peritoneal carcinomatosis
Comments
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Erica how weird that dosing?At least it appears to be working. I would think that's a hard road to go. Each paracentesis is pretty expensive around 3-5K depending on where you go. There are implantable drains that allow you to pull off the fluid yourself at home. Both Stephanie and I have had one for 10 plus months. The ease and relief of removing ascites is wonderful. I highly recommend the Pleurx or Aspira catheters depending on your insurance coverage. Then you just remove the fluid yourself in the privacy of your own home. Instant relief.
Hummingbird- I went in and got my first palliative dose of Taxol today and 500cc of NS. It's been hard for me to drink enough. So far no reaction or side effect except feeling very tired from the infusion of benadryl. Not much jumpy jazzed feelings from the dexamethazone. No puking but I have only eaten crackers, clear boost, tea and water and part of a buscuit. More weight loss another 5 pounds in 2 weeks. We will continue the once a week palliative dosing for 3 weeks then a break. My cancer responds very well to tumor markers So I hope they go down, the N/V and ascites lessens. I may or may not lose my hair got a couple of hats in case.
Lovingkindness to all you ascites sufferers. Fortitude!! rosevalley
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Rosevalley, I posted on another thread (Rosevalley thread) that I am so happy to hear that you had your first Taxol infusion and are doing well with it! You might be hyper tomorrow, but it's nice having more energy! As far as weight loss, I am gaining steadily since starting Taxol. I wouldn't mind losing a little now! I am hungry all the time and I still try to follow the low fiber diet but I eat a lot! I hope that the Taxol takes care of things for you so that you can eat more and keep it down. Best wishes. Praying you get good results!
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Sending love and good healing juju for everyone.
My belly continues to swell with ascites and is knotted with tumor now, but amazingly, I'm able to eat, digest, pee and poop. And sleep about 14 of 24 hours.
I live like a baby or a kitten - but without periods of playful awakeness.
Still, I'm existing in joy and so very grateful, Stephanie
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Erica,
Thanks so much for getting back to us about what's happening with you.
Your medical misadventures sound harrowing and I'm sad that you've suffered so much to get the treatment that seems best for you. Fingers crossed that the desensitization works for you and you're able to go to weekly dosage levels and an out-patient infusion procedure.
Also, if the ascites keeps building up and you just can't take one more paracentesis procedure (each with risk of infection, puncture and other complications), do consider an indwelling drain. They're implanted by interventional radiologists in an outpatient hospital procedure and will allow you to drain at home. There are two main systems - Pleurex and Aspira. The Pleurex works via vacuum bottles and people complain that it's painful because of the pulling. Since August 2015, I have had the Aspira system which is a gravity system with at small pump. It's so improved and extended my life.
Ascites suck vital life energy and fluids. Going to the hospital to be drained is a drag and traumatic too. It might be worth it for you to get off that merry-go-round at some point.
Erica, one thing I don't know is whether your treatment depletes your body's immune system and increases your risk of infection by either paracentesis procedure or indwelling drain.
It would be worth it to speak with your palliative care doctor or oncologist before undergoing drain procedures...maybe treatment has changed your body?
Many healing wishes, Erica, Stephanie
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Stephanie, I want to thank you that with all you have going on, you continue to be so supportive to everyone and provide excellent information. You are always in my thoughts and prayers.
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I second that thought Hummingbird! I don't know how Stephanie does it. With all that she has going on to be present and helpful with so many. A giving spirit.
Hummingbird I have a question for you. When you first started getting Taxol did it cause bone flair pain? Tingling and aching in your bones? Along with weird gastric feelings?
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Rosevalley, no - I didn't have any tingling or aches or pain from Taxol but the first 2 months, I did have days with episodes of diarrhea which has since become much less. My MO said she thinks it was just everything clearing out! How are you feeling now?
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Hummingbird- My legs, hips and back ache and kind of tingle. It's like the bones are hurting. I had this before when I had wide spread bone mets and faslodex kicked in. I just didn't expect it with Taxol. It must be doing something. I suppose this is good. I can eat a little, still feel way too full and bloated, but not nauseous. All in all I am encouraged. I read that one gal has been been on Taxol for several years with good results. Wow. I slept ok yesterday, steroids wore off and that helps. It's wonderful that you have had 18 treatments and can eat and carry on and need no draining! Lucky you. I hope it does that for me. We are all so different and it is hard to tell how are bodies will react.
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Rosevalley, so true! I was in two clinical trials that were very promising for me, but turned out to be disappointments. My MO always said from day one that chemo wouldn't work for me, but so far Taxol is working. I just have to hope and pray it works longer!! I'm glad that you at least have no nausea now and can eat a little. That Is encouraging!! Let's keep our fingers crossed and wish for the best!
