to do going forward. Like most things in life, there's no guarantee. But what ever direction you go, it will be the best one for you.

Have a great day! - Gwen

Hi Gwen: do you have fibromyalgia? I too can't use anything for pain accept naproxen. Also 1200 mg neurontin. I used tylanol and coughed and lost my voice for 38 years since my first son was born. Went the allergy route and didn't get much help. I finally figured it out myself when I took ultracette [ultram plus tylanol] and lost my voice withing 30 minutes. So for surgery I beg for ice packs. And yes, life is a series of choices. And, we do know our bodies better than anyone else. That's my story and I'm sticking to it.

wishing you all the best Eileen

Hi Eileen, LOL and what a good story you have. Some people don't get that we know ourselves better than anyone else. Nope I don't have fibromyalgia. Both my husband's ex-wife and daughter have it as well as endometriosis, and I can appreciate that neither is a condition I would wish on anyone.

Wish I could help but I just started chemo, Ovarian cancer IIIB, on Thursday, been very ill for the last 5 days. I thought about stopping already!!! Then I can't. I've been given a second chance so after I read you had to stop because of the reaction I'm going as far as I can . I hope that you can start again after all you've gone through so far ? You didn't mention if there was another treatment you could do. I want to feel good again also. I'm sending prayers and positive thoughts to you. Whatever you're going to do may the angels guide you to what's best. I admire your courage.

I hope you're feeling a bit better. Use the art of distraction: become one with the TV, movies, talking, I do beading. I love the colors and shapes, and following a pattern rearranges my brain. Music is good too. I've had fibro since 92 so I learned this early on. I'm going to chat with gyn onc on Tues. Then there's the dental issue. Boy, all these big decisions. I want to have to be making only decisions regarding "orange juice or prune", from Sadie,Sadie, Married Lady in Funny Girl. keep us posted, we're here for you

I was diagnosed August 2014 I went through carbo and taxol I did really well on the treatments lost all my hair in February had total hysterectomy in October of 2016 I had a double mastectomy. I am brca one positive. I was cancer-free for nine months. This year at the end of February I started getting mid abdominal pain that just kept getting worse I went to my oncologist they did another CAT scan found it my cancer was back I had such severe abdominal pain I ended up in the hospital for a week and they drained seven liters of fluid of my abdomen treatment kept getting delayed but I'm finally in treatment and three different chemo drugs. My ca 125 went from 1900 to 1000 after 2 treatments. My biggest advice to anybody else to watch that ca-125 level because mine started elevating in October 2016 but my cat scan showed cancer free. Turns out three months later it was back and it has Ben The most miserable time of my life. Good luck with everything. This is a very nasty disease and one that doesn't stay gone for long. Currently I am undergoing chemo and will be for the next 5 months then they told me they would give me the chemo pill for the rest of my life. I wish you all the best and will pray for you during your battle

Thank you for sharing your history and all the best to you Eileen

You should try to finish your series of chemotherapy treatments. More is best so you don't have a reoccurrence. Did you get stomach wash chemo. Also known as IP? Keep up the good fight. Best wishes

Best to you 🌹🌷🌻😎😎

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