peritoneal carcinomatosis
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Barb, thanks for the update. Great to hear from you. I wanted to tell you that Halaven worked for me for a year and I managed pretty well on it. Honestly, I hated to have to stop it but, as usual, I had progression at that time. I pray you have much success on this and I hope you will find the side effects less severe than Doxil.
I understand it's so tricky about the surgical options. Great point about wanting the oral options though in the future, as there are several of them. I continue to find that whatever chemo I'm on, regardless if it reduces the cancer cells in my stomach and my TMs, no chemo has reduced the actual blockage. It's like I just have tissue growth for the blockage that doesn't ever shrink. I would even consider getting a 3rd opinion from a surgical oncologist that specifically operates on digestive blockages. My surgeon actually mostly operated on pancreatic cancer blockages. No surgery may be your best answer but always nice to know all your options. I just found this whole stomach blockage so difficult, as most doctors I saw really never had much familiarity with it.
Enerva, I was rereading your post again and was wondering how you knew your cancer doesn't respond to chemo? Was that info from Foundation One testing? Since your cancer is highly ER+, it seems like some chemo would work. There are so many chemos for ER+ breast cancer - I've been on most all of them! Praying your scan results are good. Boy - this cancer stuff truly makes my head spin.
Hang in there, ladies. I enjoy hearing how each of you are doing and continue to learn from each of you. I find that my MO only knows so much and we all are actually living with it!
Hugs💕
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Hi all -
Missing everyone tonight. I want to ensure our group keeps posting in this thread if we possibly can. You all are such great support!
I started my off-chemo week on Friday so I’m feeling OK except my back still really hurts. I feel like the radiation to my spine (that about killed me) has done nothing for my back pain. I have an appointment with my MO on Friday before my chemo and will discuss it with him. I’m very frustrated to say the least. Hate to take a lot of pain meds, so I’ve been limiting myself to taking them once a day, but then my pain limits me from doing much activity. Ugh.
Take care of yourselves, friends. 💗
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hi all,
Barb, wishing you a good outcome with the new treatment.
Souththersurvivor, I was given strong regime of chemo for 6 months back in 2012. And my tumor grew instead of shrinking now this is the same type of tumors according to the pathology which was done this past year when they did a surgery to remove a large tumor that was blocking my right ovary and right kidney.
I had an US Las Wednesday, I just could not deal with the pain. My family dr order an US.
It turns out my left kidney is in trouble now and also my liver. I am to wait till Tuesday now to get the results of my ct scan which was done on the 17th, I went to my oncologist on Wednesday begging them to see me but was told the results were no ready yet and to go back on the 29th.
A way at least my family dr called me and said to go see her this morning cuz she got blood results and I bet is no so good other wise she never calls me. It is -16 here in Toronto i am getting ready to go get the blood results but even though o feel no so good k am sick of been in bed.
Sending you all hugs.
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Hi Southern.
I hear you on the bone pain. I was so happy that things seemed to be holding with Faslodex but, once again, my hip is giving me grief. It's not unbearable but definitely impacting my QOL. Find I have to give myself a bit of a pep talk, girding my loins before walking the dog. (You know... that dog needs to be walked a LOT! Ouch!) I'm also not getting a ton of sleep as I wake up through the night and then the throbbing pain makes it hard to go back to sleep again. I've had one zap to that area but it may be time for another... dang.
Has anyone heard from Cathy? Or Dianarose?
Hope things improve for everyone. We all seem to be going through the wars at the moment.
Pat
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Oh Enerva, I’m so wishing you good results for both your bloodwork and CT scan. Waiting is so hard - ugh. Stay warm too. -16 is ridiculously cold. My parents live in South Dakota (where I went to high school too) and I can’t handle that cold weather, never could get used to it.
Pat, sorry about your pain. It is miserable and affects everything you try to do. What do you take for your pain? I take Dilaudid, but I limit it to once a day, which lasts about 4 hours. Sometimes I make it until evening before I take it but sometimes it’s 9am. I’m going to talk to MO on Friday about any other options. I swear - I’m finally adjusting to the chemo and now it’s my back.
I haven’t heard anything from Cathy. I’m very worried about her as I know she would post (or have someone post for her) if she could. She loved all the women on this thread. I feel like I know her but don’t even know her last name or another way to reach out to her!