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Just dropping by to say hi!
And sending good wishes and healing light to this community of belly buddies!
warmly, Stephanie
PS, I'm doing really well considering everything. There's just a lot to consider.
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Hi ladies,
Had scans on Wednesday after having Taxol infusion #20 on Tuesday and, unfortunately, I have had progression. Increased bowel and belly mets, increased ascites, and now more than 10 liver lesions. Up until now, I did not have liver involvement. I feel like there are so many things going on now that I don't even pay attention to the extensive bone mets!
I will see my MO on Tuesday to discuss which treatment to move on to. I know that you will understand when I say that a big worry I have is the possibility of having to deal with that severe pain and swelling that I had in January and February. I hope something is going to work for me quickly to avoid that! I just can't imagine going through that again.
I am so glad to be able to come here to share information. Hoping that you are all comfortable and enjoying each day!
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Hummingbird I hope your doc has something up his sleeve. Praying for you. Would Abraxane be in the mix or is it just Taxol in protein so it's off the table? I hope they find something soon before the ascites goes full circle.
I wanted to ask you if you had any eye sight issues when you were doing Taxol? My eyesight seems to be effected by the Abraxane. I am not sure if this is temporary or do I wait and get my eyes examined? Will the chemo make it worse? So many questions. I know when I drive I am having a hard time seeing the signs clearly and things are a bit fuzzy. I drive myself Tuesday and see the NP I will ask about this.
Wishing all my peritoneal sisters peace.
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Oh Hummingbird, not the news you or we wanted to get, but here you are.
Like Rosevalley and me, you understand how it feels to progress in that region of our bodies and how very uncomfortable and life-limiting it is.
Also, it's got to be shocking to face liver mets too. Be sure to post in that topic here too - great group with lots of experience to share. https://community.breastcancer.org/forum/8/topics/...
This past week, I had two days that my implanted drain didn't work and I endured the quickly refilling ascites (have drained on average 1 liter daily since mid-August 2015). It reminded me of places I don't want to go either. Fortunately, the hospital fit me in quickly, gave me a clot buster tPA and set me on my way to drain. But, once it's happened, I know it can again. And I know how quickly I could get to that unwanted place.
Hummingbird, I'm offering love and light for your well-being, for your next best treatment to arrive soon and that you achieve a quick response to it, forestalling worse symptoms of worsening disease.
May you also find the inner strength and outer support to face all challenges sure to come your way.
deep and enduring loving kindness for you and all of us, Stephanie
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Rosevalley and Stephanie, thank you so much for your concern and support.
Rosevalley, I didn't have any eyesight issues from Taxol except that maybe the first month if I'm remembering correctly, my eyes felt dry at times. But then as I continued, they were fine. I don't think Abraxane will be considered for me - but I will know on Tuesday.
Stephanie, I got choked up when I read your post. You are so very caring and thoughtful even while you are facing much worse than I am. I am so sorry to hear of what you went through the past week! How frightening! I totally understand the worry of possibly facing that again. I will hope and pray that that never happens to you again. Wishing you strength and comfort. You and Rosevalley are always in my thoughts. I am so grateful to be able to come here. And yes, I will also post on the Liver mets thread. Just have to get used to that now I also fit in there!
Best wishes to all.
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Hummingbird, I am so sorry that your scan showed progression but glad your onc is on top of everything and figuring out your next treatment. I have found that one of the hardest parts of this disease is when a treatment stops working and starting over and adjusting to a new plan. It is so incredibly frustrating. Rosevalley is so right, we all need to find the fortitude and strength to deal with these tough situations.
I met with my onc last week and she told me that they are starting to get some positive results with immunotherapy in trials with breast cancer patients. She also said that while it is not yet FDA approved, she is hearing that some insurances are approving this treatment and some are getting compassionate usage. I do not know if this is a possibility for you, but thought it might be something to ask your onc about.
I will be hoping to hear positive results from your next treatment. Wishing you well!
Oriole
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Hi ladies, I am not in the "bellie buddie" group but have gained so much from each of you, I just wanted to send my best and say I think of you all the time. Stephanie, Rosevalley and Hummingbird, you are ALL so generous and compassionate with your insight and information. I can't begin to tell you what a lifeline each of you has sent me on many different occasions. Every time I hear of some new challenge each of you has to endure it hurts my heart. How you remain so positive and full of optimism is a true testament to the human spirit. All I can do is offer my prayers and best wishes that something comes along to keep helping you along. Sending you loving thoughts....
