peritoneal carcinomatosis
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Dear Linda, Thank you for sharing your decision with us. May the relief that you feel today sustain you as you traverse this next leg of your journey. I'm holding you in my heart and thoughts, wishing you many quiet moments of comfort and love. We are all here for you.
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Oh Linda, I am so sorry to hear this. I am glad you feel at peace with this and just pray that you find yourself living with hospice much longer than you anticipate. Please keep coming here!
Southern, The Abraxane worked pretty quickly on my ascites. I want to say about 3 weeks and I ended up going 8 weeks without a para. Then we inadvertently skipped a few treatments for various reasons and the ascites flared up again. I got treatment 3 weeks on 1 off. So far Xeloda is not doing much for that. I've ben going in every two weeks. But hope and pray it just works slow and this third round will start kicking it's BUTT! I just dread the fatigue factor........
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Geez girls, I'm overwhelmed at the support I'm receiving from you! So glad I got you all.
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Linda, Thank you for sharing. I hope I too find peace when the time comes for my decision. Prayers.
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Hello! A family member has been diagnosed with Stage IV metastatic breast cancer (peritoneal carcinomatosis). Don't have treatment information yet (all still new) but am trying to gather lots of information before seeing the oncologist. Any recommendations for websites, treatment info, finding good oncologists, etc? Thank you!
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Cross Posting.....
To All,
It is with a very heavy and sad heart that I tell you that LindaE54 has passed away peacefully. Her sister and I have been in contact for awhile now. She became quite ill suddenly and passed away yesterday afternoon at the hospital. I'm having a hard time with this as we just talked yesterday. She leaves behind a loving sister, niece and grand nephew who she loved very much. I will remember her kind and generous spirit.
Linda
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Thank you for letting us know, Linda, although we're so sorry to hear this unwelcome news... Our deepest sympathies to LindaE54's family and friends and all those who loved her.
The Mods
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This announcement about LindaE54 has shaken me to my core. I'm so glad for her that she didn't have a prolonged hospice experience but can't believe she never even made it to hospice. We'll miss you Linda. So sorry for your family. LOVE, Cathy
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I'm also feeling quite shaken by the news despite being a relative newbie here. We all try so hard to hold it all together, continuing on and planning as best we can but things can change so fast. I must admit that the sudden loss of Linda has hit me, making me take stock a bit of what is really important to me. Rest well Linda - you will be missed.
Pat
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Lindalou, thank you so very much for sharing this about Linda E54. What a sweet lady and we will certainly miss her. RIP Linda.
Honestly, I too can’t believe Linda’s sudden passing. She just posted here the day before she died! Makes me so sad although I am glad she didn’t suffer any more. Once again, a big dose of reality that many times things don’t go as we planned. Right now, I’m stopping to pray for Linda’s family and friends, that they find both peace and strength during this difficult time.
For myself, I need to get back to preparing/finishing things that I want to do to help my family for when I’m gone. I started getting some of my “ducks in a row” last year but then had progression and while the urgency to do this should have become greater, I either was too tired from chemo and/or life got in the way.
Hugs to each of you today as we process this,
Sheri
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I am so, so sad to read this. Linda was a stalwart for me. I didn't come to the site often but from the time we were both trying to get Palbociclib (me, for my sister) which wasn't yet covered in Quebec, and every step since, whenever my sister started a new treatment I would come here to seek help and advice. Linda it seemed would always have started the same treatment just before my sister and would share her experiences. She was so kind and helpful. Today I got what felt like miraculous good news about my sister's response to Xeloda, which she started in November, so I literally came on this board today hoping for good news on Linda. Hearing this is a big shock. I am very, very sad for her sister and also honestly for all the people here who benefited from her friendship during this journey. I am glad her suffering is over though, and I admire her so much for how she gave to others on the way. I was on my knees this afternoon thanking God for my sister's response to Xeloda, and I will be back on them tonight praying for Linda and her family, and also thanking God for the privilege of having known her through this community.
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hI linda
I am very sorry but I understand
Even though I am not there yet I have been thinking of making the right arrangements for when times comes I ll do the same.
I will have you in my thoughts
I send you hugs
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Saw the physician's assistant on last Friday. She thanked me for all the great notes I take about when I have attacks but then told me there is nothing they can do about them. At this point what isn't caused by cancer is caused by scar tissue and damage caused by the cancer. So I'm wrapping my brain around my new reality. They have changed my treatments over the last year frequently hoping they could get the episodes to stop to no avail. Well I shouldn't have to worry about gaining weight! lol Been having another episode the last couple of days...a little different....more diahrrea and less vomiting. Sorry for the TMI. I'm hanging in... Love and HUGS, Cathy
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It is shocking to see how quickly Linda went after her decision. She was a generous spirit and will be missed. Peace and blessings to all.
