peritoneal carcinomatosis
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Hi Rosevalley,
Up early with nausea again but not vomiting (no blockages for me, yet, fingers crossed).
Am so grateful that it can be quelled with remedies and food.
But the swinging and swaying and belly heaving isn't much fun.
My personal remedies for nausea include reglan, zofran, homeopathic nux vomica, ginger, choosing what and when to eat, loose clothing (hip huggers and drawstrings for the nausea and ascites), laughter, touch and relaxation of my belly and diaphragm.
Oh yes! Draining of the ascites is a must. Have been doing about 1-1.3 liters daily since I misread your email and glad I did!
Hope that your misery was momentary and that you recover balance. May the faslodex continue to work for you! We all benefit so much through your being and sharing of yourself, dear Rosevalley. You've changed my life in such valuable ways - impossible to say all.
Thank you and love, Stephanie
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Well no puking yesterday, yay. I was very careful what I ate. I didn't eat much either. Then last night I got diarrhea.. up at 2 and 5 with it. Ugh.. Something in my gut wants out. I seem to be ok right now. Play everything by ear or gut.. ha ha. Well got to go. Taking the kids to deaf church. It's an experience for sure. I am loving all this sunshine. It's good medicine sunshine. May your nausea leave Stephanie. I am glad the draining helps. I feel better after getting the fluid off too. Always a bit weird right after then I lay down and whatever fluid shift occurs gets fixed.
May we all be free of suffering and happy. Love to you all.
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Evelyn, Oriole, Judy52, Starbright, Hummingbird and Stephanie I hope you are all doing better. I hope the ports are behaving and the taxol is working. I hope things are better for everyone. I continue to drain less amounts, tumor markers are down and the N/V is much better. Faslodex is working. I pray and hope whatever you are trying for treatment is working for you too. May we all be free from suffering and be happy. Good night all it's nearly 11. Have a good weekend.
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Good morning everyone!
Rosevalley, thank you for moving this thread up into view again. I just love reading that you continue to improve. What joy in unexpected reversals like yours.
And I wish the same for everyone - increased health and well-being, ability to participate in the life that matters to you, alleviation of symptoms that prevent participation. Heck, I'll go for broke - cancer cured! Why not wish upon that star?
I seem to have hit an almost plateau - a slow slide toward death that's not dropping me rapidly off life's edge. Am more tired, weak and thin. Have more symptoms, but I've adapted spiritually, mentally and emotionally and am doing about as well as I ever do with my "ailing, failing body". I'm honestly having a better time in my life than many able-bodied people are in theirs.
I've recently recommitted to engaging my words wisely for healing and helping...acknowledging they are powerful beings to align myself with. This commitment renews my meaning and purpose for this period of my life. So grateful!
wishing wellness and well-being for all, Stephanie
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Rosevalley, thank you and I am So very happy to hear that you continue to improve and Faslodex is working!! May it work for a very long time!!
Stephanie, you are always in my thoughts and prayers. Wishing you continued peace and strength. Thank you for all the support and well wishes you constantly give us.
Hoping everyone is comfortable and able to enjoy the day in some way.
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Hummingbird- how is the taxol working? Is it turning out to be a doable treatment for you? Has it controlled the intestinal issues - can you eat better? Faslodex has loosened the cancer grip on my intestines so I am better able to eat and sustain myself. I am walking around the block daily and have more energy. I still have ascites and still drain every other day but the amounts are less.
I am sure others reading this thread with the same issues as we have, are asking the same questions. If I have run through faslodex, or drug x and then ask what next? I am sure your input and anyone else who is in the same boat can add to the discussion of what do I try next. What might work and what to expect. Hummingbird I would love to know how you are doing. I pray you are doing well!
I am wishing you all peaceful days and slumber light! Much love to all in our peritoneal carcinomatosis community. I hope to hear how each of you are doing so I can cheer you on and learn about your journey. There is so little written on this topic that we do pave the way for others.
