peritoneal carcinomatosis
Comments
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Hey Sheri! When my abdominal mets were at their worst, Navelbine kicked it's butt! I had to go on 2 wks on and one week off because of side effects but once we figured out what worked for me, I did well on it for 4 months. Also, Halaven worked for me and would have been fine except for the neuropathy I developed. The good news is that it's going away so was temporary. I was on Halaven for 8 treatments. So sorry your markers are up and Ibrance didn't work for you. Wishing you the very best! Dear Janet! Wouldn't you think with everything we go through we wouldn't have to deal with weight issues? It's just not fair. I have lost weight recently between the virus and the Halaven. It seems like when our digestive systems start working again that we become ravenous. At least I do! I'm trying very hard to keep the weight at least tolerable but often feel like I don't really have much control. I remind myself that when the cancer kicks in again. it will be good if I have extra weight on me so I have something to lose. Hang in kid! Love to all of you, Cathy
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Thanks, Cathy, for your quick response. Did you lose your hair on the Halaven or the
Navelbine? Were you able to function kind-of normal throughout your treatments? Are you on chemo now? My oncologist did suggest the Halaven and also mentioned Doxil. I'm anxious to see if this Guardant 360 blood test gives me some good feedback.
I've just felt mostly normal on Xeloda and the Ibrance/Letrozole with manageable side effects for the past 1 1/2 years and have been able to avoid the chemo room (except for the port flush.) Just dreading going back to IV chemo again and all that goes with it. Brings back very bad memories for me. (It was when I was on the feeding tube throughout my IV chemo in 2014 and 2015.)
Thanks again and well wishes to all of you!0 -
Hi Sheri. I'm not one of those people when on chemo that feels like I can just live my life normally. I lived on the sofa during Halaven treatment (very tired) and just didn't feel very well on it ever. But it did work for me. I was having abdominal gas pain and vomiting. The symptoms stopped with the very 1st treatment of Halaven. Once my medication was given to me with a break weak off, I did very well on Navelbine. The last 2 mos. I was on it (once I quit having the cancer symptoms) I felt pretty good. I did have hair thinning with both. My Doc has to play around with dosages for me as I am pretty medicine sensitive. A little goes a long way with me. Keep us posted! Cathy
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Thanks, Cathy, for sharing your experiences. I shouldn't have used the word "normal" during my oral chemo and hormonal experiences as I can't say I was "normal" but I have been functional. That was certainly not the case when I've been on IV chemo. I'm usually a fixture on the couch or in my bed for awhile after chemo.
I finally feel decent again after I was so ill for such a long time and now the rug is being pulled from under me again! Ugh - I'm really not a happy camper right now. 😟
Cathy, did I tell you my brother used to live in Everett many years ago and now lives in Mukilteo? So beautiful up north where you live!0 -
That's funny Sheri! When we moved back from upstate NY, we lived in the Mukilteo area and just bought a house in North Everett a year and a half ago. Love it here so much. It really is beautiful! I have buds on my lilac bushes--can't wait for spring! It's a very small world. Hugs, Cathy
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Just finishing up my 2nd cycle of 100 mg. Ibrance and Faslodex. WOW am I tired! It really hit me in the last couple of days. The fatigue is amazing. Getting out and doing some shopping today and then I rest! Hope you are all having a great weekend. Hugs, Cathy
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Agree, Cathy - I've just finished my 4th (and last) cycle of 125mg Ibrance/Letrozole and really fatigue was my #1 side effect. I will say most days I felt quite good, and then one day I would get a wave of fatigue. I am really going to miss Ibrance - do not look forward to going back to IV chemo. Having mets to the stomach really adds a new dimension to the nausea chemo side effect! Ugh.
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Hi ladies, I am so glad I found this thread. I posted my questions on another thread and was guided to this one. I was diagnosed in 2011 with ILC. Had the usual chemo, surgery, chemo and radiation. Came back May 2015 when my belly looked like I was 6 months pregnant and so uncomfortable. CT scan found tumor on both ovaries and cells in the peritoneum. I was on Abraxane for almost a year with very few side effects but was getting a drain every week. In the beginning I was getting about 3 liters drawn off and it kept increasing to the point of 6 liters weekly. Dr finally got approval from insurance to start Avastin (that was a hard battle with insurance). Anyway after one treatment of Avastin the ascites dried up and I didn't get any more fluid for almost a year. Abraxane stopped working then insurance took away Avastin since the Abraxane stopped working. I have been on Ibrance, Xeloda and now Gemzar/Carbo combo. Pills just don't seem to work for me. The Gemzar/Carbo has a lot of side effects for me and I have only had 2 treatments because platelets get to low for a treatment.