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Retro,
That is such a hard thing to deal with every damn day. I think the gastro issues are worse than most other symptoms as it's the center of our bodies so tends to spread it's misery all over. Xeloda does not seem to be helping my ascites. I've ben going for a procedure even two weeks but think I need it every 9-10 days now. I had high hopes for this one and have no idea if it is helping my liver until the next scan.......Hope you stop feeling "kinky"........
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I was just reading an article that listed a lot of different foods that can help reduce ascites. It might be worth goggling and trying some of them.
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Thanks, Artist! I guess I figured they were using the information I kept for them to determine whether or not treatment was working so I didn't really expect for them to come up with something to treat the symptoms. Nauseated in the middle of the night. I Hope everyone is having a comfortable day. I partied yesterday by buying a dish washer! Yeah, no longer me!! HUGS, Cathy
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Hi all -
Cathy - hope you are feeling better. Nausea is the worst and so hard to deal with. What meds do you take for nausea and your “episodes”? You do have a great attitude and certainly lift my spirits.
Artist - have they ever discussed inserting something where you could drain at home? I certainly wish some treatment could be effective on ascites. I just don’t understand how there is no med that could help with that - UGH!! I certainly agree with you that gastro issues are so bad - affects everything we do.
Mae - sorry I didn’t respond sooner to your post. I think I have been at a bit of a loss after losing both Linda and Kandy. Also, I wish I could add more but we all have had such different experiences on hormonal therapy and chemo. I will say I have had the best luck on Xeloda (worked for about 14-15 months) and my current treatment of Halaven (6 months so far.) Other chemos either never worked or kept me stable for a short time. I’m not familiar with CA oncologists but many say wherever you live that you should go to a major cancer center if possible for the doctors and most up-to-date available treatments. This thread and forum, in general, have a wealth of information. Please check back as we welcome your questions.
Take care everyone you are always in my thoughts.
💕 Sheri
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Southern,
So far my one says inserting a drain has a high potential for internal infection so he is holding off. Abraxane worked on the ascites for me but he stopped that due to severe neuropathy. I think Xeloda is causing just as many hand issues so if we find out it is not working after next weeks scan maybe he will try Abraxane again. I decided to go for a drain every week instead as if i wait too long I am in misery for 3-4 days before and my inner organs hurt for 2 days after from being pressured outward I guess.
Diana, I have been suspecting that some foods irritate the ascites, particularly salty things and carbs which I have been eating a lot of. Going to Google tonight. Any relief is welcome!
Cathy, i don't know if it's feasible for you but I take a dose of peppermint CBD oil with a very small amount of THC and it really helps my nausea, mostly from Xeloda.
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Hey Artist! I live in Washington State so cannabis products are legal here without it having to be medicinal. I tried some lozenges and they made me paranoid! LOL Even though I know it's legal, I still worried! Shades of my 60's upbringing! Gotta go....I feel a flashback coming on!! HUGS, Cathy p.s. I do use Zofran for nausea and it works very well.
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Hey Southern,
I saw your post on the liver thread but thought I would respond here. I found out about my progression to my liver capsule due to vague pain/discomfort under my right ribs. I was fine lying flat but had trouble when I was upright for awhile.
I understand that the liver itself does not have many pain receptors but the discomfort I was experiencing was from the cancer in the capsule (peritonium) pressing on the liver.
This may be what you are experiencing given that Mr. C is already dancing in your belly.
Pat.
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Thanks, Pat. I hate these vague feelings of discomfort and always wondering if it’s the cancer growing.
I will tell my MO when I see him on Wednesday that I want a CT scan. It shouldn’t be an issue and probably can get it early the following week.
Ugh - here I go again......
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Good morning ladies,
My mum has also pain on right side like you Southernsur, but ultrasound and CT didnt find anything special. Her liver is Ok without mets. I am suspicious to met on part of bowel which spread from peritonei. So dont worry it doesnt be what you think.
And small update, my mums TM are growing to 324 now, I am searching for way to get Ibrance because insurance company does not cover, also wrote yesterday to Pfizer here in Czech republic to get some help and hope. But I have bad feeling this is the end.
( I am so desparate, there is a drug which can save her life however long bureaucracy discussion between two institutions will kill her I Wish to live in different country. 0 -
Retro, I get mostly CBD oil without the THC because I do NOT like to feel high at all either. Helps mostly with appetite when the ascites are getting bad. It took a few tries to get the right formula for me but it helps. I am now getting drained once a week which scares me a lot. Xeloda does not seem to be helping that. Have a scan on Thursday so we'll see what else it's helping or not. Pray I don't have to change yet.
Southern, I agree with Sadie that it could be referred pain from peritoneal. I get twinges over there when I am getting full...
Mirka, What a helpless feeling to have a med withheld due to bureaucracy! Ne ver give up hope. I pray they find a new Tx for her to try and it works like magic.
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Hello My Metsisters,
I just finished my 2nd cycle of Abraxane (3 weeks on/1 week off) yesterday. I am heading into my off week. I have no evidence yet that it is working, but my oncologist stressed we would have to wait 3 cycles to really give it a fair chance. The waiting is hard.
