peritoneal carcinomatosis
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Cathy, thanks. We've moved on to carbo/gemzar and she had her first infusion today. Hoping this provides some relief as she's really uncomfortable and wiped out. Also, I was able to get my hands on her ct scan from last Friday. It seems it's really her liver mets that are going nuts, with one confluent lesion measuring 9.5cm, The report describes her as having significant progression of extensive mets. The funny thing is that her functions are normal for now. As of last week, the enzymes were only barely elevated and bilirubin is normal. I guess we'll see tomorrow about the blood taken today.
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Batfax- I too am sorry what your wife is going through. I pray that this new treatment regimen works well for her. The other women in this thread have been through so many difficult times and have seemed to work their way through them. They haven't said that it was easy but they all seem to remain extremely optimistic despite all of their struggles. They are an inspiration to me just reading their posts.
I met with MO yesterday and she decided to stop the carbo/taxol, despite the improvement in the PET scan due to the rising TM numbers. She is concerned that the cancer is advancing and it is just not possible to detect it on imaging. She ran through a whole list of options as the next step. Ultimately, she recommended Ibrance/Faslodex due to less side effects and potentially better quality of life. I feel comfortable taking this next step because the second opinion that I had received 2 months ago said he would have used this as first line.
At times, I too feel like 4 months were wasted and wonder if I should have started with the Ibrance. However, I have also learned not to play the "what-if" game with cancer. We have no control over what treatments will or will not work. We just have to make the best decision possible with the information that we have at the time.
Cathy- Thank you for reminding me not to take my husband for granted! He is amazing and is always there for me. He can't stand that I have to go through all of this and he feels like there is nothing he can do to make it better. Little does he realize that just being there with me and holding my hand, knowing how much he loves me, is all that I need!
Mom all the time- I hope that your daughter's recent appointments went well and that a new treatment plan has been established. Your daughter is lucky to have you by her side and advocate so strongly for her!
Ki
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Ki, hope the Ibrance works for you. My wife had some limited success for a few months, but obviously others have fared much better. On the plus side, it was very well tolerated. Hoping you get the best of both worlds (efficacy and ease).
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Ki thanks. And i wish you well on this treatment, i second what Batfax said, it has potential, it did not do gr8 by Dani, but nothing does. If you could go to the thread, it's excellent.It's good that she is being proactive.
Batfax it's the same thing with Dani. Nothing sticks. Even lesser time on ea treatment. She was on that combo, it's a bit tough. Mouth sores and stuff, but again it's powerful. Cross finger and toes. Dani's Pet/CT showed the same thing, confluent, 6.7 cm - but Onco did not want her to do a/t in the liver b4, she is always counting on systemic, she has innumerable lesions. And she's got a node in the lung, lymph nodes in the axillary, crazy stuff. No new biopsies? To check if she change her ER/PR/HER2 status? Could that help?
She is getting Rads to the brain area next week, this particular lesion doubled in size.
Onco just informed me next game - Enzulatamide and Herceptin. What am I gonna say? NO? yes, let's get going, what else?!
Hope everyone else is coming along.
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Hi all-
My gosh - I really hate that we have to change treatments so often to try to keep up with the cancer. It's not just incredibly physically exhausting but mentally exhausting as well. We sure do put up with a lot to live. Ugh!
Ki - I'm on Ibrance & Faslodex right now and it has been the treatment that I've tolerated the best since I've been Stage IV. I do have some side effects, but they are minor compared to the chemo I've previously been on. It's all relative though, isn't it? I see the doctor next week and if my tumor markers are up again I'm afraid I may have to go back on chemo. Praying for more time on this treatment.
Welcome, Batfax - sorry you had to join us but thanks for sharing your wife's experiences.
Momallthetime- I'm interested to hear about your daughter's new treatment plan. Haven't heard of that "E" med before.
Happy and thankful to hear everyone has a plan. Hang in there - we are not in this alone! I'm curious- has anyone's oncologist said that they are familiar with mets to the abdomen? My oncologist has been practicing for 15-20 years now and said I'm the first patient that he has ever had where the BC spread to the abdomen/peritoneal area first. The only other patients he has treated with stomach mets are those where the cancer has spread to other areas first, such as liver and bones, and then to the abdomen.
It's late here and time to get to bed. I don't sleep very well these days - have needed sleeping meds nightly for the past few years. I'm going to go back tomorrow and re-read the last several days, as there has been so much info from each of you that I want to remember and pray for.