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Rosevalley, Yes - Taxol is very doable. I am on the standard dosage and schedule for stage 4 - 3 weeks on and 1 week off. The se are much less than the se from Taxol given for early stage. The pre-meds can be adjusted and reduced after the first few infusions, when there is not a danger of allergic reaction. I was recently experiencing a burning sensation under my feet at night, and I did have a few rough days of diarrhea, but I will honestly say that this is not bad at all. Just a little fatigue and no nausea whatsoever. Lost my hair, but Taxol has completely reduced those terrible, painful symptoms I was having, and my belly is no longer swollen! It was huge and hard, and now it's soft! I know that without Taxol working so well, I would be in very bad shape. I will be having scans soon, on April 18. I'm hoping and keeping my fingers crossed that I'm at least stable, because I'm feeling SO much better after 10 infusions that I just want to stay on this treatment! And my new port is working so well - I love it!
I agree that it would be helpful to hear from other ladies with these belly mets. What treatments have you tried? What is working for you? One very disappointing thing that I heard on Tuesday from my onc this time is that when she spoke with the gastroenterologist I had seen, the only treatment for the bowel kinking I had, would be to place a tube in my stomach to release stool and gas. Even my onc said she's not happy with that! And I'm Really not happy with that!! There is also the danger of intestinal rupture when bowel twisting is going on. I get really scared now when I think something could be starting up again. This certainly is terrifying at times!
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Hi Ladies, I am not currently having any of these issues but read up on this thread just because I like keeping up with you ladies. I just wanted to say hello and send some hugs your way. Living, you are too much with your positivity. I so enjoy reading your and Rosevalley's posts and get a lot out of them. Hi Hummingbird! I am so glad to hear your current Tx is treating you well but so sorry the bowel issue is giving you hell. I hope that improves soon or at least stays stable and stops giving you trouble. Best to all, Happy Spring...
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Hi artist, thank you so much - it is very nice of you to keep up with us on this thread and send hugs and good wishes. You are always so caring and supportive. I hope you are doing well and enjoying Springtime!
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Hummingbird- that does sound promising! The swelling has gone down and no need for the tube. Yay! I am so glad the port is working well. I love mine and it behaves well making life easier. I took the dose dense Taxol -hit high amounts and hard, every 2 weeks before I was stage 4 and it was difficult. So I knew this stage 4 treatment would be less toxic but never having experienced it - I didn't know. I am happy to hear it's not bad and with the exception of hair loss and some neuropathy and fatigue. I am happy for you. Wonderful that the symptoms have subsided and life is better. I feel the same way with faslodex. My oncologist said she would add Ibrance to the mix next. So at least I have some idea of what she is thinking.
Hi artistatheart. Thank you for the support and well wishes. This is kind of an unusual thread since not many get this complication and sharing treatments make for an easier time, less anxiety and worry.
I wish you all a great day! Much love to all and enjoy this Spring weather!
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Rosevalley, Yes the sharing of information definitely makes for less anxiety and worry. Just all the support here is a major lifeline for me and has kept me sane! (somewhat.....LOL!) Hummingbird, I am doing pretty well and have a week off for spring Vacation to regroup and get some things done. Glad you are feeling better as well. Thanks and Happy spring to all!
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Rosevalley, I found Ibrance to be the easiest treatment so far - and I remained on the highest dose of 125mg the whole 6 months. With Femara though, not Faslodex. My onc told me that most women get a dose reduction because of low white blood cells, and then many do very well with the lower dose. Glad to hear your onc has a plan in place for whenever you need it. Hope we both continue to feel better and our current treatments work for a very long time!!
Artist, enjoy Spring Break!
Best wishes to everyone!
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Thanks Hunmmingbird! It sure went quick. Next break will be for the whole summer and I plan to spend time considering going out on disability. I feel I am spending my whole life working, working, working. There is so much more I want to do...
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just wondering if any of you ladies suffer from gerd that is not getting better even with nexium 40mg 2x a day . I had ILC 8yrs ago and have stomach problems for long time but the last few months the pain is excruciating and penetrates into my back right up between my shoulder blades and into my head causing bad headaches.I am almost afraid to eat sometimes for fear of the pain I had an ultasound done found two small stones not blocking anything and a solid 2cm hypoechoic area left kidney which had changed slightly from 6mnths ago. Friday had ct scan abdomen so just waiting for results. I am concerned about mets any info would help. Thanks for your understanding . God Bless each and everyone with this horrible disease.xx
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artist, if you feel you should go out on disability, definitely go for it! I agree - why wait! Good luck with making the decision.
boobuddy, I am so sorry to hear of the severe pain you are experiencing. Very glad that you had a CT scan done of your abdomen. Hopefully when you get results - it shows that it is totally unrelated to cancer. I definitely understand how frightening this is to you. Hoping and praying for you. Please keep us posted.
