Doxil/Avastin after recurrence

Guitardiva · May 2017

Hi everyone, I'm new to this board.

I just started Doxil/Avastin for metastases to the retroperitoneal lymph nodes only five months after finishing carboplatin and Taxol. (I was only Stage IC at initial diagonsis but it is apparently quite aggressive.) I am interested in hearing how others have done with that regimen in terms of tolerating/side effects, and if it worked for you (that "progression free survival" thing). Of course, we are no longer looking for a cure, just "management" and I'm waiting to see just what that means.

Thanks!

Noelle

bettyboop3917 · May 2017

Guitardiva

Welcome to the board. Sorry you are having to be here. Under went 6 rounds of carboplatin and taxol for my cancer a agressive one also. It was 8 months and the cancer was back for me. The fight was on again as with you. I so get what you're going through and the unknown that goes with it. I am now under going IP chemo (The peritoneum is the membrane (thin tissue) that lines the abdominal cavity and surrounds your abdominal organs. Chemotherapy can be administered directly into this space to treat cancers of the abdominal region such as gastric (stomach), appendiceal (appendix) and ovarian). The doctors thought is in my case it will give me the best chance. I am told they think they can get me in remition but it will return.

Praying for you and a good out come.

Guitardiva · May 2017

bettyboop3917 said:
Guitardiva
Welcome to the board. Sorry you are having to be here. Under went 6 rounds of carboplatin and taxol for my cancer a agressive one also. It was 8 months and the cancer was back for me. The fight was on again as with you. I so get what you're going through and the unknown that goes with it. I am now under going IP chemo (The peritoneum is the membrane (thin tissue) that lines the abdominal cavity and surrounds your abdominal organs. Chemotherapy can be administered directly into this space to treat cancers of the abdominal region such as gastric (stomach), appendiceal (appendix) and ovarian). The doctors thought is in my case it will give me the best chance. I am told they think they can get me in remition but it will return.

Praying for you and a good out come.

Hi BettyBoop,

Hi BettyBoop,

Thanks for your reply! We are in pretty much the same spot, aren't we? I hope you are doing well with the IP chemo, I've heard it can be kind of rough for some people. My first treatment this week wasn't too bad other than fatigue. It could havebeen a lot worse.

I heard sort of the same thing as you did about prognosis; they can probably at least get it back under control but that they are no longer thinking they can eradicate it. They say they can "manage" it, but for how long and at what cost in terms of quality of life? I am trying to just take it one day/hour/minute at a time and focus on the present, but it's hard, isnt it?

Best wishes to you for a positive outcome as well. Please keep us posted on your progress.

Noelle

rejoycew · June 2017

I have just finished 10

I have just finished 10 months of 1 @ month IV doxil. I was told the max amount is a 550mg so I'm done. It was effective for me in that it stablized my CA 125 around the 150 mark and that I guess was a good thing The best part was minimal side effects and I have felt good and we had time inbetween for fun travel. What is next is the question that we, my medical team, and I are trying to fiqure out. Avastatin was not given along with my Doxil and I wonder why, as well as Dosxil was IV not IP. I know everyone is different and different treatments are given but questions are always there of is there a better way! I will raise these questions next meeting with oncology. This carcinomatosis of the peritoneal cavity is a tricky and persistemt thing. Blessings to you all.

Guitardiva · June 2017

I'm glad you did well with

I'm glad you did well with Doxil. I was told it was much easier to tolerate, but I have been having a worse time with Doxil/Avastin than I did with carboplatin and Taxol. More nausea, considerably more fatigue. I'm about to stop the entire chemo thing altogether. Going through this for the next six months is NO quality of life at all. I have a vague impression it might be the Avastin that's doing it, but my oncologist is so inaccessible, there is no one to ask.

I'm going to MD Anderson for a second opinion and maybe some straight answers, but I think I'm about done with chemo. At this point, it does not seem worth it.

Thanks.

Noelle

NoTimeForCancer · June 2017

Noelle, visitor from the

Noelle, visitor from the Uterine board here. Wanted to say if you can't get your oncologist and want answers - I agree with you to get a second opinion. You have to be your own advocate to PUSH for answers to your questions and concerns.

