OC has spread to lungs: Six hour debulking... - My Ovacome

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OC has spread to lungs

Sashay2020 profile image
45 Replies

Six hour debulking surgery in June. I have had two infusions of carboplatin/paclitaxal. Sadly, CT scan this morning shows several large metastasis in lungs. Oncologist called this afternoon to discuss adding Avastin. He described the possible horrific side effects. Has anyone had success in shrinking lung metastasis with or without Avastin?

Sashay

45 Replies
27-359 profile image
27-359

Hi. I can't comment on the lung metastasis, but can comment on Avastin. I had it, and did not find it horrific at all. It was a lot easier than Carbo/Taxol.

Jenny

JayGeeCee profile image
JayGeeCee

Hi Sashay

I was diagnosed with stage 4 oc 3 years ago. After debunking surgery I had Carbo taxol. Avastin was added to last three and continued on for about 9 months.

My cancer was in my lungs , kidney, aorta and bowel. I found avastin quite tolérable. Had to up my blood pressure meds and had frequent nosebleeds but no serious joint pain like some ladies have described.

In June my CA125 was 9. I’m due a PET scan in a couple of weeks but so far so good. I’ve been incredibly fortunate to have had great success with my treatment. My last scan read remission complete. Hoping for another clear scan.

Gird you’re loins and go for it. I’ll keep everything crossed for you.

Keep us posted.

Sending positive vibes winging your way.

Joy 😘🤞🏻🤞🏻

Lizzieanne profile image
Lizzieanne in reply to JayGeeCee

Fantastic.

Sashay2020 profile image
Sashay2020 in reply to JayGeeCee

Joy, thank you very much for responding. I just felt so overwhelmed today. My single lady daughter was living her independent life in Georgia. She returned to Louisiana to move in with me in my one bedroom apartment before I had my surgery in June. She’s been very caring and encouraging and I feel so grateful that she works from home and we plan to move into a larger apartment. I just hate that I have disrupted her life. She is brave and strong and wants to go on a vacation when all this COVID settles down. Oh heck, it’s 4:00 am and I am rambling. I swear, I don’t know what I would do without the kindness and generous sharing of experiences and knowledge of the ladies on OVACOME! Thanks again, Joy.

Soldiering on-

Sashay

Katmal-UK profile image
Katmal-UK

Hi Sorry you are having to deal with this. I cannot comment on the cancer but can advise I trialled Avastin in 2007y/08 and would far from describe the side effects as horrific. Yes, there are aches and pains, a rise in blood pressure and a constantly 'snotty' nose and frequent nose bleeds but I worked full time whilst on the trial. Please don't be put off taking it. I know we all react differently but I have never heard of any one having severe side effects. Good luck. Kathy xx

Sashay2020 profile image
Sashay2020 in reply to Katmal-UK

Thanks For responding, It really helps to hear from folks who have taken Avastin. Can you tell me if you had Avastin while you were on chemo or separately from chemo?

Thanks much and best wishes

Sashay

Katmal-UK profile image
Katmal-UK in reply to Sashay2020

Hi Both. Initially I was on Avastin alongside 6 cycles of chemo (Carbo/Taxol) and then continued for the remainder of the year (a further 12 doses at 3 weekly intervals) with Avastin along. I used to have the Avastin on a Wednesday and was back in work Thursday. xx

Sashay2020 profile image
Sashay2020 in reply to Katmal-UK

I see. When I mentioned horrific side effects, I was referring to the more serious ones like stroke and in particular bowel perforation, which I image are rare. I just have not been feeling lucky this year and I thought I would probably be the unlucky soul who suffers bowel perforation. Your comments and those of Joy and the other ladies helps me view Avastin with less loaded emotions. Thanks again, Kathy

Sashay

Katmal-UK profile image
Katmal-UK in reply to Sashay2020

Hi I understand and they have to mention those but hold on to the 'they are rare'. I'm on Olaparib and one of the possible (and thats what they are - possible) side effects mentioned was leukaemia and I thought oh great.... I have OC now I am going to get that as well, so I do understand but all and any side effects are possible but not 'guaranteed' thank goodness. Who knows..... you may not get any!. Do let us know how you get on. Big hug. Kathy xx

Lolotango profile image
Lolotango

Hi Sashay,

2nd recurrence I had Carbo and taxol and Avastin. Had all three from Dec 2018-April 2019

For spread in 7 tumors, all little but by scan i Feb 2018 they all shrunk. Continued with Avastin thru March 2020, was allowed 22 total treatments every 3 weeks. In April had recurrence in new areas once Avastin stopped. I had just some fatigue with Avastin but pretty much could do a lot. I would say go for it,helped keep my cancer away for 13 months.

Sashay2020 profile image
Sashay2020 in reply to Lolotango

Thank you for responding. I needed some time to digest the news about my lungs and learn about the experiences of the teal ladies. I feel a little less crazy and will talk with my daughter about things. Good to hear from you and hope you are having good days. 🙂

Sashay

Lolotango profile image
Lolotango in reply to Lolotango

The only bad side effect was high blood pressure which I never had. Now that I am off Avastin I am also off the blood pressure meds.

