peritoneal carcinomatosis
Comments
-
Hi Diana Rose,
I've been under the care of gastroenterologists for most of my life because of my rare genetic condition, Peutz-Jeghers syndrome. I have polyps throughout my digestive tract. No cancerous tumors yet, but have had all the usual issues from reflux to digestive disturbance to anemia to pancreatic insufficiency to absorption problems to short bowel effects to blockages to pre-cancerous polyps.
Sometimes gastroenterologists help, sometimes, not so much. Their bag of tools is small, but highly specific to the sorts of issues we face.
I stopped dealing with polyps a few years ago, in spite of symptoms including blockage risk and greatly increased risk of GI cancer.
Just can't deal with more doctors, tests and medical interventions now...gratful for hospice keeping me
sagesafe.I've had liver mets for almost 3 years and ascites for 2. There are peritoneal nodules that I can palpate, but I no longer get scanned or scoped or treat them directly. All I do is drain a liter of bloody ascites daily since August 2015.
Am a little scared and sad now because my drain line gets clogged up with "space alien babies", gelatinous goop and blood clots that slow drainage.
Oh well, as I often say these days, this dying is harder work than I guessed, even after watching many die - family, friends and hospital patients (I used to be a volunteer hospital chaplain).
Hard work, but this is my job now and somehow my care team, courage and humor keep me going.
Please don't be terrified by me.
And do seek proper medical care. It's too bad our bodies are parceled out by medical specialists, but those are the rules of this game we are playing now.
warmest love and sweet dreams all, Stephanie
0 -
A blood tumor marker test that isn't always done in MBC, but can be associated with peritoneal and pleural mets is CA-125. It's commonly used in ovarian cancer patients and can signal abdominal problems - both malignant and benign.
Just a thought for those whose scans and other blood tumor markers don't reveal peritoneal carcinomatosis.
loving kindness, Stephanie
0 -
Stephanie- I hear you about so many doctors. I have three vaginal lumps that don't hurt but als haven't gone away. My primary checked them out and didn't know. Now who do I see for this. Makes my head spin. My CA125 was normal for three years and started going up 8 months ago. At first it was just a few points and in June went to 87.
Had to go to the lab this morning to have urine test redone. The tech wasn't getting it. She kept saying she only needed one sample, the clean catch. Had to explain three times that each sample was from a different kidney 😖 I was so frustrated
0 -
It was a wonderful gastroenterologist who told me I had gastroparesis probably caused by lobular cancer. She told me before my ONC. Her mother-in-law had just been diagnosed with lobular breast cancer and she had been researching it. She called my ONC and insisted they continually test me until they could prove cancer. I had to switch oncologists to get diagnosed with peritoneal mets. She told me that I didn't need to see her--just get treated for the cancer. I haven't seen her since but she made a huge impact with my diagnosis of peritoneal mets. Navelbine finally got my stomach working again. Love you all--good morning! Cathy
0 -
Dearest Stephanie, Never ever ever terrified by you. I hope to emulate your grace and dignity and caring of other people. Rest well my friend. Cathy
0 -
Cathy, love your story and so happy your gastroenterologist believed you when the oncologists couldn't find the source of your troubles.
DianaRose, I had several reproductive tract problems because of my rare genetic condition (a huge ovarian tumor that wasn't cancer, uterine polyps & fibroids, bizarre periods, early stage cervical cancer after years of bad PAP smears and precancerous lumps, bumps and tissues).
If I knew then what I know now, I would have skipped the PCP and gynecologist and headed right for a gynecological oncologist.
Their specialty is gyn abnormalities and cancers, including mets from other places.
I think with lobular which so frequently goes to the reproductive tract as well as belly, that a gynecological oncologist could be a great advocate for sorting out the annoying from the truly threatening. Plus, they specialize in high-risk populations like those of us with cancer-predisposing genetic mutations.
Finding the right specialists gets expensive and is annoying, but they can save time, symptoms and lives. Worth it in the long run.
Good wishes with the bladder/kidney issues. Peeing knives is so very painful. Hard to keep breathing and loving a body under so much stress. Wishing you one healing breath at a time.
Okay, really need to nap now!
love & healing hugs, Stephanie
0 -
Sleep well Stephanie. You are always so giving and loving. Hugs.
0 -
All my scans say that there was no uptake anywhere with the contrast. Had anyone else have this happen. The reports all say suspicious of Chrones disease . Not sure I spelled that right, tired
0 -
Hi Dianarose, You know how I have trouble with scans or tumor markers showing uptake even when it's obviously happening. I wonder if an ordinary assumption with your symptoms would be Crohn's Disease not taking into account you have peritoneal mets. I would think they could mimic each other. We need someone really smart to give you some answers! Hang in there! Hugs, Cathy
0 -
Good morning everyone, happy Friday!!
Just wanted to send you all hugs and healing thoughts and hope you have a good weekend. I'm off for a bone scan Monday so we'll see what that shows up.