Guitardiva · June 2017

NoTimeForCancer said:
Noelle, visitor from the
Noelle, visitor from the Uterine board here. Wanted to say if you can't get your oncologist and want answers - I agree with you to get a second opinion. You have to be your own advocate to PUSH for answers to your questions and concerns.

Yeah, my oncologist has five

Yeah, my oncologist has five layers of minions that keep her inaccessible unless you have an appointment. And I am not liking the answers I am getting because they are vague. I get that as a surgeon, she is not going to have the best bedside manner, but if she is planning on chemo that is going to keep me sick until the bitter end, then at least have the respect for me as a patient to SAY SO. I also get that no one knows for sure how this is going to turn out, but she has to have a pretty good idea how it's going to go, having seen thousands of cases of ovarian cancer, she just isn't saying it. I'm a person who needs to know, upfront, no BS, tell me what is going to happen. At least I think it is easier than not knowing and imagining the worst (although this is turning even worse than I possibly could have imagined). If I only have 18 months or whatever, then I can figure out how to deal with that. Chemo forever, not so much.

It gets exhausting, though, sometimes. I don't have a lot of support.

So I booked my appt at MD Anderson on June 19. Hopefully these folks won't screw around with me.

Love your photo, BTW.

bettyboop3917 · June 2017

Guitardiva

I am happy to hear you are getting a second opinion. You have to be able to trust your doctor if you don't trust them then they need replaced.

You may want to keep going to chemo till you get the second opinion. I know how hard it is to keep going to chemo when your sick and just don't know if you want too. I just finished round 4 of 6 and it's hard for me to go. In fact my BP was high for the first time in years at my last chemo treatment do to knowing what was coming and just not wanting to be there. It seems to me that common sense tells us to run from things that hurt or make us sick. Chemo makes us sick so of course we don't want to go. We do it knowing that we will get better. However if you don't trust what your doctors are saying to you then it's hard to go to chemo and be made sick.

I wish you luck with what ever you decide to do.

rejoycew · June 2017

I do agree with a 2nd opinion

I do agree with a 2nd opinion. I hope you can easily get a hold of all your medical records to take with you. You have a right to have all of them! I did not have Avastin so that may have been the difference for me. Everyone is different I keep hearig. There certainly should be help for you to feel better. I do think you need to demand an ocologist who will respond to you. Have you thought of requesting for a change? I did request a change of oncologist when I felt I couldn't really relate to her and communication was poor. But then she was not my surgeon. I hope you have a supportive advocate that can fight with you, as all of this would be really hard to do when you are feeling sick. I am so sorry for your hopeless feeling which is certainly understandable when you feel badly. Positive optomistic attitudes help with healing and fighting this disease. These discussions groups have really helped me. I hope and pray that they will help you. Do keep us posted.

Guitardiva · June 2017

rejoycew said:
I do agree with a 2nd opinion
I do agree with a 2nd opinion. I hope you can easily get a hold of all your medical records to take with you. You have a right to have all of them! I did not have Avastin so that may have been the difference for me. Everyone is different I keep hearig. There certainly should be help for you to feel better. I do think you need to demand an ocologist who will respond to you. Have you thought of requesting for a change? I did request a change of oncologist when I felt I couldn't really relate to her and communication was poor. But then she was not my surgeon. I hope you have a supportive advocate that can fight with you, as all of this would be really hard to do when you are feeling sick. I am so sorry for your hopeless feeling which is certainly understandable when you feel badly. Positive optomistic attitudes help with healing and fighting this disease. These discussions groups have really helped me. I hope and pray that they will help you. Do keep us posted.

MD Anderson actually takes

MD Anderson actually takes care of all of the records, including the original slides so they can look at the actual cells from both the original tumor and a second lymph node biopsy they just did a couple weeks ago. So far they have been super nice and making it easy. They even have their own hotel right next to the hospital for patients and family only, and they do lots of little things you wouldn't just for regular hotel guests. I guess people stay there for weeks while getting treatment. I have no idea how they afford it.