I last heard from Dianarose a week ago. She is in hospice in her home but said wasn’t given long by her doctors. She has a wonderful DH and family support. I miss our daily texts. Seems to me many times the New Year brings us heartache, as everyone wants to make it through Christmas, and we seem to will our bodies to make it to that point if at all possible. Praying for each of us today. Living with MBC is so hard for us and our caretakers.
Take care, ladies. Much love 💕
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My pain is not that bad, more an annoyance most of the time. The funny thing is with the hip/groin pain there is referred pain that feels like a vaginal tear. Not a very comfortable sensation. Funnily, this was very pronounced when I had the radiation - it was immediate and made me wonder if I was going to be able to get back to my car but thankfully it eased a bit.
In terms of meds, I'm taking Tramacet (weaker version of Tramadol). Like you, I try to keep it to just once a day (in the morning when I am most stiff/sore). I keep hoping I will be able to drop it but then something else crops up. Awhile back, when I tried to stop, the pain in my midsection went bonkers. I decided it wasn't worth it.
Hugs to all. Pat
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it’s nice to see everyone posting again but sad to see all of the issues everyone is going through. Pain is so debilitating. I was in constant pain with my blisters and needed to take pain meds. They are finally better and I’m working my way up to walking more again. Today was especially nice as there were a lot of birds playing and singing everwhere.
Enerva I am wishing you good results from your scan and bloodwork. It does seem like you’ve had to wait a long time for the CT results.
So far I am doing ok with Halaven. My neutrophils are down quite a bit, and I’ve had a couple of fatigue and slightly queasy days but otherwise have felt ok. I am, however, getting quite tired of the feeding tube. I try to keep positive reminding myself that it is what enables me to get nutrition to live but I’d sure like to be able to eat normally again. I’m going to make an appointment with a general surgeon they want me to see about getting a different type of tube in the future and will ask her for a referral to a specialist for a 2nd opinion on other surgical options.
Love and hugs
Barb
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hi all ,
hoping for better days for all of us
I had a long and hard day yesterday and wanted to share my results with you all.
Also my oncologist is asking me to stop taking letrozole now and start taking the below 2 drugs.
EXEMESTANE(Aromasin)
For treatment of hormone sensitive breast cancer in woman after menopause.
EVEROLIMUS (Afinitor)
For treatment of certain types of kidney and breast cancer, or other cancers that come from the pancreas,lung or stomach (neuroendocrine tumors)
What I dont understand is why do they have to be taken together?
Like my oncologist says I cant take one or the other they must be taken together. One is very expensive and the other one is not.
Huge document on side effects too.
I must investigate this today
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Hi Enerva, sorry you had such a difficult day yesterday. I don’t know a lot about these two drugs but I know it is an approved combination. I did take Exemestane by itself for several years when I was in remission before my cancer came back Stage IV. I don’t think Exemestane is normally taken by itself once your cancer comes back and you are Stage IV (unless you become NED in Stage IV.) Need something stronger to fight the cancer, which I think what the Afinitor will do. Afinitor is one of the only drugs I have yet to take, so I don’t have any experience with that. I do know there is a whole thread called “Afinitor/Aromasin 2013” that is quite active. Hoping you can find some answers there.
Barb, thanks for the update. So glad your blisters have healed and you can get back to walking and hearing the birds sing. I’m hoping the Halaven will get better with time. I definitely found the first few rounds the worst as my body tried to adjust to Halaven. Good for you for being your own best advocate and pursuing feeding tube options. I’ll never forget seeing my surgeon for the first consult after being on the feeding tube for 7 months and he said, “Where have you been?” as if I had been hiding. It’s a matter of finding the right surgeon who has experience with this stuff, and I swear there aren’t many.
Pat, thanks for the pain med info. For now, I’ll continue at once a day until I can talk to my MO later this week. I’ve been having pain in the top of my right leg and I’m so concerned that my bone mets are spreading. Ugh.
Hugs to all - take care of yourselves!
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southernsurvivor, hope you are doing ok today
That is for the tread info. I will look for it.
It turned out that drug cost $7,201.39 so I am not sure I will be on it. The hospital will let me know if they get me on a trial.
Thanks again
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It is with great sadness to tell you Dianarose passed away yesterday morning. I miss her so much already. She was such a vibrant, funny, kind, and compassionate woman. She loved her family and friends with all her heart and would do anything to help another BCO sister. I know she is an angel in heaven now. Love you, DR! 💕
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Hi Southern,
I'm so sorry to hear this. I wasn't fortunate enough to have known Dianarose well (I recall she was going through a bad patch when I first joined BCO two years ago) but know she was loved by many on this site. Rest well Dianarose.