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oriole, thank you for the good wishes - and I agree that there is so much frustration and anxiety not knowing what the next treatment will be, what the side effects will be, and if it will even work for a while! Also, what symptoms will I have from the mets while I wait?! Thanks for the immunotherapy info. I will definitely ask my onc although, and I could be wrong, but I read that there has been more success with triple negative mbc and not with er+ in the immunotherapy trials. But I will ask.
artist, thank you too for always being supportive to everyone and thoughtful and caring. I hope you have good success with your current treatment. I will be joining in on the liver mets thread, and I still keep up with the Ibrance thread for my Mom - so I know you have had a disappointment again with your liver enzymes. Hoping and praying that the lowered Ibrance dose does the trick for you for a long time! Best Wishes
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Thanks Hummingbird, I am looking forward to seeing you more often but very sorry it is because you are joining the "liver mets" thread.
I have also heard, at my 2nd opinion appointment at UCD, that immunotherapy has shown more response for Triple Negative than ER+ Perhaps the next thing they figure out is how to tweak the Tx for ER+......Take care!0 -
Thinking about having a drain put in. Is it true no showers or bath with the drain? My last para was a nightmare! In the works for immunotherapy will know for sure tomorrow if it is approved. I figure what do I have to loose.
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Hi Sally K.
Maybe you'll join the drain club too!
Showers are fine!
Baths, swimming and hot tubs aren't though. No soaking.
I dress my exit site with a small piece of medihoney calcium alginate http://www.dermasciences.com/medihoney-products
and cover it with a couple layers of paper tape. Was sent home with huge gauze and tegaderm bandaging system that led to latex and adhesive sensitivity - looked and felt like contact dermatitis - poison ivy.
For 11 months I've had an Aspira system that uses drain bags that use gravity and a small (optional) hand pump, as contrasted to the Pleurex system that uses vacuum bottles. I've heard from others using Pleurx that the vacuum can cause abdominal cramping.
btw, I misunderstood a friend here and started draining daily (1 liter) rather than every other day (2 liters). Much more comfortable than allowing the fluid to build up.
The tube did get clogged with clots and a clot buster was administered last week to break them up and restore flow. It worked!
Sally, please ask any questions while you have us on the line!
warmest of healing wishes, Stephanie
btw, I have ductal not lobular cancer, but know it's mutated a lot over the many years it's been fomenting in my body.
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Stephanie, not wanting to join the club...lol. Just don't think I can do the para much more. The last one 2 weeks ago was very painful, swelling with a large lump in my side. Dr. said I had a lot of scar tissue. Progressing on Halaven and the fluid is getting worse also have plural effusion. Going to ask my dr. next week about the drain. Hope new treatment will dry it up as it has in the past. Went 3 years with no fluid.
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Hi Sally,
I had the indwelling abdominal drain inserted in an outpatient procedure at the local hospital. They offered happy medicine, but I took only a small amount, because I wanted to watch.
Was there for about 4 hours, but the procedure lasted maybe 30-45 minutes - the rest of the time was intake, accessing my port, waiting and recovery.
It is easier than going for repeat paracentesis procedures!
And there's less chance of complications and infections.
The two systems - Pleurex and Asplira - work in pleural effusion too.
I had a VATs pleuradesis to seal the pleural linings together with talc powder - a much bigger procedure with a long recovery period.
warm hug, Stephanie
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Oh, belly buddies, for my sake, I'm glad you're here - for yours, not so much.
Hummingbird - I'm SO sorry that taxol didn't do a better job for you. I was so happy that it was having a good effect and am so bummed to hear the latest results. It's just not fair (but when is stupid cancer ever fair?). I'm quite interested in what your next treatment will be. Please let us know.
Rosevalley - my experience with taxol is that for about a week after an infusion, the bones in my legs hurt from the knees down - knees, ankles, feet - they ached to the point that it interfered with sleep. However, I found that ibuprofen and lorazepam taken at bedtime mercifully allowed me to get comfortable enough that I could nod off. Here's hoping that taxol works for you for a long time, that the side effects are minimal and can be managed comfortably.
Unfortunately, after 5 desensitization sessions, each a 3-week dose of taxol, with an acceleration of ascites accumulation and a climbing cancer marker, we've decided that taxol isn't really working for me. A long session with my second-opinion oncologist to ask advice about the next treatment was quite an education. Basically, as you all probably have figured out in your long treatment experience, there's no way to predict the right next choice - there's no way to tell prospectively - you can only tell retrospectively if a treatment is right. So, we're randomizing here, gals. And different docs have different favorite meds. My oncologist thought we should try exemestane and everolimus, and Dr. Second Opinion said that was a perfectly valid choice, but he listed a bunch of other chemotherapy agents that could potentially work in my (our) situation. Which means that if e/e fails, all is not lost.