Hugs to each one of you,
Sheri
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Hi Sheri, my BC did spread to my bones first before I had peritoneal symptoms, I think. My cancer has been pretty slow growing so I'm pretty sure it was growing for a long time before it manifested itself. Sorry you are having trouble sleeping. I spend a lot of time between the sofa and my bed. If I'm restless I don't want to wake my husband. I had something called "stomatocytes" show up on my last blood test. I asked a couple of nurses and they had never heard of it. Something about the inner shape of a red blood cell usually seen in people with liver damage due to drinking. The strongest thing I drink anymore is 7UP mixed with orange or cranberry juice. I had chemo yesterday--made me feel off and anxious. I am better this morning. And so it goes.... Love and hugs, Cathy
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Sheri i know they have new immunotherapies for stomach cancer, ask if you could have it.
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Thanks, Cathy, for your reply. I should state that my cancer really showed up first (at least where they first found it) in 5% of my bone marrow when they did a bone marrow biopsy back in Jan 2014. My tumor markers had been going up but no scan (bone or CT) picked up any mets. Last resort was the bone marrow biopsy. The only mets ever picked up by any scan have been in my stomach area. I'm glad you are feeling better today. Praying that chemo does its job!
Momallthetime, my mets in my stomach have the same properties as my original BC diagnosis, so I didn't mean to confuse anyone to think I have stomach cancer. Are you stating you have heard of immunotherapies for BC metastasized to the stomach/peritoneal area? Just trying to clarify. Thanks!0 -
Yes,Sheri I though it was primarily stomach. The person I met yesterday, she has lymphoma and the 2nd time it showed up in the stomach. And she was having Immunotherapy. I wonder though if anyway immunotherapy would not work. What about Pet/CT, it seems that picks up mets in the very early stages. I know some insurances don't pay for it. We also had a hard time. From what I have seen here, it is a bit unusual.
Cathy hope you feel better.
Onco just called, I have a lot to rehash, she wants a new biopsy, and docs to see, and new treatment. My mind is going on overdrive.
Have a peaceful and great weekend.
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Hello. First time since I went back on Navelbine that I was able to have it 2 wks in a row. I'm always anemic now to the point of "feeling out to lunch." Glad I'm not trying to do math. LOL Hope you all are doing well. Momallthetime, how are you doing? Love and hugs, Cathy
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Cathy how about some IV Iron, would that help you?
By us, things are a bit of a mess now. Onco decided on Xtandi and Herceptin. So Herceptin was started , but Xtandi, Insurance and Onco 's office don't seem to be talking the same language a whole week, SO IT"S STILL NOT approved!! INCOMPETENCE! Let's just say Dani will feel much better when she does not have to spend her days calling these bureucrats all day!
She recommended Sloan for some trials if this fails.So...has 2 appointment set up for the next few wks and I hope they will offer something good
.Feel better soon.
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Cathy - really happy you were able to get Navelbine two weeks in a row. We need it to do its stuff! What does your oncologist suggest to resolve the iron deficiency?
Momallthetime - always incredibly frustrating to deal with insurance. It takes a whole lot of time and even more energy that we don't have to spare. Sounds like you are being proactive at every turn, which is so important. It's exhausting to keep up with the cancer.
I had my doctor appointment today. Good news: my tumor markers dropped 18% in the past 6 weeks! I think the Faslodex (with the Ibrance which I've been on since last Oct) has finally kicked in after 3 months. TMs were over 1,000, so I have a very long way to go, but they are actually going in the right direction now after increasing the past few months. Glad to share happy news for a change!
Hope everyone has a relaxing holiday weekend. Talk to y'all soon. Big hugs as always!0 -
Southernsurviver- glad to hear your tumor marker is going in the right direction. I am on cycle three and mine have been coming down as well. Mine have never been as high as yours though. Highest was in the mid 200's. Now at 103. Let's pray everyone's keep on the downward trend. MO hasn't mentioned doing any scans yet. I hope Ibrance is killing some of the cancer in my belly and not just stopping them from dividing. I want them all dead so this naphostomy tube can go with them. Hope everyone has a great weekend
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Cathy- I am glad you were able to get the Navelbine two weeks in a row. Have they treated the anemia? How are you feeling?
Sherri- when I was diagnosed in 2012 at the age of 39 the cancer was everywhere. In both breasts (small lesions < 1 cm), lymph nodes above and below the diaphragm, spine, ribs, skull, and femur. I had a mammogram 9 months prior that was normal. The path also said that it was slow growing and my MO said that it had probably been there for a long time. MO was shocked that my cancer recurred only in my stomack lining. It is rare but you can find some articles on it. It is called linitus plasticus. It is more common for it to metastasize to the liver, lung and brain. Unfortunately, we fall into the minority of the patients with metastasis to the abdomen. Lobular breast cancer is described a as the sneaky disease because it tends to be harder to image and metastasize to rare sites.