Love to all the belly mets group, Judy xxx
0 -
Had consult about surgery today. She said abdomen is so unclear and a mess that she would not do surgery. Said it would probably kill me. She suggested a new oncologist and get in treatment. One more consult tomorrow and will get a new oncologist and go from there
0 -
HI Diana,
As someone with a load of abdominal adhesions since infancy, I recognize the high cost of surgical interventions.
And I also understand the emotional impact of watching that treatment option be washed away.
Sending a warm & loving cyber hug for you, Diana Rose.
More loving kindness for all my belly sisters, Stephanie
PS, I've been working on getting more belly laughs - the closest thing I get to healthy abdominal workouts some days.
This workout program made me chuckle:
My doctor took one look at me and refused to believe that I work out. So I listed the exercises I do every day: jump to conclusions, climb the walls, drag my heels, push my luck, make mountains out of molehills, bend over backward, run around in circles, put my foot in my mouth, go over the edge, and beat around the bush.
0 -
Stephanie, that workout program gave me a good belly laugh!!! Too, too funny! Thanks for sharing that!
0 -
Stephanie- Love your work out! I do that too. I have to ask you do you have any issue getting drainage bags with your insurance? I know you are on hospice do they play the waiting game...hoping you will die before they send any supplies out? They used to authorize my supplies every 3 months now it's every month... guess I am supposed to kick off. I am down to my last 4 bottles and am getting a run around. Insurance says they have no order, supply place says no insurance authorization...Oncologist says they sent the order- meanwhile I call each spend 1/2 hr on the phone every day with each and get no where. I pull off a packed container.. 1,100cc the last 3 days in a row. Why is this so hard? Do you get your supplies no problem? I am going to be one sad person come Wednesday when my supplies run out. I get chemo Wed and will need to be bloated and miserable. uurrrgh... I don't need this.
I just got off the phone and yippee they approved it. I guess calling every day works. Sigh.. it's a little stressful though. Breathe... they said they will be shipping it out. Breathe.
0 -
Rosevalley, I agree - it is so hard to deal with insurance, social security, long term disability, etc. when we are so sick! It always seems like a constant battle to me.
Dianarose, my younger son has Crohn's disease. I know it can be difficult to diagnose. We've been trying to manage this for over 4 years now and hasn't been easy. His biggest symptom of a Crohn's flare-up is incredible stomach pain with diarrhea at times. I hope the doctors can figure this out for you.
Stephanie, you gave me a good laugh for the night - thank you!
To all my belly mets BCO friends, I pray you have a peaceful night and a wonderful weekend!
Much love,
Sheri
0 -
Had second consult at Lahey and he said the same thing. Surgery would be too dangerous. Meeting with a breast cancer oncologist Wednesday.
I am really depressed. Every morning I have bad cramps, nausea, and gas. Not sure what to do. Wednesday seems like forever away. I feel like I will never feel normal again. So much discomfort after I eat too. Kidney infection is back in both kidneys. On Bactrim again. I just feel like crap
0 -
Oh Dianarose, I'm so sorry! Do you have a Doc you can call? or feel bad enough to walk into ER? I hope sincerely hope you can find the right Doc and get the help and treatment you need. Wrapping you in love, Cathy
0 -
Dianarose- I am holding you in the light of prayer and lovingkindness that you have the fortitude to hold on till Wednesday. It is a long time to be uncomfortable. I hope you have some CBD oil and zofran and some pain meds to tie you over. We will be with you in spirit and hoping for a good experience with your new oncologist. I think I would be depressed too. I am hopeful that once you are on active treatment you will start to feel better. Hugs.
0 -
- Cathy- the ER here is useless. Our hospital doesn't even admit patients anymore. I will just suffer it out. My stomach has hurt all day. When they did the endoscopy he said he didn't see anything in the stomach. Probably would not be able to see lobular mets. I don't know . All new and confusing 😢
- Rosevalley- tha
0 -
Dianarose, I had an endoscopy also. I remember the Dr. told me he couldn't see anything for sure but he would bet it was peritoneal carcinomatosis So it goes with lobular cancer. Wish we could make your pain go away. Cathy
0 -
Cathy-how were you first treated for the Mets? How soon did it help with the pain and eating? I eat and then pain for 3-4 hours 😖 So much powerful burping to
0 -
Dianarose- In Feb I had been sick for 2 months with N/V burping, gas bloating and utter misery Faslodex shots brought me out of it. I got bumped out of hospice using faslodex. Your oncologist might do a chemo to get a faster response. Both Hummingbird and I had good response from Taxol. I developed an allergy to it and we had to switch to something else. I hope whatever they choose works quickly to relieve your misery.