I had a long argument with the nurse navigator here at home on Friday because I want to cancel the Avastin on Tuesday so I can try to have the strength to go to Houston and she gave me no end of grief, assuring me the Avastin should cause absolutely no problems (which is not what I remember the doctor saying; I thought she said that it can be the more problematic of the two and if it was, we would just skip it) and pressuring me to do the infusion. Since I had two drugs last week, there is no way to know which one made me sick and I am not taking the chance of not getting on the plane. (I'm worried about the trip because once you are on that plane, you are STUCK.) It's a big deal to make this trip (kind of life and death, actually); my boss even gave up frequent flyer points to pay for the plane ticket. So I'm not taking a chance.

Besides, if there are planning on 12 treatments of the Avastin, is missing one really going to make a difference? Seems unlikely.

More pressure is not what I need right now. I do need to change doctors; she is the surgeon but there is not going to be any more surgery. It's spread all through the lymph nodes now. I'm not sure the others at UNM are going to be any better, and options are otherwise very, very limited in New Mexico. Our cancer center is actually NCI designated, but my impression is that that brings in research money, it doesn't necessarily improve patient relations.

It just seems sometimes like people are going out of their way to make this harder than it already is.

Thanks for your prayers.

Guitardiva · June 2017

bettyboop3917 said:
Guitardiva
I am happy to hear you are getting a second opinion. You have to be able to trust your doctor if you don't trust them then they need replaced.

You may want to keep going to chemo till you get the second opinion. I know how hard it is to keep going to chemo when your sick and just don't know if you want too. I just finished round 4 of 6 and it's hard for me to go. In fact my BP was high for the first time in years at my last chemo treatment do to knowing what was coming and just not wanting to be there. It seems to me that common sense tells us to run from things that hurt or make us sick. Chemo makes us sick so of course we don't want to go. We do it knowing that we will get better. However if you don't trust what your doctors are saying to you then it's hard to go to chemo and be made sick.

I wish you luck with what ever you decide to do.

I did chemo once because they

I did chemo once because they thought I had a good chance of cure; Stage IC and my CA-125 dropped to 6 after the first treatment and stayed there the entire time. But I just don't have the emotional wherewithal to go through any more. My life is such that it diminishes the quality of life to such a low point that it doesn't seem worth it right now for a few months of "progression free survival." Man, I hate that phrase.

rejoycew · June 2017

I am so sorry for the

I am so sorry for the problems you have faced. Stress and problems are not what you need. . Your medical treatment should be directed by you not a nurse. Advice from an oncologist yes, but the decision should be yours without an arguement from anyone. You know your body better than anyone else. A good quality of life is the goal for all of us. Hope, support and optimism are among the many positve prayers coming your way as well as traveling mercies.

rejoycew · June 2017

I am so sorry for the

I am so sorry for the problems you have faced. Stress and problems are not what you need. . Your medical treatment should be directed by you not a nurse. Advice from an oncologist yes, but the decision should be yours without an arguement from anyone. You know your body better than anyone else. A good quality of life is the goal for all of us. Hope, support and optimism are among the many positve prayers coming your way as well as traveling mercies.

Guitardiva · June 2017

rejoycew said:
I am so sorry for the
I am so sorry for the problems you have faced. Stress and problems are not what you need. . Your medical treatment should be directed by you not a nurse. Advice from an oncologist yes, but the decision should be yours without an arguement from anyone. You know your body better than anyone else. A good quality of life is the goal for all of us. Hope, support and optimism are among the many positve prayers coming your way as well as traveling mercies.

Thank you so much for all of

Thank you so much for all of the above.

The anxiety is going to kill me before the cancer, at this rate. I don't normally have problems being assertive (so say a lot of people, sometimes with rolled eyes) but I'm so overwhelmed by the circumstances I have become unrecognizable. I sent an email saying I was canceling and tomorrow I'm just going to turn off my phone.

ancastanescu · July 2017

Guitardiva said:
Thank you so much for all of
Thank you so much for all of the above.

