peritoneal carcinomatosis
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Magpie- nice family picture😊What VHS drinking in that mason jar lol. I had my own cafe/bakery so I put in for my social security and sold the business. I wS there 7 days a week and it was too much. Glad you got something for your mouth sores.
Do you ladies find if you wait too long in between eating you pay the price with gas
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Hello Magpiemumma! What a wonderful family! I know it's my family that gets me through this. They are why I keep fighting. I wasn't working when I was diagnosed stage IV. I think it depends on how you feel; if you need the security of the paycheck; or if that's how you get your insurance.(in the U.S.). My husband's company moved us all over the U.S. and is making enough money that I don't have to have a job. At this point, I'm barely taking care of myself! LOL We live in a home with an apartment so my daughter and her husband live with us. She is here for me when I need the extra help (as is my husband) so I know I am quite lucky. I hope you are feeling well!! I'm off to get my next infusion! HAVE A GREAT DAY EVERYONE! Cathy
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Diana- I am sorry about your Aunt. Glad you came away with moola from the casino. Hope the treatments work.
Cathy- good luck with your infusion today.
Magpiemumma- great family picture. Have a nice break from Afinitor.
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Dianarose, very sorry to hear about your Aunt. That's so sad.
Judy, lovely pic! You and your family are beautiful!!
Artist, best of luck on your upcoming scans and appointments. Hopefully the twinges you are feeling have nothing at all to do with cancer. I know it's scary, but try to stay calm.
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Well, I'm back from a much needed vacation to see my BFF in New Jersey. We had a wonderful time with beautiful weather. I missed so much here - trying to catch up.
I find it so hard with stomach mets - causes so many issues. Then every little thing you don't know if it's just normal digestive issues or the cancer!
Dianarose - so sorry for the loss of your aunt. Sending loving thoughts and prayers to you and your family.
Cathy - my brother used to live in Everett and now lives in Mukilteo. Has worked for Boeing for 25+ years. Such a beautiful part of the country. Happy you have great family support!
Magpie - lovely picture! I used to not like to take my picture as I was a bit overweight and didn't think I looked too good in pics. Now I find I'm taking more and more pictures to create memories for my kids. In fact, we are taking family pictures tomorrow and I may even send out Christmas cards with the pic! Having Stage IV cancer sure changes your outlook on life.
Hello to the rest of our belly mets friends - I hope today is a comfortable, peaceful one for each of you.
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Hi Hummingbird,
I missed the last sentence in your recent story about your dog:
<My Mom has also had progression and will start Xeloda tomorrow. I worry about her, of course.>
You two have been such good support for one another and are beloved!
And you both are and remain in my loving healing prayers for complete healing on all levels.
This is a challenging time and I'm glad your love will help sustain you.
Please feel our loving care too, Hummingbird.
You are always so kind and compassionate, may it return to you sevenfold.
Love & light, Stephanie
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Stephanie, thank you so much. It is so hard to see my Mom go through this. She goes to a different cancer center than I do and her onc called me the day before my mom's appointment to discuss her progression and she asked me just how far I thought my mom wanted to go with treatments, since she is now down to only chemo choices and her health isn't great. But my Mom isn't ready to quit and so she will try Xeloda. She's a brave lady but this is all so confusing for her. I have to hope I can hang around long enough to continue to support her. She thanks me all the time. I know this would be devastating for her without me. Thank you for your kind words and goodwishes.
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I just saw on Stephanie's thread that she is "quite ill" and to send kind thoughts. She just posted today and I wanted everyone to know to hold her in the "light" and send love so she might pass gently onto the next journey home. She has been in hospice for a long time. She is an extraordinary soul and so compassionate to everyone. I wish her pain free peace.
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Stephanie, I am so sad to hear that you are very ill. You are always in my thoughts and prayers. I hope you are comfortable and pain free. You have taught me so much, Stephanie. Sending my love.
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Stephanie-so sad you are so ill. You have given me strength and hope. Lots of love , Dian
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Sending my love for all of you too!
I just wrote a long personal update at https://community.breastcancer.org/forum/135/topic...
Maybe that's a good place to keep updated on my doings.
I will continue to post at bco, while able.
Thank you for your kindness and I hold you all in my loving, healing meditations.
warmly, Stephanie
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I may be posting this prematurely but would love some help and advise. For the last few weeks I have been having pain after eating (and early satiety) This past week the pain in my in my abdomen which radiated to my back, .was so severe I went to emergency in the middle of the night. I didn't stay because they couldn't see me for 4 hours. The next I got in to my oncology internist. She did blood work and had me schedule a ct scan and endcosopy. After the scan she contacted me immediately. There were apparently spots over my omentum and some on femur and spine. The bone are old, and probably not cancer. The worry is the omentum. I am meeting with her and my oncologist first thing Monday morning for next steps including PET and Bone scans. Anyone with mets to omentum? Treatments etc?