Stephanie, thank you so much for all your information and wisdom, especially about the drains. At first my oncologist seemed to indicate that we didn't want to go there, but since I've been needing paracentesis about every two weeks, she's been hinting around that it might be time. We're going to see if the e/e treatment makes any kind of difference in a short while. If it does, and the ascites abates, then no drain. If not, I'll get to join the drain club, too! I love that your body can perform all its major functions despite the invasion. Digesting, peeing, pooping - all good. Keep it up!
Now, my dears, on Sunday, July 17, I'm having a Cancer-Be-Gone party. A good friend who is a medievalist found an Anglo-Saxon charm that is supposed to get rid of wens. In medieval times, recitation of charms with various ritual actions, was pretty much how medicine was practiced. Anyway, my friend decided that this charm ought to work against cancer, too. We named my cancer Wen, just so it would know that the charm was addressed to it. At 5:30PM, my crazy friends will assemble and recite the charm, in old English (or is it middle English? I can never keep it straight) led by my medievalist pal. We will be reciting it for all of you, too. It may seem a bit silly or frivolous, but the focus of love and support is very uplifting and healing and I intend to send it your way.
good night all - wishing you peaceful sleep and comfortable days ahead
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rara avis, what a great post! So much of what you wrote is exactly what's going through my mind! And exactly the experience I had with my MO yesterday. First I want to thank you for thinking of me and, I agree, - this is terribly unfair to all of us! I'm very sorry to hear that Taxol did not work for you. And as you said - there is no easy decision now, no way to correctly pick the right next choice. I think that the party you are having on Sunday is wonderful and I thank you for including us in reciting the charm for us too!
I want to share information from the visit with my MO yesterday. I could tell that she had given everything a lot of thought and research. There is a clinical trial that I qualified for which is using a drug that targets 2 of my known mutations. Last year I took part in a similar trial which targeted 2 other mutations I have. It was a brutal protocol with a huge time commitment and did not work at all for me - I had progression (ovaries and malignant ascites) after just a few months. Apparently my cancer just worked around the drugs. Being that I already have discomfort and my MO is also concerned that things may quickly get worse, we both agreed that the clinical trial is out, especially that it would require a one month wash out period which is too long for me to be off treatment. So then we discussed her 2 best chemo choices for me. Doxil and Halaven. We talked about the pros and cons of each and she did slightly lean towards Doxil, so I agreed and went with it. I already had my first infusion late yesterday!!!! I was very nervous at first because I wasn't expecting it and knew nothing about Doxil, but I did fine. I'm always scared on the first day of a new treatment. And as rara said that all is not lost, my onc said the same - If Doxil doesn't work, then we move to the Halaven. I always say, sadly - this is all a crapshoot!! I forgot to ask about immunotherapy trials, I got so caught up in all of this - but I will ask my onc next time.
Continuing to hope for the best for all of us!
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Rara, I adore rituals of all types and this is a new one to me...thanks for giving me a window in. And for including all of us in the charm!
How appropriate that you're doing it while the sun is still in the astrological sign of Cancer - the crab with its claws in us.
May we all be released from suffering.
May we find healing in love, laughter, hope and all good medicines.
May joy enfold us in its warm embrace.
much love for everyone, Stephanie
P.S. Hummingbird and Rosevalley, am surrounding you with healing light as you step into your new chemotherapy treatments.
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Well it appears Abraxane isn't working as planned my tumor markers jumped 134 point to 824. Crap. I was doing so well and was so happy. I thought I will get through the summer without puking. Taxol works great. Abraxane not as well. I had all kinds of trouble yesterday evening with reflux and heartburn from dinner. I had to sleep in the chair for relief. Ugh.. here we go again. I will say the drain is the BEST and I love taking the fluid off and feeling more comfortable. It's easy and YOU decide what to do, when enough pressure and bloating is enough. I miss taking a bath but showers are fine. I don't even cover the dressing as it's enough and works during showers. I LOVE THIS DRAIN. It's heaven.
Hummingbird I wish you luck with Doxil. It didn't work for me. I had 2 doses and progressed on both Herceptin and Doxil. I guess we go to Taxoterre or Xeloda. I tried that back in Dec when the intestinal stomach invasion started and puked it up. Landed in the hospital. I threw up the Ibrance too couldn't tolerate that at all. Hard to throw up pills that cost 475 each. ugh
May each of us find a treatment that works. sigh this is hard. Peace and lovingkindness to all of us suffering.