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I am so sad to hear about Dianarose. She was such a brave and compassionate woman and will be missed. Rest In Peace Dianarose.
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I am so sad to hear this. Dianarose was kind and generous. I only "met" her last summer, but we developed a fast email friendship.
I hadn't heard from her since shortly after Christmas and knew things were dire. But it's always gut wrenching to hear the news that someone we "know" on these sites has died.
Be at peace, sweet soul.
Elizabeth
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Hi - I wanted to check in with you gals. How is everyone?
I'm just starting my off-chemo week, thank goodness! Last Friday in addition to chemo, I had my first Zometa infusion for my bone mets. Had a fever of almost 102 degrees most of the weekend. It's a good thing for this forum and for the internet, as my MO didn't warn me about the fact that flu-like symptoms are common with the first Zometa infusion. I had a terrible headache too, which is very unusual for me. I don't like being surprised! If I hadn't been aware of this, I would have been much more worried. Ugh. Then last night I actually threw up my dinner and had terrible D in the middle of the night and this morning. So bad that there was a ton of water just coming out. I don't think it was the food that I had eaten and was wondering if it related to the Zometa?? So hard to start new drugs!
Looking forward to hearing updates on everyone. Take care and Happy Valentine's Day!
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Hi to all. I had my appointment with my oncologist today prior to my 4th Halaven infusion tomorrow. It was an interesting appointment because after asking if I’d noticed any less drainage in my drain tube (I have not) she said for the first time that the success rate of chemo eliminating blockages like mine is very low, even if the chemo controls progression of the cancer. Part of the reason is that scar tissue is also created. Anyway this led to discussion about potential surgical options and she initiated contact with a gastric surgeon specialist to hopefully refer me for consult. Sheri knowing your history helped me push for this. She is still not sure I will be a candidate for surgery but at least we have started the process to explore it.
Halaven is going ok so far. I had a fair amount of fatigue the past week but otherwise no major side effects. Some of the fatigue may be due to the rainy weather and a bit of sinus congestion.
Love and hugs to all!
Barb
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I finally have some decent news to report. After almost three months of continuous infections, pleural effusions, having to use oxygen and various aids for every day survival I am happy to report that my fulverstant injections are working. I no longer have fluid in my belly and my lungs are clear. The fluid around the lungs was tested and is not cancerous. After getting a blood transfusion my oxygen levels are normal and I no longer drag a tank around.
I feel decent so hubby and I are taking a mini vacation next weekend. We are going to Toronto to see Come From Away. We are also going to drive to our winter home in Florida mid March and from there we booked a cruise to the Caribbean with some friends.
I believe we need to take full advantage of our feel decent times as best we could. Who knows when the next blow will strike and we are again flat on our backs?
Kiwi I don't know whereyour drain tube is but I have two tubes installed in my kidneys for urine drainage. It looks like the left one is clearing up but the right remains blocked. I also asked about surgery but unfortunate for me it is not an option.
Southern Survivor, I hope you are feeling better and your D is resolved.
All the best to everyone.
Marina
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I finally have some decent news to report. After almost three months of continuous infections, pleural effusions, having to use oxygen and various aids for every day survival I am happy to report that my fulverstant injections are working. I no longer have fluid in my belly and my lungs are clear. The fluid around the lungs was tested and is not cancerous. After getting a blood transfusion my oxygen levels are normal and I no longer drag a tank around.
I feel decent so hubby and I are taking a mini vacation next weekend. We are going to Toronto to see Come From Away. We are also going to drive to to our winter home in Florida mid March and from there we booked a cruise to the Caribbean with some friends.
I believe we need to take full advantage of our feel decent times as best we could. Who knows when the next blow will strike and we are again flat on our backs.
Kiwi I don’t know here your drain tube is but I have two tubes installed in my kidneys for urine drainage. It looks like the left one is clearing up but the right remains blocked. I also asked about surgery but unfortunate for me it is not an option.
Southern Survivor, I hope you are feeling better and your D is resolved.
All the best to everyone.
Marina
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Hello to all you lovely ladies!