The anxiety is going to kill me before the cancer, at this rate. I don't normally have problems being assertive (so say a lot of people, sometimes with rolled eyes) but I'm so overwhelmed by the circumstances I have become unrecognizable. I sent an email saying I was canceling and tomorrow I'm just going to turn off my phone.

Hello, My mother is also

Hello, My mother is also doing chemotherapy with the same chemotherapy substance from Doxil, but the brand is Caelyx here in Europe. She is having a hard time, she is tired all the time, she can not drink or eat well, that is why we did Vitamin C IV (intravenous) and Magnesium IV and she is better now. My mom also did Avastin for a few months in combination with Gemzar and she was feeling well, but after 3 months Avastin stopped working, she changed multiple chemotherapies and is now doing Caelyx, the same as Doxil but it is the brand we have in Europe. So I think Doxil is what makes you feel so bad and not Avastin. How are you feeling now? Keep feeling optimistic, God will help you.

Guitardiva · July 2017

I have actually just stopped

I have actually just stopped both Doxil and Avastin after a bout of pancreatitis and bad blistering on my hands. They thinkk the Avastin caused the pancreatitis and possibly the diverticulitis I got before that. I have been nothing but sick on this regimen, unable to eat, losing too much weight, crushing fatigue, so now we are going to try Gemzar. And it wasn't helping anyway, the last CT showed new mets on the liver.

I continue to seriously think about giving up on chemo altogether and living better with whatever time I have left.

amartin · September 2017

Doxil side effects

Shortly after my diagnosis I took the standard chemo for ovarian cancer (although mine, technically, is primary peritoneal). After that I did great for about a year and a half on hormone therapy to stabilize the gains made in chemo. Then I had big surgery last March and began the Doxil/Avastin therapy a couple of months ago. We had to postpone Avastin for six weeks because I developed an abscessed tooth, and Avastin interferes with healing. It is the Doxil that is giving me fits. I have had two treatments and am scheduled for a third later this month. The palms of my hands and soles of my feet are so blistered that I can barely walk or use my hands for routine activities. My mouth is sore and I'm having difficulty swallowing. The inside of my nose is a bloody mess. What I need to know from others is whether the side effects of Doxil just continue to get worse as therapy progresses. If so, I will reject any further treatment with Doxil, as quality of life is my top priority. I know that stopping Doxil after only two treatments will probably negate any gains I have made. But I am not willing to get worse on this regimen. Any thoughts?

LorettaMarshall · September 2017

Amartin~Agree w/u "Quality of Life" has 2B taken N2 acct

Dear AMartin:

Would I be correct in assuming that you have had Cytoreductive Surgery? You have written on both the Peritoneal and Ovarian links. Often oncologists will say, “We have other tools in our box that we can use!” You might want to ask if your doc has anything else in his/her “tool box”! You’re not the first one that has had adverse side effects with the use of DOXIL…sore mouth, blisters on feet till they can’t walk, skin peeling on fingers, etc. Those are symptoms that several have expressed here. I’ve just mentioned a few of late that are “suffering” side effects from Doxil. And Avastin doesn’t have a 5-Star rating either!

“Guitardiva” has had her share of both Doxil and Avastin – Below are a few comments from ladies here about the effects of Avastin/Doxil as well as some medical info from clinical trials.

My chemo combo of Carboplatin/Paclitaxel (Taxol) has had good effects in affording me some extra time, but none were ever intended to be curative. My last CT scan on September 5, 2017 shows a gradual increase in the size of previous nodes, more pleural effusion, new node on Caudate lobe of liver, plus other things. My oncologist gave me a list of other “tools” we could “try”, plus some clinical trials. He mentioned both Doxil and Avastin. Based on what my “OC sisters” are suffering from those two “tools”, I threw up my hands and said, “No way!” And if Doxil/Avastin haven’t worked out so well for many others, then why do I want to jump in? My oncologist explained to me that all the other choices fall in line below the standard recommended treatment for both Peritoneal and Ovarian Cancer which is Carboplatin/Paclitaxel (Taxol). Now we know that some are resistant to the “platin” family, and have to try something else. But for the most part, clinical trials have shown that the Carbo/Taxol regimen has worked well for the highest number of women diagnosed with Ovarian Cancer. He also explained that the others would carry with it a higher level of toxicity for me. He gave me a list of about 8 options.