Good luck, stay strong and positive, let us know how u do. My CA!25 was between 5-9 while on it.

Sashay2020 profile image
Sashay2020 in reply to Lolotango

That’s wonderful about your CA125! I already have high blood pressure controlled by meds. I guess my meds will have to be increased on Avastin. Thanks again for the information and encouragement. 💪🏽

Sashay

Teamteal2020 profile image
Teamteal2020

I have had Avastin for several infusions ( stage 4 OC) and other than increased blood pressure, I’ve had no side effects and my response to chemo has been very good ( CA 125 is 9. It was over 2000 before chemo).

Try to stay positive and be good to yourself.

Sashay2020 profile image
Sashay2020 in reply to Teamteal2020

Thank you for your kind response. 🙏🏽 Time to get serious about meditation and maybe take a little scenic drive along the Gulf Coast !

Best wishes from Louisiana

Sashay

Alifit profile image
Alifit

I had Avastin after initial Carbo/Taxol in 2016. The list of side effects reads like a horror story but the have to be listed. I had raised blood pressure and intermittent migraine to which I was already prone. Apart from that life went on as normal including horse riding, skiing and as many holidays as I could fit in. I wouldn’t hesitate to have it again if offered. Good luck, Ali x

Sashay2020 profile image
Sashay2020 in reply to Alifit

Thanks, Ali. After my third chemo which is this week, my oncologist will submit a revised treatment plan to the insurer which will include Avastin. After my 4th chemo, he will repeat CT scan to see if lung nodules have shrunk any. I can decide on Avastin then. 💪🏽

Best wishes from Louisiana

Sashay

Georgiatec profile image
Georgiatec

I received Avastin during chemotherapy, then 22 cycles as a maintenance drug. I can honestly say it hit the mark where the cancer was concerned. The main side effect I had was high blood pressure. However this was quickly sorted out with medication. Avastin seem to attack my joints, but I think it was worth it.

Good luck with your journey, sending lots of strength and positive energy xxx

Sashay2020 profile image
Sashay2020

Good to hear from you, Georgiatec. I appreciate your taking the time to respond. I know my experience may be different, but I am encouraged by your words. I had ruled out Avastin, but now I will research more and seriously consider it. Thank you!

Best wishes from Louisiana

Sashay

SUE7777 profile image
SUE7777

Hi Sashay,

I'm really sorry to hear your news, my oncologist thought my oc had spread to my lungs but it turned out to be pneumonia. I'm on first line treatment, I had 6 Carbo/Taxol treatments and Avastin was introduced on the 2nd one, I've just had my 10th Avastin and the side effects have been okay. I have aches and pains but find exercise helps with that and I am taking everything natural to keep the bp down, beetroot juice, porridge, dark chocolate avoid red meat if your a meat eater also meditation is fantastic. I wish you all the very best and a big hug Sue xx

Sashay2020 profile image
Sashay2020 in reply to SUE7777

Thanks so much for the encouragement, Sue. When I spoke with my oncologist, he said “I am not implying that you will die soon. Some women that are stage four live for years.” I will hold that thought. I’m glad your doctor’s concern about your lungs proved negative for cancer! Your kind response means such a lot to me.

Best wishes from Louisiana

Sashay

candyapplegrey profile image
candyapplegrey in reply to SUE7777

So is Avastin something they use after Carbo/Taxol? Or can it be used instead?

Sashay2020 profile image
Sashay2020 in reply to candyapplegrey

Oncologist discussed adding Avastin to carbo/taxol. I need time to decide. I have my third chemo tomorrow. After 4th chemo, CT scan will be repeated to see if lung nodules are shrinking. I would rather start Avastin after I finish chemo, but a delay might not be the best course for me. I have read where it has been started after chemo is finished. Guess it depends on the doctor and the patient.

Best wishes from Louisiana

Sashay

SUE7777 profile image
SUE7777 in reply to candyapplegrey

It's used at the same time, you get 15 treatments every 3 weeks usually so it will go on after the chemo has finished which is the situation I'm currently in. They call it maintenance. Hope this helps. Sue xx

Sashay2020 profile image
Sashay2020 in reply to SUE7777

Thanks for the information, Sue. I see why they put a port in. With my new oncologist and hospital, I see a chemo nurse who accessed my port to draw blood. I use a prescribed numbing cream before I leave for bloodwork so the needle going in the port is not bad. Better than having both arms attacked as was necessary when I had my most recent CT scans.

Best wishes from Louisiana

Sashay

SUE7777 profile image
SUE7777 in reply to Sashay2020

We seem to be twins as I was diagnosed 3b aggressive so we'll keep an eye out for eachother. Loads of love from London XX

Sashay2020 profile image
Sashay2020 in reply to SUE7777

Sounds great to me, Sue. I do have a bit of good news. CA125, which started at 177, then dropped to 25 after surgery and first chemo, has now dropped from 25 to 12 after second chemo. Encouraging news.