Southernsurvivor and Dianarose- I am so excited to hear that your TM is decreasing on Ibrance and Faslodex! That is great news. I started my first cycle on Wednesday. So far so good. The injection sites weren't even that bad the day of. It wasn't until the next day that I started feeling the tenderness. I pray to God that I am one of the ones that this combination works on. Even if my TM just stays the same I will be happy. Of course I will be even happier if it starts to decline!
Have a great weekend!!
Kim
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Southernsurv it's so nice to hear good stuff!! thx so much for sharing.
Now this craziness with Ins did not end.
Finally Friday late pm. Onco sends an email, that Enzalutamide is denied and it has to go through appeal. It means doc was suppose to call and do her thing.After Dani called all day back and forth. Onco's office said they left a message with Insurance, when Insurance called back they said they could not get hold of doc.Whatever. The thing is she's off treatment comes the 31st 3 freaking weeks. I am so nervous, cannot even begin to explain.
I could send a whole expletive email, it was in my head a whole night.
Well, short of it, i am thinking if i should send an email, telling her of our apprehension, And something to the effect that we really were hoping the office would have taken care of it. Yes, Insurance could be difficult, but the way we see it, onco's office just leaving a message and making a note to follow up, i think that's the real problem. they call, do something else for 3 hours, then when we call them they say oh yeah, we'll try again, and they allowed this to get to Friday pm, when they close!! Friday is almost not a day there, i learned they only know of 4 days(making fun, but it's like that), and with this long weekend, don't they have a responsibility in making sure their ppl have a supposedly life saving treatment. I just know that her liver mets expanded, and there is progression, so how could they in good faith go to their boats....I am really very mad. And very anxious!!!
I think i'll write something, not harsh, but let Onco have it an email, they don't like that, because i think their email get checked by big brother from time to time, and it won't look good for her.
If anyone wants to draft something, by all means. I just pray to God this thing does not go out of whack.
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Desire- I will pray your tumor marker goes down. My cancer is in all the places yours was when you were first diagnosed. When I was first diagnosed I was stage zero and now everywhere. Lobular is crazy.0 -
Hi all - I wanted to check-in this morning.
Cathy, how are you feeling?
Desire - thanks for the name of linitus plastica. I hadn't heard of that before. After reading some about that, I'm a bit confused as it seemed that it is the terminology for a rare type of stomach cancer (not necessarily breast cancer that spread to the stomach.) It does seem to describe where my cancer is now after metastasizing. I was wondering if your oncologist used this name to describe your cancer? I'm excited you are now on Ibrance & Faslodex - will pray it works for you and the rest of us! Give it some time to kick-in too.
Momallthetime- my gosh, I completely understand that this would feel never ending. I hope your doctor is taking care of your appeal this morning. Also, have you thought about talking to a doctor about getting some medicine for anxiety for you? I have seen it from both sides. I am the mom of a chronically ill child and many times I have thought it was worse mentally for me being the caretaker for my son than me having Stage IV cancer. You feel so helpless at times and it can cause a tremendous amount of stress and anxiety as the primary caretaker. My Mom was also my caretaker for over a year when I was so sick and on a feeding tube during chemo. You are such a caring, loving Mom who is a constant support for your daughter. I just want to ensure you also take care of yourself.
Dianarose - it's great to hear you are doing so much better. Hooray!
Take care, gals! Praying for all for successful treatments and a good QOL!0 -
Hello Everyone!! WOW! I'm so proud of all of us--we're all still here with attitude! Between chemo and the stress of the house in NY, I'm not sleeping very well. So dealing with that. I have gut pain right now but have a feeling it's stress more than cancer. Momallthetime, my dr's office told me that when they call my insurance company, they get put on hold for 45 min. I think I'm going to have more trouble with them in the future too. They don't want to go through that to get tests or medications okayed. Dianarose, we've had so much sadness in the last few months losing so many wonderful people. I'm so excited and happy that you are doing better. I felt lighter the minute I heard that. We're all pulling for you. LOVE TO YOU ALL!! Cathy
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Something always has to rain on my parade dam it. Hubby went for yearly physical and doc called just as we were leaving for Pennsylvania last Friday. His PSA for prostate cancer went from 1 to 7.3. Has an appointment with urologist in two weeks. Cancer sucks!!
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Dianarose - I'm so sorry to hear that news. Yes, cancer does suck! I pray your husband gets his diagnosis and his doctor is able to get a plan in place as quickly as possible. Being in limbo causes so much anxiety! We are here to support you with this.