I saw my onc yesterday to discuss my recent scans, and she was very happy! Some decrease in the belly mets and now only mild ascites, very slight decrease in the bone mets, and holding stable with hydronephrosis (swollen kidneys due to pressure from tumors on my ureters). I was very concerned about that but - My labs were perfect and I don't have a problem urinating, so my onc is fine with it. My TM's went down too! So I get to continue with Taxol on the same dose and schedule and I am so glad about that - it's working!
Wishing all of you good days - I think of you frequently.
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Hi bcobuddy,
I couldn't tell from your note or signature whether you're dealing with mets or GERD. I know that my liver swelling and abdominal swelling from ascites have caused terrible GERD in the past, but now that I'm draining the ascites daily (thank you, Rosevalley!), I have fewer problems with that and uncontrollable hiccuping (my nausea causes hiccups rather than vomiting).
GERD can be caused by so many different things, including abdominal mets and ascites, but if those aren't showing up on scan or by clear signs, then it's hard to know for sure what's causing yours. Or what an effective treatment/approach might be.
Good luck sorting this out. I hope that between your caregivers and you, you can find some practical solutions to this miserable symptom.
warm healing wishes, Stephanie
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Dear Hummingbird,
While complete response to treatment is great, partial response and stable are good news too in the advanced breast cancer world.
It sounds like the Taxol is good for you and tough on cancer. A tolerable and effective treatment is a wonderful thing. I'm glad you've found your healing allies and hope you continue to flourish with their aid.
Continued healing thoughts for you, dear Hummingbird, Stephanie
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Dear Stephanie,
Thank you. You are a caring, supportive, wonderful friend. I want you to know that you are in my thoughts and as you are entering a new phase, I hope you remain peaceful and comfortable. You are a strong, beautiful lady. Best wishes, Stephanie.
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Hummingbird, That is wonderful news! Gave me the best smile of the day.....Any improvement is always welcome, but sounds like you got it on several counts! May it continue for years to come!
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Humminbird it sounded like mostly good news and declining markers and the plumbing all works! Taxol was hard for me so i am in awe you are doing so well. May it last and last. Thank you for telling me that Ibrance was easy for you. It's next for me.
Boobuddy- good luck sorting it out. Gal stone issues maybe? GERD as Stephanie pointed out. I think they need to look some more.
I got mostlygood news at the oncologist. The markers dropped another 40 points, not a big drop. Labs were good. Xgeva shot hurts and the faslodex shots were fine. So we stay the course until something happens. The back pain is the same. I wish the ascites would slow down to nothing and it has slowed. I drain less over more days. The color is the same yellow. Weird. I was kind of hoping for a bigger drop and to feel better less ascites and being able to eat roughage and vegetables. Not yet. I guess we take what we can get right?
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artist, thank you! And I hope you are feeling good and getting good results. I try to follow some other threads to check on you!
Rosevalley, thank you - and I am so happy to hear of your good news! Markers dropped, good labs, and stability - I'm so glad to read that! I know exactly what you feel though. I sometimes say to myself - am I just getting greedy now? - when I hope for even better results and I get a little disappointed. I agree - we do have to take what we can get and I try to move on and be happy with that. If we are feeling better, we have to enjoy that!!
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Hello Ladies, with having peritoneal carcinomatosis and on Halaven still getting fluid. Has anyone else had this issue? I been on it since Feb. and having thoracentesis and paracentesis every 3-4 weeks. Three years ago the faslodex cleared it up for 30 months. Now on new treatment not clearing up. Starting to make my mind wonder about Halaven although tumor makers are down.
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Hello everyone,
My mother who has peritoneal mets recently went into acute kidney failure due to issues with urethral stents. They went in and changed out the stents with ones bigger in diameter. Has anyone had a similar experience? Her creatinine and GFR levels are not quite back to normal and I'm concerned it damaged her kidneys. Her surgery was 12 days ago now when her levels started coming back down. I wonder how long it takes if they are going to return to normal? She has been on Faslodex for 3 months. Tumors are putting pressure on her ureters but CT shows no advancement in her tumors. Next PET scan is June 14th.