Sashay

SUE7777 profile image
SUE7777 in reply to Sashay2020

That's great news Sashay, unfortunately mine is going in the opposite direction 7,8 and now 15. Hoping it's down to inflammation. Stay safe. Sue xx

Sashay2020 profile image
Sashay2020 in reply to SUE7777

You stay safe, too and I hope your numbers reverse course soon.

Sashay

Iwillbeatit profile image
Iwillbeatit

Can't comment on lungs but avastin has worked may the moment on stopping growths on myntumours had 18 infusions over 12 months and 5 months since it stopped still stable. I am stage four b inoperable. Side effects aching stiff joints and sore bleeding nose so worth it. Good luck.

Sashay2020 profile image
Sashay2020 in reply to Iwillbeatit

Thanks for sharing your experience with Avastin. I value your response and you have given me a much needed shot of courage!

Best wishes from Louisiana

Sashay

Iwillbeatit profile image
Iwillbeatit in reply to Sashay2020

The side effects list frightened the hell out of me too as katmal says they have to warn you, but my husband said what have you got to lose and sounds like a chance of a big holding period which I have had so I would say go for it.

Rosewall101 profile image
Rosewall101

Hi Sashay. I did 6 carbo/ taxols in 2016. Then followed on with a year of avastin. It want easy but in no easy was it horrific like the chemo. Side effects could be treated and I managed ok. And the avastin got rid of a tumour that had spread to my liver. So I know it can work on metastasis. Good luck. Rosie.

Sashay2020 profile image
Sashay2020 in reply to Rosewall101

Thank you. Thank you, Rosie. I think I will have to take my chances with Avastin. I’m so glad you took the time to respond and tell me if your experience.

Best wishes from Louisiana

Sashay

Ruebacelle profile image
Ruebacelle

Not with lungs but i was on avastin lst w carbotaxol 3 times then avaston alone q4 more. It worked. No alcohol watch bp. Gooduck and hugs

Sashay2020 profile image
Sashay2020 in reply to Ruebacelle

Thanks, Ruebacelle. I already have high blood pressure and a monitor at home, so I will definitely keep an eye on that.

Best wishes from Louisiana

Sashay

JustKBO profile image
JustKBO

So gutting Sashay. Go with your onc advice. It’s different for everyone and you may not have horrific symptoms. We must try everything. Thinking of you.

Sashay2020 profile image
Sashay2020 in reply to JustKBO

Thanks so much KBO. I have received so many positive responses. Thanks for bolstering my courage.

Best wishes from Louisiana

Sashay

Luckyducky144 profile image
Luckyducky144

Hi Sashay! You’ve gotten such helpful responses already but I wanted to chime in and suggest going for it. I was on avastin during my chemo and now remain on it as part of my trial (I’ll max out at 22 infusions). I was very nervous to start avastin because of the possibility of perforated bowels, as my cancer had spread to my lower intestine at diagnosis. My onc explained to me that that side effect was extremely rare. I’m now very happy to be taking it, I think it’s keeping any recurrences at bay. My blood pressure is fine, but the neck pain from avastin is very intense. Yoga and exercise help a lot. Outside of that it doesn’t interfere at all with daily activities the way chemotherapy did. I feel like myself again now that chemo is done. Best of luck to you. xo, Casey, Brooklyn NY

Sashay2020 profile image
Sashay2020 in reply to Luckyducky144

Hello New York! 🍎 I’m so grateful for your comments. I just left my oncologist and we discussed it further. I have my third chemo tomorrow. I may start Avastin with fourth chemo. I have bone spurs in my neck and yoga worked wonders on them. Thanks so much for taking the time to share your experiences and thoughts on Avastin. So encouraging. I think I just have to go for it. Thanks again

Best wishes from Louisiana

Sashay

msuspartan profile image
msuspartan

Only thing, I can suggest is that try carrot juice adjuvent to your treatment. It has some positive effect on my mom. We got to know about it accidently but found some proof from others experiences. Actually, there is a book written on it by Ann Cameron.

amazon.com/Curing-Cancer-Ca...

Best wishes to you.

Sashay2020 profile image
Sashay2020 in reply to msuspartan

Hey there, Michigan State. Indiana University here. Boy do I miss those pre-Covid incredibly carefree (compared to now! Thanks for the carrot juice tip I will have a look at Ms. Cameron’s book. Thank you kindly for responding.

Best wishes from Louisiana

Sashay

msuspartan profile image
msuspartan

Hang in there, crazy thing about this disease is that no one talk about wholesome health rather focus on treatment peice only. I think a significant change in life style and carefully choosing our food can thrawt the progression. Another few things you want to consider is fermented wheat germ extract and kefir drink to minimize the side effects of treatments.

Sashay2020 profile image
Sashay2020 in reply to msuspartan

Yes. Seems like a holistic approach is the way to go. I have used wheat germ before but not fermented wheat germ. Food for thought!

Sashay

msuspartan profile image
msuspartan

Check out the company called Avemar for fermented wheat germ extract. They promote it as adjuvant treatment in Europe not so here..

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