My question is I would like to try Avastin again (drug company agreed to pay for it) but dr thinks it won't be as effective as first time around. It took away the ascites which is so uncomfortable. Has anyone else had a break from Avastin and gone back on it. What else has helped keep the ascites down for you.
Charlotte
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Welcome, Charlotte - glad you found this thread. There are not many of us with these stomach issues!
I can't speak to ascites as I haven't had it, but hoping someone here will chime in and offer some advice. I know Erica (rara avis) has ascites based on her posts but I don't know if she can speak to Avastin. I have been on many of the same treatments as you - Abraxane, gemzar/carbo, Xeloda, and Ibrance. Gemzar/carbo was a very difficult regimen for me. Now it was just determined that Ibrance has failed me, so now I will be going back to IV chemo in a few weeks after scans and tests are done. Not sure which meds yet. It seems I have heard of women going back to a chemo that they stopped, if it never actually failed them.
Sorry I can't be of further help to you, but please keep us updated on your decision and how you are doing. It's nice to be able to share information with those of us with similar diagnoses. Take care!0 -
Hi Charlotte,
So sorry you have to be here, but glad you found us! My oncologist's approach to ascites is to find a drug that lessens the cancer burden, which, in turn, should lessen the ascites. Adriamycin (doxorubicin) worked really well for me, but there's a lifetime dose limit, which I reached. Now I'm on Doxil, which is a less cardiotoxic form of doxorubicin, and I'm down from draining a liter a day to about 75-80 ml a day on average - I don't have to drain every day now. I was hoping it would go down to nothing so I could get rid of the PleurX catheter, but I don't think that's in the cards.
I've never been on Avastin. You've got me wondering if it would help me get rid of these lingering bits of ascites. However, from what I read on the web, it sounds like quite a strong and toxic drug. Also, it seems to be used mostly in conjunction with ovarian cancer. Were the tumors on your ovaries from the breast cancer? How did the treatment with Avastin affect you and how was it administered? If you want to get another treatment and your own doctor is discouraging, you might try getting a second opinion if you can find a heavy-hitter doctor whom you trust.
Also, you might ask about Adriamycin - maybe that drug would work for you the way it did for me. I was on a fairly low dose, apparently, and didn't have much in the way of side effects - some fatigue, but I was able to work full time while on it (with the help of afternoon naps!).
I, too, have scans at the end of this month. I just had my third dose of Doxil, and the cancer marker basically held steady and didn't go down as I'd hoped it would. The ascites increased slightly from 75ml/day to 80ml/day on average - I can go anywhere from 6-10 days without needing to drain. These days it's how much the dressing on the catheter insertion point irritates my skin that determines when I drain. I could probably go 2 weeks or more, but the tape holding the dressing eventually starts itching like crazy, so I drain the ascites and change the dressing, giving my skin some relief.
How much ascites are you accumulating these days? Are you back to needing to drain more than 3 liters a week?
Take care!
-Erica0 -
Well hello again everyone, I just thought I would provide an update following scans I had on Monday. I was diagnosed Stage IV in September last year with mets to the Omentum and bones. I originally had ILC in 2009. I have been on Exemestane and monthly Xgeva shots since September last year
Well the CT scan showed my mets to the Omentum are stable - great news! The bone scan showed there was no osteoblastic activity in my bones - again great news! Now I'm wondering if I ever had cancer in my bones or whether the Xgeva has done a wonderful job on my bones? A bit confusing but I'm hoping my Oncologist can explain this when I see her next tuesday. Do you think they will stop the Xgeva shots?
Anyway, just wanted to share my good news. Wishing you all the very best with wherever you are at on this trip we never wanted to take.
Cheers Judy
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Judy,
Stable mets is wonderful news - congrats! Thanks for sharing. Gives us all hope for ourselves and each other.
Hugs to all!0 -
Hey Judy! I would think that Xgeva will be a long term treatment. Not only does Xgeva help with the bones, it's also been found to help with the cancer in general. Look for recent articles on Xgeva. I get my shots every 3 mos. now. My bones from my breastbones to my hip joints were covered with cancer back in January 2012. I haven't had cancer show up in my bones since 2014 but I've never thought that meant the cancer couldn't come back there. I have to admit that the anti-estrogens that beat back the cancer can really make you feel bone and joint pain so it's a bit of a constant reminder. Wishing you all the best! HUGS, Cathy
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Erica,
Thanks for the information. I had already my life time dosage of Adraimycin, that was in 2011. I had 4.2 liters drained on Monday and that was down 2 liters from the previous Monday. Avastin worked really well for me with no side effects. I don't really want to have the catherer all the time. I am still working full time too and wish to continue that.
