peritoneal carcinomatosis
Comments
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Cathy, I really hope you are feeling better and your stomach pains and vomitting have ended. I haven't had a PET scan in a while, just CT scans and bone scans. Do you think a change for you to CT scans might be better? They seem to show everything on me and I have the sneaky ILC also.
Rosevalley, how are you? How did the new chemo go today? Is it Navelbine (another name for the V chemo)? I'm thinking of you and hoping your infusion went well and you are feeling ok.
Wishing comfortable days for everyone.
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Loving kindness and healing light for all always!
Falling over exhausted today, but I made it and pain is bearable.
I am grateful!!
warmest of wishes, Stephanie
A bit of beauty to warm your sweet souls -
Lyrics:
Hallelujah
Written by: Karisha Longaker & Sarah Nutting
Lyrics
Every time I feel this way
This, old familiar sinking
I will lay my troubles
Down by the water
Where the river
Will never run dry
Hallelujah Hallelujah (I'm gonna let myself be lifted, I'm gonna let myself be lifted)
Hallelujah (I'm gonna let myself be lifted)
Bye and bye
I will lay my troubles down by the water
Where the river will never run dry
It's been said and I do believe
As you ask so shall you receive
So take from me these troubles
Bring me sweet release
Where the river will never run dry
Hallelujah Hallelujah (I'm gonna let myself be lifted, I'm gonna let myself be lifted)
Hallelujah (I'm gonna let myself be lifted)
Bye and bye
I will lay my troubles down by the water
Where the river will never run dry
There is a river
In this heart of hearts
With a knowingness
Of my highest good
I am willing
I will do my part
Where the river
Will never run dry
Hallelujah Hallelujah (I'm gonna let myself be lifted, I'm gonna let myself be lifted)
Hallelujah (I'm gonna let myself be lifted)
Bye and bye
I will lay my troubles down by the water
Where the river will never run dry
Where the river
Will never run dry
This river
Will never run dry0 -
Cathy, you are correct there that lobular has been largely ignored for a very long time. The major symposium they just had sounds promising like maybe they will get something going. I hope you are having a better day today with no nausea.
Oh Rosevalley, wishing you grand success with the new V. (I am lobular too) May you get massive relief and and a much deserved respite. Yes, I understand that we have to let go when someone is ready. I do find comfort in the fact that you Stephanie seem to have found peace in your eventual passing and I know you will indeed fly free!
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I thought I left a message--I must have messed up! I think my Dr. was nervous to start me on a new treatment without proof of progression but after looking at my old test results and examining me, he decided to carry on and start me on a new chemo-- Halaven starting next week. He hopes to put me back on Ibrance with Faslodex for maintenance after the chemo treatments get my symptoms under control. He said it was a good thing he had already been my Dr. through the 1st go round with this or he would have had to wait until it progressed to get proof. My abdomen was very sore today so at least he had physical proof from my exam to justify the change. I just feel better knowing I have a chance to slow the cancer down again. Anyone else been Halaven and how did you do on it? Love and hugs, Thinking about all of you! Cathy
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Hi Cathy,
In July, after progression on Taxol, my onc told me we had to decide on a different chemo. The choice she gave me was either Halaven or Doxil. After discussion, we chose Doxil because I was experiencing burning under my feet from Taxol and Halaven can also have that SE, so she wanted to give me a break from that. But Halaven is certainly a good choice. As it turned out, Doxil didn't work for me at all, and I moved on to the clinical trial. Wishing you a good success on Halaven with no or very minimal se!! Good Luck
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Cathy- good luck on Halaven may it work quickly and bring you relief. Hummingbird Doxil didn't work at all for me either. Interesting that we are both lobular and my doc thought since doxil works well with abdominal mets in ovarian patients it might work on ILC breast cancer patients with abdominal mets. It had nearly no effect. I hope someone keeps some stats on these kinds of things so other doctors have info. I am discouraged my tumor markers came back 1116 from yesterday's draw.. highest they have been in 9 months. I vomited up my dinner and haven't done that in weeks. Lets hope Vinorelbine does something.
Hugs to all my belly buddies on this hard path! Blessings all around.
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Rosevalley, I'm hoping so much that Vinorelbine works for you and you get relief from that horrible vomitting. Also hoping your TM drop at your next check. I think mine will be checked again on Tuesday at a 7 hour clinical trial visit at my cancer. Not including the 4 hour commuting time - long, long day! But my TM is also very high so I would love to see a drop - and then I don't mind the time spent there!
Wishing for better news and comfort for all here. Hope you are able to enjoy the day!
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Vinorelbine worked for me last time. The Doc had to do 2 on and one off because I couldn't tolerate 3 on. After 2 months of treatments I felt a very definite change and continued to get better. I know that's a long time to wait.
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retocath- What kind of side effects did you have on the 2 on one off schedule? My doc said she would try doing it continuously. The NP said they normally do 2 on - one off. The problem is when they did 3 on - one off the cancer bounced right over Gemzar and my markers took off. We will see how I do on this chemo maybe she is lowering the dose? That I am not sure. Oy.. I am so profoundly tired. Tomorrow I am trying the ritalin. I tried going grocery shopping and I barely made it there and back. I promised my DD1 cheesy potatoes and chicken strips. So by golly I went and bought it. I made the cheesy potatoes and bought the strips done. Nearly had to drape myself over the cart. The good thing ix she loved every bite and ate it all. Big old salad with tomatoes too.