Barb - so happy to hear you had that conversation with your MO. What she said makes sense, that even if chemo controls the cancer progression, it doesn’t seem to lessen the blockage. I think that was (and still somewhat is except for controlling the progression part) my situation - the tissue causing the blockage never has receded. It must be common trait with ILC. I just wanted to clarify too that the surgery that they did on me was not to reduce the blockage. Surgeon said that wouldn’t work as there was too much tissue involvement. The surgeon created a bypass and moved my intestines from my right side to the left side to allow my stomach contents to move into the intestines via a new path, thus completely avoiding the blocked duodenum. Good luck - keep pressing them for solutions. Also, you are doing well with Halaven, which is so great!
Marina - LOVED hearing your news!! That is so awesome! Thanks so much for sharing this with us, as I really needed to hear good news today. You are exactly right to take advantage when you feel decent, as you never know how long those times will last. An upcoming Caribbean cruise sounds so wonderful too.
Well, my terrible D has not gone away yet and I’m so wiped out! I’m on meds and thinking I may be a bit better, but not a whole lot. Today is Day 4 of the big D and it’s certainly getting old. I also have little appetite, so I’m pretty weak. Thinking I must have some virus, as I don’t have a fever. I did go into cancer center on Friday for fluids and lab work, as we were worried about my potassium level again with all the D. Potassium level wasn’t too bad but I did get some with fluids, but my neutrophils (ANC) were really low at .5. (Total WBC was 1.3) PA was really concerned about the neutrophils. She wanted to give me a Neulasta shot but I refused. I could not handle the bone aches it causes - already felt too bad. So, she put me on an antibiotic to ensure any bacterial infection would be taken care of. Bottom line: I’ve been on the couch the entire weekend.
Hope y’all are faring better this Sunday. This is my off-chemo week and I was really looking forward to feeling better. I should know by now that you never know when the other shoe will drop. Take care! 💕
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Heartburns as a sign of progression?
My mother's mets were found 8 years ago on one ovary. The removed both ovaries and tubes and has been on Aromasin since them.
Her cancer is lobular and It tends to go to the abdominal area. She has complainted about having heartburns after eatind. At least three times in the last week.
I am concerned the cancer has progressed to the stomach ir liver or I don't know. Her last checkup was in October but lobular does not always show on scans and that It why i always trust the way she feels
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Hi Alicia, welcome to our group! I’m glad you found us, although sorry to hear of your mother’s issues.
I have invasive lobular cancer and I wouldn’t necessarily say heartburn has to be a sign of progression. I have stomach mets with a 100% blocked duodenum. When I’ve had progression, sometimes I’ve had heartburn and sometimes I haven’t. I did have terrible acid reflux and heartburn when my duodenum was beginning to be blocked. I went from those symptoms to nausea/vomiting in a matter of a few weeks, which makes sense as no fluids or food could get through my digestive system. Ended up having major surgery 4 years ago in order to be able to eat. That surgery saved my life.
I think she needs to discuss this new symptom with her MO. She knows her body the best and would recognize what is normal for her. (I do ongoing CT scans with contrast and also have done endoscopies for testing to find out what was happening in my stomach.) In addition, I do the CA 27-29 blood test at the end of every 3 week chemo cycle to see where my tumor markers are, as increases have historically been indicative of progression for me. I definitely pay close attention to changes in my body. After several weeks of lower back pain late last fall, I brought it up to my MO and we did both an MRI and bone scan. Found out my mets had spread to my bones.
Please keep us updated. We are a supportive group and will help in any way we can.
Take care, Southern
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Thank you very much for your reply, Southern. My ant (her sister) has recently been diagnosed with MBC too (mets to lung and liver at least) and It is being a very difficult time. At least my ant is already 70 and I hope she has many years ahead to live. Her children are extremely close to her and very supportive.
I am also concerned about me and my 4 female cousins and planning to have a genetic test. My mother's tumor was tested and the result was Variant of Uncertain Significante for BCRA-1.
Thank you again
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Hello, all you smart and innovative patients---
I have not yet experienced any noticeable symptoms from the extensive tiny/small peritoneal/omental/colon mets I have, but am dealing with more than 6 months of slowly rising CTC and CA27-29 values. Only my bone mets show up on scans; the abdominal mets have only been detected by direct visualization during surgery/colonoscopy. I am suspicious that the abdominal mets are spreading and I think systemic treatment is not being very effective at this point.
I have been seriously considering pursuing HIPEC and/or cold intraperitoneal chemo with or without surgical tumor debulking.