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Ah Stephanie, you are breaking my heart. You have been so unbelievably strong for all of us that I don't see how we go on without you. We will but with heavy hearts. I'm not religious but I laugh and say George Harrison is my spiritual guru. To be that sure about what comes after is astonishing to me. I look at pictures from the Hubble telescope and take solace in that we are all a part of that! You have enlightened me over the years and made me think. Thank you for your insights! Hope your days are filled with all the things and people who you love. HUGS Cathy
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Hi Curly Sue, I was diagnosed on 29 Sep with mets to the Omentum and bones. I had the same symptoms as you prior to this diagnosis. I had a CT scan which showed 'stranding and nodules' on the Omentum and sclerotic lesions on my spine. A biopsy confirmed that I had ILC now in the Omentum. I've started hormonal therapy with Exemestane, Afinitor and Xgeva injections. I've had to stop Afinitor temporarily due to bad se, but will resume at half the dose when these subside.
If you have any questions I'd be happy to answer them, but in the meantime sending you hugs and hope you get some clarity when you meet with your doctor,
Stephanie - sending you hugs. You have unbelievable strength and have given so much to others through your battle with this insidious disease. I wish you peaceful pain free days and nights xxxx
Jud
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Curly sue- my scan shows mets to the omentum also. Hurts every time I eat anything. I am hoping once I start chemo this week it helps. I never liked anything to do with medical stuff or even the human body. Now o am learning the names of every body part 😩
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Good morning!! Have any of you had trouble getting your tumor markers tests paid for by your insurance? Mine go through Qwest. I just got a statement Friday that my insurance won't pay. Calling them today to find out why. Hope you are all having a great day! Love and Hugs, Cathy
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Wow, Cathy - I hope that this was an insurance error, as I've never heard of insurance not paying for a tumor marker blood test! I always go through the lab at my oncologist's office, but it shouldn't make a difference where the blood is drawn.
It seems we as patients have to be so diligent in providers' billings. I've seen many billing errors in my days.....
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Once mine paid for the tumor marker but wouldn't pay for a second opinion. All crazy
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Hello. I am rudely jumping in without reading the last few pages. My question is, does bloating due to peritoneal or ovarian mets come and go, or is it constant? Before the liver mets were diagnosed, I looked pregnant. On taxol I looked normal again. I have attributed the change to the liver mets dying and/or to the shrinking of large uterine fibroids with permanent chemopause and the withdrawal of tamoxifen. So lately I look normal in the morning, and then by evening the pregnant look can happen. How pronounced it is changes. It seems slightly more bloated on the right, at he level of my navel. But then again, my hips and spine are not perfectly even. I'm trying to figure out what could be going on and what to look for, because though I have been NEAD for quite a while, my last three PET/CTs are ambiguous with a liver area of mildly increased uptake. And my CA 27.29 has been slowly rising, now out of range for three of the last four months. My onc has now ordered CT with contrast, bone scan, and breast MRI. She did check CA 125 several months ago and it was normal. I have no pain, just some occasional liver feelings, which is also ambiguous. Does anyone here with ILC have any input for me?
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Hi Shetland Pony, I have ILC with mets to the omentum and bones but the only tumour markers measured are CA 15-3. I don't know what the other tumour markers you mentioned are for. Have they got your liver mets to be stable as you say you are NED? . I do have more pronounced swelling on the upper right quadrant of my tummy in the evenings, but put this down to a fluid build up ... it usually goes down again. Some ladies on here have experienced the highs and lows of ascites and will be better placed than me to answer. Cheers Jud
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Hi, Magpiemumma. What kind of fluid build-up do you mean? Yes, until recently my PET/CT showed no areas of increased uptake and my bc tumor marker CA 27.29 was normal. Now my concern is that there could be some ILC activity in the peritoneum or ovary that the scan is not picking up well. So I was just looking for information about this bloating symptom and about how to detect ILC mets. The CA 125 marker is supposed to be connected with ovarian or peritoneal problems. My onc did that one because of my rising TMs and bloating.
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The fluid build up I was referring to is ascites - it's a build up of fluid in the peritoneal cavity caused by the cancer. You can have it drained by a process called parenthesis where they put a tube in your tummy and drain it out. Some ladies have permanent drains put in so they can undertake this process themselves. However if you had ascites it usually doesn't disappear .,, just gradually builds up until draining is required. I'm not a good source of knowledge on this as fortunately I haven't had this issue yet. I believe a scan would show if you had ascites. Sorry I couldn't be of more help, cheers Judy
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Thank you all for providing so much information in this thread. I've been lurking for a while but have a question. Back in late August my wife got a CT scan that for the first time noted free fluid in the pelvis. More recently in October, the CT scan described her as having small pelvic ascites. She's had some fullness/bloating/appetite issues, but they have improved since she switched to Xeloda from A/A + ribociclib. However, she doesn't appear to have peritoneal carcinomatosis in the the way you guys have described (omentum/peritoneum mets), but she does have a lot of lymph node activity in the upper abdomen--retroperitoneal/retrocaval lymph mets as well as a confluent upper abdominal mass (6x3.7cm). Does this sound like what you guys dealt with in the run up to developing ascites? She also has had pretty extensive liver mets and a pancreatic met, but both organs appear to be functioning normally. Would appreciate any insight you guys have. Thanks.