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Hi Livnonhope,
I'm so glad you're back in touch. I remember you from back in early March and have wondered what happened.
If you don't remember me, I have peritoneal mets and ascites too.
I don't have kidney involvement that I know of, but I'm no longer having my cancer monitored by scans (been about a year) or blood tests (been over 6 months), so I wouldn't know if I had a small problem there. Only a big one. Knock on wood!
I hope someone can answer with personal experience about stents.
If you don't get a response on this thread, try starting a new one called kidney stents.
It sounds like the faslodex is working to control or stabilize the cancer. That's really good news!
Fingers crossed her symptoms will clear up and allow your mom a healthier period of life.
Am sending a warm healing hug and look forward to hearing from you again.
loving kindness, Stephanie
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Longtermsurvivor,
Thank you for your encouraging words and input. Your story gives me a lot of hope for my mother that she can still live a long life with this horrible disease. Your strength is incredible!
The people on this site have helped me cope in so many ways as well. I always tell my mother about the women on this site and I think it helps ease her mind. Some days are so hard all I can do is cry. My mom is so amazing I hate seeing her suffer. I'd trade her places in a flash.
My mother is doing well besides the hiccup with her stents. I really pray her kidney function returns to normal because I kno it can affect what treatments she gets in the future. Being only 46 I hope her youth is on our side. I was so relieved to hear the faslodex appeared to be working. We will see on her upcoming pet scan for sure.
Thank you again!
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Livnonhope, I'm wishing the best for your Mom on her upcoming PET scan. I was hoping someone would come along who has kidney stents and could give more info from experience. It's a concern of mine also, because I also have tumors pressing on my ureters and this has caused my kidneys to swell. But, so far, I am fortunate in that my labs are perfect and I have no pain. So no talk of a need for stents at this point. I'll be thinking of your Mom. Good luck. Please keep us posted.
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Hummingbird,
Thank you for wishing us good luck! Even though it sucks I am glad to hear someone has a similar diagnoses as my mother. I am also glad it has not been recommended for you to have stents placed. My mothers labs were perfectly normal but her oncologist wanted her to get the stents for preventive measures just in case it started to mess with her kidneys. Unfortunately, the stents caused a lot of issues. I am an RN and my view on stents is biased because I have seen them cause people a lot of grief but I completely trust my mothers oncologist. She is very thorough and a very caring doctor. I have seen so many doctors without her caring nature. I hope you do not mind me asking but was your reoccurrence on your ovaries? It is encouraging to see you are still going strong since your diagnoses of reoccurrence in 2013. I am still in the stage of shock and depression as far as my moms diagnoses goes. Good luck to you and may your treatments kick cancers butt! Lets keep in touch.
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Livnonhope, thank you! You asked about my reocurrence - although I did have mets to my ovaries (had them removed), my first mets were only to bones. Then the belly mets came. I am so glad that you completely trust your mother's oncologist. I know that you are very upset about your mom, and having such a great onc is so important. I know how you feel - my mom also has MBC, and I get sad and upset and I worry about her too. Wanted to mention also that my Mom has had kidney stents for 8 years now as a result of kidney problems from high blood pressure and heart disease (had bypass surgery) - not because of her bc. Hers are working fine. I hope very much that your Mother's new, larger stents work well and that her kidney function returns to normal very soon. Good Luck - wishing your mom the best and hoping her PET scan in June shows great results! I hope also that you feel less worried and less upset and can enjoy each day. I will be thinking of both of you. Please keep us updated.
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Hi everyone,
I haven't written for a while because I've been having such lovely medical adventures. I thought it might be helpful to someone out there to detail them here, so here goes.
After it became clear that Ibrance had run its course for me, this forum helped me to decide to try taxol (rather than everolimus and exemestane) next. Hummingbird's success is very inspiring and here's hoping taxol's continuing to keep her stable and bringing her relief!