Have any of you done any of these treatments/surgery or been in contact with a practitioner who is open to considering this for metastatic breast cancer patients?? Typically this is a treatment for primary peritoneal cancers, or metastatic colon/ovarian/gastric and some liver cancers, and I am trying to find surgeons or medical oncologists who do this for other types of peritoneal metastasis.
I have the names of a surgeon in Nebraska, and one in Seattle, either of whom may be willing to consult with me about this, but I am hoping someone here has first-hand knowledge to share.
Thanks for any suggestions or thoughts.
Elizabeth
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Greetings to all! I am doing ok, a bit of chemo fatigue after my last Halaven treatment. It's been raining a lot here in Northern California, which we've needed but I am really looking forward to sunny spring days hopefully soon.
Elizabeth I don't have any information on the treatment options you are considering but they sound like very interesting options. I will be very interested in what you find when you consult with surgeons. I certainly like the idea of applying chemo directly to the effected area.
Barb
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Hi all -
Elizabeth, I’m not familiar with those procedure/surgical options either. Sorry can’t be of any help but would love to hear what you find out.
I just did a CT scan last Thursday and will get results this Wed from my MO. Trying to brace myself for some bad news as my TMs have really increased a lot in the last few chemo cycles. Very frustrated as now my TMs are the highest they have been since late 2017. Seriously, we put up with so many crappy side effects and then it stops working??!! Then hearing today of Zarovka’s passing has just about put me over the edge.
I appreciate when each of you post. It lets me know I’m not here by myself.
Hugs to all 💕
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I’m hoping for good news for you on your scan results tomorrow Southern. I should be getting a PET scan sometime next week of following to see how Halaven is working for me. They haven’t called me yet to schedule so I better call to follow up as I need fro get it done before my surgeon appointment.
I am shocked and saddened to see your post about Zarovka. She was such an amazing inspiration and source of information for me when I was first diagnosed stage IV with liver mets.
Healing thoughts to all.
Barb
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Hi all - well, not great news from my CT scan. It looks like my bone mets are progressing. Some highlights include: In the left first rib area, report says “the bone is mostly destroyed....and moth eaten appearance to the bone.” All this since July 2018! Also which is very concerning to me, is a soft tissue mass in a 5.3 cm zone in the mid descending colon, which appears to be a stricture or tumor mass. Ugh - that is not what I wanted to hear! I have an appointment with my gastroenterologist tomorrow for him to see the report and view the digital images of the scan. The scan report is recommending I do a colonoscopy, which I’m not excited about after having all my D issues lately, which then causes low potassium. I’m sure I’ll need to do it though in order to get a biopsy of what exactly it is (stricture, BC mets, or new cancer.)
So, I’m going off Navelbine. I didn’t ever like it anyway as I had zero energy on it for 6 months, which equaled zero QOL. MO wants me to go to low dose taxotere, Herceptin & Perjeta. I will lose my hair for the 4th time. I’m not keen on this protocol either. My hair has just now gotten a few inches long and I could actually have cute, short hair for the summer. I’m so tired of all these side effects!! I think we will decide on the protocol for sure once we know what is growing in my colon.
All this news was quite disappointing. I’m just trying to take it one day at a time right now.
How is everyone else doing? Thinking of you all. 💕💗
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not sure if this is the right place but anyone here have a Pleurx drain placed in abdomen? I did about two weeks ago and it’s been a nightmare. Leaking out from where it goes into abdomen. Have an ostomy bag over it now but it’s not what I thought it would be. Pressure from ascites forcing it out? Any suggestions would be appreciated-Jill
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Hi grrifff- I’m so sorry to hear about your drain issues. Are you able to contact the doctor that placed the drain to discuss what’s happening? I’ve haven't had one of these placed but have had ascites drained via a paracentesis 3 times. I do remember reading a while ago about others that have had a drain inserted and they really liked being able to drain the ascites as needed. I don’t remember hearing that any “leaked.” That would be frustrating! I wish I had some tips to give you but maybe someone here has some experience that can help you soon.
Good luck and keep us posted. 💕
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southernsurvivor-thanks for chiming in. Have your ascites resolved? What worked? I have a large amount. A paracentesis was done they drained 4,700ml. A week later the catheter was placed they took another 4,700ml. My oncologist said 700x4 times a week(2,800) is okay to do at home. The sheer volume makes it hard to move around. I look 7 months pregnant. I’m pissed now though. It’s completely unacceptable that I have to live like this, there are things they can do to remedy the situation. I feel like I keep getting pushed aside-Jill
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