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Me too Rosevalley and Hummingbird. Praying for you two to get a freaking break. rara, The ritual sounds awesome. WEN be gone!
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Hummingbird, our oncs sound very much alike. I really believe that she has kept be going the last four years. My lymph node mets in my abdomen were found in Jan 2015 because she has always been very proactive. She has guided me through the ups and downs of these treatments and their side effects and she insisted that I get a 2nd opinion at our closest university center. When a scan shows increased uptake, she calls me and then we sit down and she always has a recommended tx and then discusses what would be next. I just wish that I could get more than six months from a treatment. Anyway, I am glad that you already have started a new treatment and I will be hoping that doxil is doable and you get great results
Rara, what a great post! I know that many have difficulties with the tx, but I had six months on aromasin/affinitor with very few side effects. My lymph node mets regressed quite a bit at first and then had slight increased uptake at six months and my onc thought my cancer was starting to figure it out. I then had six difficult months on xeloda (I kept getting elevated liver enzymes and troubles with my hands/feet) but my lymph node mets were dormant on my last scan while my bone mets showed increased uptake so I am now on faslodex. Changing treatments is physically and emotionally difficult. I love that you are having a charm chant party....just great!
Rosevalley, I am sorry that abraxane is not working. Is there any safe way that you can get taxol again? Is it also in pill form? Anyway, you are always in my thoughts and prayers. You and longtermsurvivor are very inspirational...I just got back from a walk and a few young girls were having a wonderful time eating blackberries from an old bush at the end of my road...the simple pleasures are just the best.
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I recently posted this on the liver mets topic/thread and thought others with ascites might be interested:
Let's see, practical tips for living well with ascites.
Mine began in January 2015 and by August were bad enough to have a drain line inserted into my belly.
An average of 1 liter is removed each day, but I still get the swelling, fullness, discomfort, reflux, reduced appetite that trouble many with ascites.
Here are a few practical tips:
* No tight clothing or binders! Wear drawstring hip hugger pants or elastic waist pants and skirts. That liter weighs 2.2# and I can gain and lose an inch of waistline daily. Now is not the time for vanity and a small waistline! Wear tops that skim your belly, rather than bind it.
* Eat small meals and wait at least 4 hours after eating before bedtime. Avoid foods that lead to reflux - oranges, coffee, tea, spicy food.
* Drink plenty of fluids, especially around drain times. Replenish with electrolytes like coconut water & broth.
* Good mouth care - the dry mouth after many months of draining is terrible - so I drink water frequently, rinse with glycerine and marshmallow tea. Some people swear by biotene, but it didn't work for me. Sometimes holding a bit of coconut oil in my mouth helps. I avoid salty food, most food, after 4 PM.
* Sleep on back or side, not belly.
* I hold my belly with my hands and rub gently in the direction my colon runs - lower left up to liver area, across upper belly to upper right and then down right side.
* Exercises like gentle walking, yoga and stretching help. Anything that compresses the belly like the yoga poses of forward bends and child's pose don't help, nor does vigorous exercise that jostles the belly.
* Stand up slowly after draining and watch your blood pressure - mine drops very low, while heart rate races. Don't fall down.
Also, wanted to note that my indwelling drain to remove ascites at home began clogging a few weeks ago (I've had it for 11 months now). As Rosevalley and I often note that survival time with these devices is usually short, under a year.
A few weeks ago, my drain clogged and I had it flushed with tPA, a clot busting drug. It clogged again the next week and for the past week or so, a hospice nurse comes daily to flush with saline, then drain the ascites. There is always about a liter of bloody, but clear fluid, so my body is still producing it.
We don't know whether the life of these drains is short or my body is resisting draining because of accumulating tumor.
More shall be revealed!
I will leave you with some medical journal articles on ascites and indwelling catheters (drain lines).
Happy reading, but only if it's relevant to YOU!
Loving kindness, Stephanie
Fluid Complications: Malignant Ascites
2015
http://www.cancernetwork.com/cancer-management/fluid-complications/page/0/3
Safety and Efficacy of the PleurX Catheter for the Treatment of Malignant Ascites
2014
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4118699/
PleurX drain use in the management of malignant ascites: safety, complications, long-term patency and factors predictive of success
2012
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3479885/
Malignant ascites: A review of prognostic factors, pathophysiology and therapeutic measures
2012
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I need to ask if any of you ladies have to use stool softeners on a daily basics? This problem is getting worse lucky if I can use the restroom once a week. The dr. has told me for the last 2 years that I'm at a high risk for a bowel obstruction.
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