My treatment regimen was to be much the same as what Hummingbird described - lower doses of taxol once a week for 3 weeks, and then one week off. Ah, the best-laid plans... I went in for the first infusion on a Tuesday in March. They pumped in the pre-meds and then started the taxol at a slow rate. My understanding is that they wanted to give me 200 ml total, ultimately doing the infusion at 100 ml/hour. However, they started at 20 ml/hour, slowly increasing the rate of the drip every 15 minutes or so. The nurse had just increased it to 80 ml/hour when the palms of my hands turned bright red, my face got very flushed, and my head felt really peculiar -it didn't hurt, but it felt somehow very full and was getting "fuller." My husband ran for the nurse who rushed in and immediately turned off the drip. And just like that, in an instant, all those symptoms went away. "You're a reactor," commented my oncologist. (wow, nuclear...) So they backed off the rate and started the drip again. Well, we'd started late in the day, so there wasn't enough time to deliver the full dose before the clinic closed, which meant that I had to go back on Friday for a repeat performance. Meanwhile, I felt like I might be getting a cold, so I did my usual thing of taking zinc, vitamin C, and sudafed, and the symptoms obligingly went away.
Friday seemed to go well. There was just one time, again at 80 ml/hr, when my palms started to redden up, but a stop and restart of the drip at a slower rate took care of that. They managed to get the full dose into me. However, I woke up Saturday morning with "puffy-face." My eyes, especially were amazingly swollen. Called the clinic and was told to go in to "Urgent Care," where they took blood and consulted with the oncologist on call. Interestingly, the conclusion was that the swelling wasn't related to the taxol and probably was because of some kind of viral infection.
My oncologist decided that I needed to see an allergist, so the first full week in April became a medical whirlwind. On Monday, I had a port placement, on Tuesday I met with the allergist, and on Thursday, at his recommendation, I had my first "desensitization." This is an inpatient procedure that, by playing with dilutions and administration rates over time, is supposed to get your body to tolerate the infusion so you can go back to the outpatient setting. The nurse who administers the drug is specially trained and it's a one-on-one dance - I was her only patient for the full 10 hours that it took. It starts with a "3-bag" regimen. After the pre-meds, they infuse a 1% solution of taxol at various rates for some amount of time. Then they change bags, and drip in a 10% solution. Finally, it goes to 100%, always starting slowly and ramping up the speed. BTW, the allergist felt that the puffy-face event occurred because my immune system was somehow agitated by reacting to the taxol and couldn't just blow off whatever viral thing was going on in addition.
At the end of the day, the covering oncologist from my oncologist's practice came by and cheerily delivered the news that because the desensitization process uses 3 weeks worth of drug, I wouldn't have to come back until the end of April. What??? What happened to that nice, well-tolerated low dose of taxol? I was not pleased, and learning about this after the fact really ticked me off.
While on Ibrance, my small amount of ascites went from moderate to a large amount of (read "intolerable!") ascites, so I have now become intimately familiar with paracentesis. It seems to accumulate to the uncomfortable level in about 3 weeks, so I've settled into a pattern of desensitization on Thursday, paracentesis on Friday, then a 3-week hiatus. I just had my fourth desens - I had two 3-baggers, and now have had two 2-baggers. My oncologist will talk to the allergist to see where we go from here.
I had high hopes of the taxol, and can't really tell how effective it's being. The cancer marker went from 324 to 270 after the first desens, which was a nice leap, but this time it only went down to 262, and the ascites hasn't seemed to abate at all. However, I haven't given up on the taxol yet - hope it hasn't given up on me!
Wishing you all comfortable days and peaceful nights, hoping there's joy and gladness in there for you, too!
-Erica
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Erica,
Whew!!!! You have been through so much! I am sitting right now in the chemo waiting area waiting to get called for my 18th infusion of Taxol and I feel so bad that you have gone through those awful experiences. I was thinking at first that you were allergic to the Taxol, but seems you also had other things going on which made matters worse. Then to find out you will get 3 weeks dose while thinking you were getting the one weekly low dose? I would be upset too! That's a big difference.
I want to wish you the best of luck and I'm hoping and praying that now that you've had four sessions of Taxol, it now kicks in and brings you relief. I'm very sorry to hear you have a large amount of ascites. I'm glad that you are not giving up on Taxol. Taxol didn't seem to do anything for me until after the third infusion. Then I began to feel better and so far it's working well for me. I'm hoping very much for the same good result for you too. And for a long time! Please keep us posted.
Best wishes to everyon
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