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Re: Shetlandpony and Batfax posts
My doc doesn't scan anymore since my mets are so widespread there isn't much point. But the CT I had in Dec 2015 showed messentery, omentum mets and thickening in the duodenum and intestines. It was the thickening in the intestines and narrowing of the intestines that causes the fullness, nausea and vomiting I experienced. The ascites was a separate issue. It's really hard to separate which issue comes first unless you get lucky and scan just as something starts.
I had in March 2015 digestive issues, fullness, constipation misery. I complained and finally had a May CT/ ultrasound and tap which took off a gallon of fluid. Whew.. They should have taken off more. This relieved the "pregnant look" and made me feel a lot better. I didn't get total relief until I got a pleurx drain installed (sept. 2015) so I could get rid of the fluid myself. I could eat and get around and did ok. Then the N/V started and that's when the cancer infiltrated the intestines. So we tried Herceptin (bust), Doxil (bust), Faslodex (worked short lasting), Ibrance (puked it up), Taxol (worked great then developed allergic reaction dose 2), Abraxane (too slow to act), Gemzar (worked but markers rose), Navelbine on currently and it's working but whenever I take a break the cancer takes off like a grass fire. I have mets, liver, lung, bones, intestines, omentum and malignant ascites. This is a hard road to travel.
Blessings to all who have reason to come here. (((Hugs))) Prayers to you and your loved ones.
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Spent the week trying to celebrate my 63rd birthday--the last 14 with breast cancer. I have been so tired!!! Barely getting around. I have been using a walker when we go out these days--only make it out a couple of hours at a time. Finally realizing I'm getting a lot of lower back pain. I think I'm half way through this treatment. Can't wait til it's over! Love and Hugs to all, Cathy
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Hugs Cathy... the fatigue and pain will hopefully ease up some.
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Happy belated Birthday Cathy. I hope you were able to enjoy the day with family and friends and have somewhat of a comfortable day. I cannot imagine battling this disease for 14 years and have so much admiration for your strength, determination and positivity.
Rosevalley you also show such strength and totally amaze me. I am totally wiped out by just the first line of treatment for mbc that they have put me on and then I read of all the treatments you have tried and realise how long the journey is ahead of me and how many twists and turns this journey may have.
I wish you both pain free days and nights and love and support to surround you
Judy
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Hi ladies,
I have been keeping up with all of your posts, but haven't felt great lately to post. After many tests on Monday, one being a CT scan of the lungs to look for clots, I found out that I have a pulmonary embolism. So I began to take a blood thinner. Well, my ascites just keeps increasing and has become more and more uncomfortable to the point of pain now. My belly is like a big balloon ready to pop! I have an appointment in the Interventional Radiology Dept. on Tuesday to get a paracentesis done. This was tried a few weeks ago in the ER but they said it was too risky to have it done there. Well, because of this procedure, I have had to stop the blood thinner until next Wednesday. Of course, that has me - and my oncologist - very worried. Why is it always one thing on top of another?
Cathy, Happy belated Birthday! I remember that you are on Halaven like I am. I also get the bad lower back pains, but so far only on and off.
Rosevalley, it's so sad that on your week break from chemo, you have to worry about the break causing progression! Sorry to hear that.
Wishing everyone a good weekend and a Happy Halloween!!
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Thank you for letting us know Rosevalley. You have traveled a long hard road yourself and I wish you every measure of comfort and relief.
Thank you Hummungbird, Scan right after Thanksgiving and I will try and not stress too much. You HAVE had one thing on top of another....I'm so sorry Hummingbird that you have not yet caught a break. I'm praying that Tuesday's procedure and Wednesday's meds goes well for you and they get you back on track fast.
Happy 63rd Birthday Cathy!
I wish that going into the Holiday's some magic would come and take away everyone's suffering........Thinking of you tonight Stephanie.
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I expect to be dancing into the light soon, trying for grand finale next Wednesday, Nov. 2 for a multitude of reasons. Wish me a fare-the-well. I've loved my time at bco, meeting new friends and enjoying our belly mets group. Not many of us in the world so each of you is a precious treasure to me.
Thank you for being stars in my life! Stephanie
I'll likely cut back my reading here, but will ask my Circle members here to read bco messages at https://community.breastcancer.org/forum/135/topics/842670
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