Cathy - stress, stress, and more stress - UGH! I'm there with you, friend. Hang in there. I now take a sleep med nightly which I never touched before mets. We are playing a whole different ball game now. Praying your NY home is completely resolved soon.0 -
Hello all! Well the gut pain wasn't stress. Had a pretty bad episode yesterday with the pain in my gut that builds until I vomit. I slept for 12 hours. Don't know if the Doc will change my treatment or not. I think I'm running out of chemos he feels safe giving me. My poor hubby is off to NY to take care of the house back there. Hopefully we can make it sellable. It's the cutest darn house with 3 porches. Wish I could pick it up and move it to Everett. It would sell easily here and for a lot. My daughter, Amanda, lives downstairs so I won't be alone. She and her husband take good care of me. Dianarose. I am so very sorry about your husband's prostate cancer. I know you both didn't need one more thing to handle. Wrapping you in a big hug!! Hope all of you have a great weekend. LOVE, Cathy
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Cathy- do you think it could be a virus? Is the pain gone now that you threw up. I ate some of those scoops chips on or way to Pennsylvania. Bad move. I had bad stomach pain and my stomach was contracting like I was in labor. I knew if I went to the hospital they would pump my stomach again. I couldn't go through that again! I rode it out for about 12 hours. Very careful now what I eat and how well I chew it. I hope you feel better
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Cathy - I was wondering if your stomach pain was a side effect of your chemo? That is a completely miserable feeling - praying that one of these "episodes" doesn't happen again. I am curious as to what your oncologist has to say about it. Overall, I think having mets to the stomach is so darn difficult, as it's hard to decipher what is the cancer vs. the side effects from chemo/hormonal treatment vs. "normal" gut problems that everyone has time to time! So glad you have your daughter close by while your husband is out of town.
Dianarose - I know what you are saying. My family went to dinner at an Italian restaurant Wednesday night and frankly, I ate more than I should have. I felt so incredibly sick with on and off terrible stomach pains until 2am. I really thought about going to the ER but did not want to have my stomach pumped. I was concerned that the food (maybe the fried mozzarella) may have caused a stomach blockage. Lesson learned the hard way!0 -
Since my peritioneal carcinomatosis doesn't show up on scans very well, my Dr. judges how I'm doing by these flare ups. I had pain all week that only got bad enough to cause me to vomit on Friday. I was taking more Nexium and Motillium( (like Reglan) to keep everything moving all week long. My gut felt sluggish. I had this happening all the time 2 years ago when I was so bad (I almost died). I also had gastroparesis then which, thank goodness, I don't have now. I think the episodes scare me because it makes you wonder if you're backsliding which I know you all understand. I see my Dr. on Thursday so I will let you know what he says. I went 15 months on Ibrance/Letrozole before having 5 or 6 episodes in a row -- I then was on Halaven for 4 months (awful stuff) and then just made it 3 months back on Ibrance/Faslodex before I had more flare ups. I had some flare ups soon after starting Navelbine but figured it was because I hadn't had enough treatments. We'll see!! Symptoms are almost always the same. The vomiting seems to be the factor my Dr. really pays attention to. Sorry this is rambling! I'm still a little out of it. LOVE, Cathy
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Cathy - we certainly do understand how scary these flare-ups would be! My heart goes out to you. I'm so incredibly sorry you are going through this again. I was asking about the side effects of Navelbine as when I was on Xeloda, I would get waves of nausea (and many times throw-up) and it was so worrisome to me given my experience of blockage of my duodenum. It seems that those of us who have these belly mets always wonder if we are throwing up due to cancer progression in our stomachs or the side effect of chemo. One of the main reasons why I love being on Ibrance & Faslodex as it is the first treatment that I've been on in a long while that I haven't had nausea/vomiting as a side effect. I'll pray this flare-up subsides and you start feeling better really soon. Take care, Cathy - thank you for sharing what's happening with you right now. Hugs, Sheri0
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Just curious as to how many of us are now on Ibrance?
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Dianarose--I am on my 18th round of ibrance/femara/xgeva. It seems to be holding things stable. Abdominal mets has decreased. Bone mets is harder to tell if improvement. But it's not getting worse. Janet Lathrop
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Firstmate- so glad it's working for you. I know it has been working for ladies with bone and liver mets but wasn't sure about belly mets. I will finish my third cycle tomorrow. I still have a lot of days where my tummy just doesn't seem right. I am hoping this improves. I also have mets in my spine and skull. I try not to think of them. I have lumps under both arms that they don't think is cancer but are getting bigger. I also have a large lump in my vaginal area that seems bigger. I get stressed every time I shower because I feel them. Does your doc do tumor marker test on you and if so did they drop? 18 months is encouraging!! What dose are you on
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Dianarose - Count me as an Ibrance (and Faslodex) gal. I'm on my 8th cycle.0
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Hello! I was on Ibrance 125mg for 15 months and then 100mg for 3 months. Not many side effects except for being tired and some leg weakness. Has anyone else had problems with itching from Faslodex? My whole hip area would itch off and on. Thank goodness for Benadryl cream. Cathy
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