My onc sent biopsy to Foundation One but has not gotten back with me what the report says and it has been sitting on his desk for several weeks. I am to see his nurse practitioner on the 24th and I always get more information from her.
I hope you continue to keep getting less and less fluid. Thanks for your information.
Charlotte
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Thanks Cathy, you were spot on with your reply. The Xgeva shots are continuing. I saw the oncologist today and she said we are not messing with what's working. So I'm continuing with Exemestane and monthly Xgeva shots. The doctor said the average time for this combo to work is 12-18 months. I will take 18 months! So no scans for another 3 months. So quite happy with this outcome. Best wishes to everyone
Cheers Jud
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Great news, Judy! Very happy for you!0
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Hi Ladies,
I must admit I have been reading this board for about a month now and wanted to thank you all for sharing your stories. They have inspired hope and your experiences/descriptions of treatment have helped my mom and I in having people to relate to and also knowing what to expect. Praying for no progression and for you all to be feeling good.
My mom was originally diagnosed and treated in 2005 for both Stage II Breast Cancer and a seperate diagnosis of cervical cancer. After double mastectomy and radiation to the cervix and chest, she thankfully was NED for 10 years until she was diagnosed with triple negative breast cancer metastasis to the peritoneum with ascites in January of this year.
We took her to the hospital because she had nausea that was relentless; we thought it was the flu. They diagnosed the mets within a week, however she was in the hospital for about three weeks with poor kidney functioning (Nephrostomy bags inserted), not being able to eat, and got sepsis in the hospital. We are relieved to report she is home now, the sepsis has cleared, and she can eat, but her ascites are really uncomfortable and she has leg swelling. She hasn't yet started her chemo, as the doctors were waiting for improvement in her overall health.
Just wondering how soon after diagnosis did you begin to receive your treatments? My mom is a bit weak right now, which makes it even tougher to go through the chemo... in your experience were the first few weeks of chemo especially tough and then improvements were observed?
The chemo regimen prescribed is Adriamycin and Taxotere. Based off of many of your comments I'm glad to see that that this worked well for many of you (Erica, Charlotte)... but disappointed to learn that although it worked, there's a treatment limit.
What was your treatment regimen like on Adriamycin?
I see the limit is <550 mg/m²... my mom hasn't started yet but I think he said the treatment would be once per week? This is much less than her initial treatment, though I know the goal is to keep the disease stable and quality of life higher.
Thanks so much for your help.
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Dear Lovelylibra, Wow, your Mom has been through so much. So sorry she's been having such a tough road. I had Adriamycin/Cytoxan as my original chemo treatment at stage IIA. I just remember that it was hard but doable with infusion every 3 weeks. I would imagine how they use it for stage IV is different. I hope someone on this board can give you better information. Wishing your Mom and your family all the very best! Cathy
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Hi Lovelylibra,
So sorry to hear what's going on with your mom- so hard for her and for you! My dance with Adriamycin was monotherapy - just the Adria. I don't remember the dosage, but it was given weekly, administered from a syringe (not a drip) into my PICC line. It took about 15 minutes to push it in. For me, it was a piece of cake. Apparently Adriamycin can cause severe nausea, so the nurses and docs made sure I had lots of anti-nausea meds on hand. I never used any of them. I was recovering from an intestinal blockage and several weeks of not taking any nourishment by mouth. I was on TPN (intravenous nutrition), which kept me VERY well hydrated - maybe that and the fact that there was little or no food in the gastrointestinal tract helped keep nausea at bay.
When I started, I had a lot of ascites and a lot of edema. The Adriamycin helped with both of those dramatically. The other thing I learned was that protein intake was important for ameliorating both conditions. As I started taking more nourishment by mouth, I tried to make sure I got lots of protein. They upped the protein in the IV formulation, but I was told it was the protein that went through the gastrointestinal system that was important. Eggs, TPN, and Adriamycin got me through!
I sure hope the Adriamycin treats your mom well and she feels good again.
Take care,
Erica0 -
Hey Charlotte,
Hope you get good info on Friday. My Foundation One analysis said that I have a mutation that would be sensitive to Everolimus. I guess that means that if Doxil stops working, I get to go down the Everolimus/Exemestane trail. I had scans yesterday and my reading of them says that things are stable, but I won't hear my oncologist's take until next week. I am beginning to suffer from hand-foot syndrome, so even if the Doxil is working, I may have to change for quality of life reasons. grrrr.