So that’s where I find myself. Out on a limb and not certain what to do next. So for now, I’m just “waiting” because I’m not happy about any of the choices. And I may just opt for some immunotherapy trial—after all, aren’t they all in essence just that—TRIALS?

The old expression, “I’d rather dance with the devil that I do know rather than with the one I don’t know” applies here for me. Since I’m in the “guinea pig” category anyway, I’d just as soon climb out on another limb. But there again, how many pigs survive when they attempt to climb a tree, and go out on a limb? That’s how I feel as far as “which tool, if any at all, should I choose?” I don’t consider myself a fatalist, just a realist. It’s just that I’m not fond of any of the “choices” that I am free to make.

However, as a woman of faith, I do agree with the Psalmist David’s sentiments in Psalm 139. I firmly believe in an omniscient, omnipresent and omnipotent God Who watches over me. I am convinced that I will not die one day sooner than the number of days allotted to me on this earth. Further, I am grateful for the days afforded me so far since being diagnosed with Peritoneal Carcinomatosis/Ovarian Cancer in November & December of 2012. It has not been without many “trials”. But when I last checked the definition of “terminal”, it did indicate a cessation of activities at some point. My ultimate destination is Heaven, so why should I expect “Heaven on Earth?” I am constantly praying that the Lord will lay on my heart which decision to make, as well as guide my oncologist in advising me along the way.

I absolutely agree with you that “Quality of Life” takes priority over “Quantity of Life.” All the while remembering that… “Life isn’t about waiting for the storm to pass—It’s about learning how to dance in the rain.” Now that’s not to say that I voluntarily signed up for this course. I do find the slippers pinch my toes quite often!

Loretta

____________________________________________________________________

1. https://csn.cancer.org/comment/1589259#comment-1589259 “Guitardiva” stopping Doxil/Avastin because of such severe side effects

2. https://csn.cancer.org/node/310562 - Pattie asking about Doxil/Avastin

3. https://csn.cancer.org/node/311458 - advantages vs. Disadvantages of AVASTIN

4. https://csn.cancer.org/comment/1590482#comment-1590482 – Severe blistering

5. https://csn.cancer.org/node/206203 Carole’s experience with Avastin

_______________________________________________________

6. http://www.webmd.com/cancer/cervical-cancer/news/20140219/avastin-shows-mixed-results-against-different-cancers?page=2

“Avastin: Mixed Results against Different Cancers…”

____________________________________

7. http://www.medpagetoday.com/MeetingCoverage/SGO/50720?xid=nl_mpt_DHE_2015-03-31&eun=g67937d0r&userid=67937&mu_id=5067363

“Meeting Coverage 03.30.2015”

“MIXED RESULTS FOR AVASTIN PLUS CHEMO IN OVARIAN CANCER

Regimen improves survival but study misses cutoff for statistical significance… Patients who received carboplatin, paclitaxel, and bevacizumab had a median overall survival (OS) of 42.2 months compared with 37.3 months for platinum-taxane doublet. Nonetheless, the 5-month difference just missed the trial's cutoff for statistical significance (P=0.056 versus P=0.05)…

"Paclitaxel plus carboplatin and bevacizumab extended overall survival in patients with platinum-sensitive recurrent ovarian cancer, but the difference did not reach statistical significance," said Robert L. Coleman, MD, of the MD Anderson Cancer Center in Houston. "The combination was associated with a significant improvement in progression-free survival."

Adverse events occurred more frequently with bevacizumab, including grade 3-plus thromboembolism (4% versus 1%),

Infection (13% versus 6%),

Hypertension (12% versus 1%),

And proteinuria (8% versus 0%).

Gastrointestinal perforation, fistula, or abscess (all grades) also occurred more often in the bevacizumab arm (15% versus 4%).