I'll get tumor markers drawn again next week (they went up again to highest levels ever after the first cycle, so I'm hoping for stable or down this month).
I'm continuing to get weekly paracentesis done for comfort. Like you, Artista, if I wait longer than that I am so miserable and hardly able to take nutrients in. I get about 3.5 liters/week drained. I'm still waiting on an indwelling tunneled catheter so I can drain my own fluid and hopefully be comfortable more of the time. The red tape on this process has been plentiful!
I take 300mg CBD oil/day in divided doses for general anti-inflammatory anti-cancer effects. I only use the THC (I vape it) when the nausea is severe or I am ready for bed or a nap (I just don't like the psychoactive effects). But THC is even more helpful for my nausea than Zofran overall. I did get some Zofran OTD which dissolves in the mouth and seems to work better than the regular tablets. It makes sense since my GI system is so slow! For that same reason, my palliative care team prescribes a liquid hydrocodone/APAP for pain and it is more effective than a pill. I am very careful with how much I use because I am so afraid of causing constipation or an ileus. Quite the balancing act we have, eh?
I'm feeling very optimistic about a couple of things I have going lately. The very low fiber/residue diet I've had to adhere to for months to avoid partial small bowel obstructions (SBOs) has been very distressing to me. I miss my fruits and veggies and can't even seem to get away with mushy-cooked peeled zucchini! On top of that I just can't take my supplements regularly because I can't fit them in my limited GI system. So....I started juicing again. I'd been wanting to do this for many months, but realized that what had been holding me back was that the juicer I had was huge, heavy, and cumbersome! It was great for the huge batches of juice I put up from my gardens/orchard, but not practical for everyday. So I invested in a nice Breville countertop juicer and in just 15 minutes every day I can prep, juice, and clean-up the batch for the day! I feel so good about getting these vitamins and minerals back into my body.
I consulted with my naturopathic oncologist (NO) a few days ago and we tweaked the protocol he has me on. He really likes that I am doing the CBD oil and juicing among other things. He wants me to continue with the mistletoe injections for now also I will have to order the new supplements he is recommending and try to work them in.
I am switching my "major cancer center consultation provider" from MD Anderson in Gilbert, Az to Mayo in Phoenix, AZ. This has been a long time coming as my relationship with the breast cancer specialist I was seeing at MD Anderson just never developed into a satisfactory place. I gave it my best shot, but was repeatedly frustrated. When I told my NO who I was going to see at Mayo, he was thrilled and said that he's worked with him for years and that he's a great doctor. I left a message for my primary medical oncologist (MO) yesterday telling him about the change and he actually called me at home at 8:00 last night to tell me he thought it was agreat idea. He also knows and highly respects the Mayo doctor. Both my NO and the MO asked if they could contact the new specialist before my appointment (2-8-18) to touch bases about my situation!
Of course I don't know what impact any of this will have on the cancer itself, but I know I feel better with these plans in place. And I really think my energy is a bit better overall.
I think of you all every day and hope the very best for each of us. Love, Orina
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Orina, your symptoms sound just like mine at their worst! I'm so sorry. The Afinitor has really helped me. I'm currently feeling pretty well. Knock on Wood! I, too, do the balancing act with pain meds, Miralax, no veges and as little fiber as possible. I have actually gained a little weight in the last couple weeks. It seems like when treatment works, it's like a switch gets turned off that causes all my cancer symptoms. I wish you great luck with your change in doctors. To have a doctor you believe in helps not just physically but also emotionally. Hope you are feeling better soon!! HUGS, Cathy
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Dancing, great idea about juicing and something I should try. I still eat raw veggies, salads ect but do notice I can get quite the belly ache. I also only vape some CBD with a little THC when I am especially nauseous and it works way better than Zoran for me. I hate getting the fuzzy head feeling on too much THC.
retro, I am soooooo glad you are feeling better. I hope the Afinitor works for a long time. Turns out I had a bad reaction with chicken pox like rash all over my body that would take a month to clear up. Had a scan today and wonder how the results will come in. I do know it does not seem to be helping the ascites. so who knows what the Onc will recommend.....fingers crossed
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My PET shows much decrease in my cancer all over! Woot. I have been changed to every other week of Gem/Cisp with a neulasta shot the next day due to missing several treatments from low counts. Onc is happy too. Pic shows how the chest area really responded.
Taking CW Everyday Advanced CBD and started really taking more THC. My nausea is almost nonexistent, when I do the combo. Still dealing with fatigue but getting better. All my other health factors are good, we always laugh I am the picture of health.....haha....or not
Just wanted to pop in and say hello. Give an update and hopefully give some hope where needed. Happy with things for now.
Today is a good day. ....and going to The Price is Right Live with my daughter today. Plinko, Plinko, Plinko!
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Milwmama- great news. Love to read when ladies have a good report. I love the price is right. Have fun!!
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Good news Mil! Maybe you will get picked for the showcase! Have fun!
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