Judy - so glad for your good news! How's the exemestane/Xgeva combo treating you? Is it bearable?
Wishing everyone on this thread lack of progression and comfortable, side-effect-free lives!
-Erica
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Hi Erica,
I have a list of questions for my dr on Friday. This Gemzar/Carbo combo has taken 3 weeks before I can actually eat a meal and I am still short of breath walking and also not taking any of the fluid off. I am thinking of seeking a second opinion. Sometimes I think he just strings me along until there is nothing left to offer. I have a full live to live and want to see my son get married and what career my daughter chooses. I am by no means ready to give up on this journey.
I am going to ask for a break to see if I can feel stronger. It will mean getting fluid drained once a week but I have been doing that for a month on this chemo and nothing has changed. Doctors can be so frustrating at times.
Good luck with the hand/foot syndrome. I hope it doesn't get to the point that it hurts to much to walk. I used udder cream and wore gloves so my hands wouldn't get wet. Also we started using paper plates and plastic utensils so there wouldn't be many dishes to wash. Unfortunately or fortunately however you look at it Xeloda stopped working after 3 months and the feet and hands improved quite rapidly. Good luck. I'm glad your scans showed stable and I hope your dr agrees with the results. Will be praying for you.
Charlotte
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Cathy and Erica, thank you so much for your detailed responses and well wishes.
Cathy- Hope that your fatigue is improving ... your "voice" on this board is so full of energy and positivity and you deserve that in your life as well.
Erica- what you endured sounds very similar to what my mom is going through with the ascites and edema. She was on intravenous nutrition for a bit in the hospital but only can eat small meals now because she has a full feeling from the ascites. I will be sharing your experience with her and hope it will be like yours; her last experience with chemo was difficult so she is a bit anxious at this time and I hope she will find comfort in the success of your experience. As for your current treatment, I'm glad to hear that your scans were stable but sorry to hear about you experiencing hand-foot syndrome. If you change over to Everolimus it brings relief and no progression.
Charlotte- Sorry to hear about the challenges you are facing with your doctor and treatment. You do deserve to see your daughter choose her career and your son get married. As someone who's getting married in August, that hits particularly close to home for me. Get the second opinion... I see you're in Virginia, there are two National Cancer Institute certified cancer centers there: University of Virginia Cancer Center (Charlottesville) and Massey Cancer Center of Virginia Commonwealth University (Richmond).
I have also been looking into Laparoscopic HIPEC (my mom is not open to regular HIPEC as it is too major of a surgery). The team at Mount Sinai would review my mom's case which we are hopeful about and there are a few promising studies documenting that it controls ascites very well in metastasis to the peritoneum... but it's still relatively new with few clinical trials to back it up; I've only found one for full HIPEC . If anyone has any experiences with this please do share.
Thanks again for your help ladies. I notice at the top that this is for patients only, my apologies; I will encourage my mom to join.
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Lovelylibra, you are welcome anytime. At this stage of our disease, we can all use all the love and support we can get! I'm sure you being involved in your Mom's care means everything to her and it helps if you have a better understanding of what she is going through. We bought a home in Everett with an apt so my daughter and her husband could live with us. She helps me so much and keeps me laughing. I couldn't get through this without her. We are so close though that I see the fear she is experiencing over losing me sooner than she would like. She teases me that she's having me stuffed so she can sit me on the sofa. My husband is wonderful but something really special about those mother/daughter relationships! HUGS, Cathy
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Just a note to tell you that I went from neuropathy to the noro virus to a major (the kind that gives you chills so bad you shake uncontrollably) UTI. When I'm not having chills, I'm having night sweats even during the day. What keeps me going? The promise of spring . I see my Doc today. Concerned that the antibiotic I'm on is causing G.I. pain. Being already sensitive (you know what I'm talking about), my abdominal area is just plain sore. My love to all of you. Hope you're having a wonderful day! HUGS, Cathy
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Erica I am doing so well on the Exemestane/Xgeva combo. I'm working full time, trying to swim and walk regularly. The only side effect I haxe - and I'm not sure which drug it's from - is hair loss. In addition to the hair loss, the hair I have left is sort of dead and lifeless, a bit like chemo hair. In the grand scheme of things this is nothing.. So this drug combo ( for me) is definitely doable. I had a power port put in a couple of weeks ago as the only viable vein in my arms was a small one on the back of my hand. The port is sometimes itchy and sometimes sore, but it's all good
Cheers
Judy
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P.S. Lovelibta - welcome and I do hope your mum is feeling better soon. I have read that the chemo can be a big help in reducing scutes, so I hope your mum gets relief soon. The ladies on here are a wonderful source of support and advic
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Thank you ladies for being so accepting and welcoming.