In general, a quality-of-life assessment showed no deterioration of life quality in patients randomized to bevacizumab.

Adverse events of special interest occurred with similar frequency in the two arms: allergy/hypersensitivity reaction (27% with bevacizumab, 25% without),

all-cause mortality (2.4% versus 0.6%), and deaths possibly related to study treatment (2% overall)… The GOG213 trial was supported by the National Cancer Institute.”

__________________________________________________________________

8. http://www.medpagetoday.com/clinical-context/GynecologicCancers/56872

cme/ce Clinical Context 03.22.2016

“SGO: Optimal Chemo for Ovarian Cancer Fails to Emerge

No PFS difference among three regimens evaluated in key trial

by Charles Bankhead - Staff Writer, MedPage Today

Action Points

Note that these studies were published as abstracts and presented at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.
Results of a long-awaited ovarian cancer trial failed to show an advantage for any of three chemotherapy regimens.
Note that the regimens -- involving combinations of intraperitoneal (IP) and intravenous (IV) chemotherapy plus bevacizumab (Avastin) -- led to a median progression-free survival of 27 to 29 months in patients with optimally debulked stage II-III disease.

SAN DIEGO -- A roomful of gynecologic oncologists walked away disappointed after results of a long-awaited ovarian cancer trial failed to show an advantage for any of three chemotherapy regimens.

The regimens -- involving combinations of intraperitoneal (IP) and intravenous (IV) chemotherapy plus bevacizumab (Avastin) -- led to a median progression-free survival (PFS) of 27 to 29 months in patients with optimally debulked stage II-III disease.

An analysis limited to patients with optimal stage III disease yielded median PFS values of 31 to 34 months.

The results were a far cry from the 60-month median PFS in optimally debulked patients achieved with a higher dose of IP cisplatin in the Gynecologic Oncology Group (GOG) 172 trial reported more than a decade ago, and the three regimens' median PFS values remained similar to the 24-month median for all patients in GOG 172.

Moreover, toxicity remained a problem, although not nearly as severe as what was observed in GOG 172, reported Joan L. Walker, MD, of Oklahoma University's Stephenson Cancer Center in Oklahoma City, here at the Society of Gynecologic Oncology meeting…”

______________End of selected references ________________________

Mstuart76 · November 2017

Guitardiva said:
I'm glad you did well with
I'm glad you did well with Doxil. I was told it was much easier to tolerate, but I have been having a worse time with Doxil/Avastin than I did with carboplatin and Taxol. More nausea, considerably more fatigue. I'm about to stop the entire chemo thing altogether. Going through this for the next six months is NO quality of life at all. I have a vague impression it might be the Avastin that's doing it, but my oncologist is so inaccessible, there is no one to ask.

I'm going to MD Anderson for a second opinion and maybe some straight answers, but I think I'm about done with chemo. At this point, it does not seem worth it.

Thanks.

Noelle

Noelle,

Noelle,

Is there an update? It might have been the avastin... I’m so sorry to read that your oncologist was inaccessible. I feel very frustrated with my doctor. And I’m trying to build up the psychological strength to make a switch.

Prayers and best wishes.

Jacjac2 · January 2018

Doxil and Avastin

doxil literally burned my upper body and now starting Avastin today for Uterinr cancer. MDA doctor told me Doxil fir rest of my life. local doctor putting me on Avastin. I plan to return to MDA show them pictures and get even more opinions. Feels they don’t know what to do with me.

Deb17 · February 2018

Jacjac2 said:
Doxil and Avastin
doxil literally burned my upper body and now starting Avastin today for Uterinr cancer. MDA doctor told me Doxil fir rest of my life. local doctor putting me on Avastin. I plan to return to MDA show them pictures and get even more opinions. Feels they don’t know what to do with me.

Me too

i also was diagnosed with uterine cancer, Stage IVb. I had 18 weeks of carbo and taxol. I just started doxil and I admit I don’t know what to expect. They’ll be adding avastin next month. I hope and pray they can help you.

Doxil/Avastin after recurrence

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