0 -
Rosevalley-Did they put you in hospice when they found the abdominal mets or was that before? Scary! So glad they found something that worked for you. I will admit I am terrified! Even have nightmares about this. How are they monitoring you? My first indication was markers went up a few points and stayed there for quite awhile and the went up to one was in the seventies and one was in the eighties. That was back in June. Can't imagine what they are now. What makes me nervous is when they did my oncotype DX I only scored a 6 as far as how my cancer would respond to chemo and even the oncologist said it's the same cancer no matter how many positive nodes or mets.
I am so glad I found you ladies. I had felt so all alone with this. Your help is so appreciated. Diana
0 -
wanted to ask if anyone experienced lumps that don't hurt in the vaginal area
0 -
Hi Dianarose, no lumps in the vaginal area-- just dryness! I would think you should get it biopsied though. You asked me about treatment--my 1st symptom was a constant feeling of fullness and reflux which turned out to be gastroparesis (cancer cells were covering the electrical stimuli that tells your stomach to empty). I took something like Reglan (3x pills day) which gets everything moving (including intestines) and Nexium for the reflux (4pills day). The gastroparesis showed up on the tests but not what was causing it. I had continual tests that were negative until I finally had enough ascites fluid to test and that was positive for "floating strands of cancer cells." During this time I had those terrible gas pains that come in waves until you are vomiting and constipation that would leave you sitting on the toilet until your butt, hips and legs have fallen asleep. I started in December with Gemzar which effected my liver so I was taken off it. I then started Navelbine weekly but quickly learned I could only tolerate 2 wks on and 1 wk off. After 2 months I could definitely tell a difference and by 4 mos. I could tell we had beat the cancer back. My stomach was working, no more constipation, and no more terrible gas pains that can drop you to your knees until you are throwing up. I wish I could tell you for sure that Navelbine would work for you but we are all so different. I know 2 mos and 4 mos seems like a long time but at least it gives you hope for the future that this too will pass. I wish you all the best. Hope you are feeling better today. I just woke up so I hope this makes sense. HUGS Cathy
0 -
By the way, I stayed on a liquid and soft food diet during my treatment until my system started working better. Cathy
0 -
Dianarose- March 2015, I started having indigestion and constipation, nausea then the ascites started. I had a paracentesis in June 2015 and they took off 4 huge containers. It was miserable filling up with fluid and getting tapped again and again. I switched oncologists and in Sept of 2015 I had a drain put in so I could take off the fluid at home. This was a Godsend!! I was 100% more comfortable. Then in Dec 2015 I was hospitalized with nausea and vomiting and CT revealed partial bowel blockage from the cancer surrounding the intestines, duodenum and causing stomach contents to back up. From half of Dec till Feb I was on a liquid diet and puked every day sometimes several times a day. I took reglan, fentynl patch, zofran CBD oil and was miserable for months. I lost a lot of weight and finally they had to give me IV fluids at home and the home health nurse left my port accessed so I could give myself normal saline. While this was going on they tried Herceptin-failed, Doxil- failed, then Faslodex and a huge improvement. Once that kicked in I started to be able to eat a few soft foods like scrambled eggs and custard. Then Faslodex stopped working and we tried Ibrance- puked constantly. Couldn't tolerate that then Taxol- allergic reaction, Abraxane- no improvement, gemzar and now Navolbine. I can eat, poop, still pull off ascites fluid and fatigue and hip pain is my major issues. So I have been having issues for all of 2015 and 2016. I hope this gives you some hope that options are available and relief possible. Hang in there. This is a tough road.
0 -
Cathy-all of your symptoms are like mine. They had me on Reglan in the hospital but didn't send me home with any. I have a prescription for the reflux. When that started it was all of a sudden. Would wake up choking on it and it really burned! Even if I eat jello there is one spot in mr stomach that hurts. Other then that and the gas nothing else hurts, thank God. Wish there was something I could take prior to eating that would help. Are you still doing chemo?
Rosevalley- you poor thing. I detest puking! I puked 3 times during this, once from pain meds, once when they dried to make me drink the ft crap before they pumped my stomach(I warned them) and once from over eating on the liquid diet. I think my body is adjusting because I'm not starving anymore. The MO I have been going to wanted to put me on Ibrance or Xeloda. I don't think Ibrance would be a good idea being how I have constant infections in my kidney and have the naphrostomy tube. Do you lose your hair on Navolbine?
0 -
Hi Dianarose, I was taking the Nexium and Reglan before meals to speed up my system. With Navelbine I had hair thinning. Ah Rosevalley. I'm so sorry. I too had ascites pumped out--at one point it was up to 7 liters at one time. I never did get a way to do it at home. I just hope you have things in your life that give you joy. Have I told you how much I love the Beatles? LOL Every day for me they "take a sad song and make it better." Hang in there! LOVE AND HUGS TO ALL, Cathy
0 -
Does anyone take something to calm your nerves? Yesterday when I got up I had a lot of pain and gas. Today isn't so bad. Don't know why. It's all weird.
How long do you stay on Navelbine? I was reading that pill form is as effective as IV form. Wednesday seems forever away
0