Cathy- hope you appointment with the doctor went well. Spring is coming!!! Cannot believe it's almost March! That is nice that your daughter is so close and that you both stay laughing
I'm getting married in August, so my lease is up in May/my sign on commitment to my current job has been met, so the plan is that I'm going to live home to be with my parents half the week and with my fiancé for the other half. (he lives in NY and I'm in NJ)Judy- Thanks so much; I agree you all have given such great advice. Glad that the Exemestane/Xgeva combination is going well for you.
My mom's chemo has been postponed to next Friday; it's been a little hectic/frustrating because she becomes Medicare eligible in March so insurance has been a bit of a battle because it's going to be switched over and the doctor wasn't going to start her on chemo with one insurance, only to switch it to another insurance a week later unfortuantely... but on a positive note this gives us an opportunity to see if she is eligible for laparoscopic HIPEC and to go to the NCI comprehensive care center to see if there are any clinical trials that would work for her.
Hope you all have a nice, symptom free weekend.
Tracey
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Tracey - a big welcome to you! I can tell you are a great advocate for your Mom. Everyone needs that. The women here have been so helpful sharing their experiences. Battling the insurance for chemo is difficult, but I truly don't think waiting a week or two should make a difference overall. As you said, gives you time to research some more.
Cathy - are you feeling better today? Was your doctor helpful?
Judy - you sound like you are doing so well. Working full-time and exercising- that is fantastic that you feel up to it. The power port has been great for me. My veins on my right arm are shot!
Charlotte - how was your Foundation One results? Any insight? I'm waiting for my Guardant 360 results to see which chemo is next up after Ibrance has failed me. Onc appointment on Monday.
Erica - I'm interested to hear about your ongoing Doxil experience, as that may be one I will be going on. I didn't realize Doxil causes hand-foot syndrome? I had that with Xeloda and it did get quite bad at the end.
Sorry if I missed anyone. My memory truly is not what it used to be. Chemo brain is definitely real to me.
Praying for each of you ladies!
Sheri
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Sheri,
My foundation one report only gave one treatment option Afinitor. Dr still didn't give me the report, nurse practitioner did. I'm very frustrated with my dr right now so I am seeking a second opinion. My blood counts were better after 3 weeks without gemzar/carbo but I'm so weak and short of breath I asked for another 3 weeks to get counts up more and feel stronger. I was on Avastin and it was working until the insurance decided to quit paying for it. I asked if I can go back on it and dr doesn't think it will be effective the second time. Right now gemzar/carbo is not effective because I cannot get a full treatment in due to blood counts being so low. Also said my options are becoming limited. Other than side effects of chemo I feel good and each day I'm getting stronger than I am not on chemo. CA-125 went from 110 to 308 in 6 weeks. I'm meeting with dr again in 3 weeks to see what my counts are like. This combo is not right for my body but he insists we keep trying it. Calling for another opinion on Monday.
How are you doing?
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Charlotte,
I had a very hard time with gemzar/carbo combo. I was extremely weak, although I was on a feeding tube at the time too, so hard to pinpoint exactly which was the problem. I did have to have blood transfusion of two units of blood when I was on it, so I know it kills your blood counts. It also didn't really work for me as TMs stayed high.
Yes, my options now are limited too after failing so many treatments, including Faslodex, Abraxane, Gemzar/Carbo, Xeloda, and now Ibrance/Letrozole. It is frustrating and disappointing. I did always think if you stopped a treatment prior to its failing that you could go back to it. Unfortunately, I don't even have those options. A second opinion is probably a great idea for you, although not sure how long it would take to get an appointment?
I'm thinking up next for me would be Halaven, Doxil or Navelbine. Don't know of any others. Navigation of cancerland really stinks! I'm sure disappointed to have to go back to IV chemo. Oral chemo and oral hormonal has been such a needed "break" for me (it's all relative, as Xeloda really wasn't easy.) I have spent so much time at my oncology center and have lost my hair twice so far. Not mentally ready to do it again but also not ready to give up on life.
Ladies- let's keep sharing our information, as I think we know our bodies and can offer suggestions to our oncologist. I have learned so much on this thread that I would never have known if I only used my doctor for information (even though I really like my onc and think he's very knowledgeable.)
Take care all,
Sheri
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