My DH's good buddy at work brought over the most gorgeous raspberry rhubarb pie all home made. My DH loves pie and was so thrilled. My DD1 ate some too still warm. I don't dare eat it, but it looked awesome. I had ice cream and that went down.
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Hi Rosevalley. I had the usual side effects--low WBC and low RBC to the point of being anemic all the time. My hair thinned out pretty well too. I remember everything seemed like work. I would take a shower ( sitting on a stool) and then feel so weak I would crawl into bed still wrapped in the towel. Brush my teeth--crawl into bed. Because my system had slowed down so much from the cancer cells, I subsisted on mashed potatoes with an egg on top, cottage cheese, Atkins shakes, soup (cream of mushroom and chowder really thinned out) in other words, mostly on starches. I know there must be other things but honestly this is how I get through treatments--as soon as they are over, I forget! Denial much? LOL Proud of you for getting out but please be careful! LOVE and HUGS, Cathy p.s. Atkins shakes over ice with coffee added are excellent and the bit of caffeine is good for the intestinal system.
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Hello! Hope you are doing okay. Stephanie you are very much on my mind and in my heart! Wrapping you all in a big hug. Cathy
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I am watching "Eight Days a Week, The Touring Years" a Ron Howard movie on HULU today. It's also in a few movie theaters. When it comes to The Beatles my little heart is still 10 yrs. old and still goes pitter patter. Find something that makes you happy!! Love and hugs, Cathy
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Hi Cathy,
I think many of us here are all around the 60 year old mark, and can relate to what you just said!! Enjoy the movie!
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DEar dear all of you,
I'm so sorry for all your trials and tribulations. They say misery loves company, but truly, when I'm dealing with my stuff, I'm constantly wishing and hoping that things are going better for everyone else in our intrepid band. It makes me sad to hear of setbacks, but I'm always heartened when things go well.My original diagnosis reported both ductal and lobular characteristics in the breast tissue and the later omental biopsy stressed the lobular. I think the sneaky lobular cells went traveling and landed in the peritoneum, the nasties. Anyway, I'd like to take a drug poll for anyone who would be willing to participate. I'm trying to wrap my head around what's worked and what hasn't - is it random, or is there some consistency at least in our small sample?
Here's my list:
first line (July, 2012-July, 2014): letrozole and faslodex worked beautifully for 2 years. sigh. (marker went from 244 to 84 to 109)
Aug,2014-Oct, 2014: tamoxifen did nothing (marker went from109 to 288)
Oct, 2014-Apr, 2015 capecitabine (pills) worked pretty well but se's eventually got me- severe hand-foot syndrome
(also, was hard for me to do doses exactly 12 hours apart with meals - was a struggle
to eat enuff at 7AM and didn't really want dinner later than 7PM.)
marker went from 288 to 143
Apr, 2015-Mar 2016 Ibrance - my take is that Ibrance really did nothing. marker started by climbing, leveling off and
hovering around 350. When my onc finally agreed to give up on Ibrance,
marker was at 348Apr, 2016-July, 7,2016 taxol - infusion reaction, desensitization oy vey. no ascites abatement BUT
July 7-Aug 4,2016 NOTHING and didn't the cancer enjoy that! Marker up to 465! More ascites!
marker went down and hovered between 250 and 272.Aug 17 - now Adriamycin (this is low-dose Doxil, given once a week for 3 weeks then one week off)
The Adriamycin, my dears, seems to be working for me. Last check of the marker was 303, so I'm hopeful. I find it interesting that Doxil as Doxil did not work for Hummingbird. Hummingbird, were you doing just one dose every 4 weeks? My oncs said it takes several cycles for that regimen to show results, which means waiting for something like 3 months before you can tell whether or not it's working. That's why we went the Adriamycin route.
BTW, when I say marker, I mean CA27.29 - is that the marker that all of you mean too?
Stephanie, I love the Ma Muse video - gives me hope that I can upload pix and perhaps a video from the party.
I wish you all sweet dreams and comfortable nights and days......
-Erica
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Navelbine administered at 2 wks on and one week off worked for me. Took a couple of months of treatments before I started feeling a difference. Was on it from February through May of 2014. I then was switched to Ibrance and Letrozole. Got 15 mos. of feeling pretty good. Love and Hugs, Cathy
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Hi all,
So after a very long day at my cancer center I am exhausted but had to post my good tumor marker results! My CA 15-3 dropped in the 3 weeks of me being on this clinical trial! It is still high at 953 but the end of Aug. it was up at 1,251 and I'm so happy that it's going in the right direction!!! I will be getting scanned in a couple of weeks, so hopefully the scan matches this great result!
Erica, my onc does the CA 15-3 and CEA tumor marker tests. The CEA is not reliable for me though. Yes, I was on Doxil for a short time (every 4 weeks) and it's true that maybe it needed more time to work, but my onc did not like that my marker was shooting up around 500 points in just a couple of weeks and then my scans showed rapid progression. We couldn't take the chance. Besides what you can see as far as my treatments, I am now in my third clinical trial. The first was with Xtandi (enzalutamide) which targeted androgen receptors, plus Faslodex. The second trial and the current third trial target different mutations I have. I have not had much success with anything but I am hopeful that maybe the drug I am taking now (plus I'm getting Faslodex shots tooagain) will work for a time.
Keeping my fingers crossed for all of us!!
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I am too Hummingbird! I'm praying this is the one to hold you for a very long while, at least until the next new thing springs up. I'll be thinking of you in a few weeks when the scans come up.....
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Hummingbird that sounds very encouraging and lets hope the scans show improvement. Has your belly decreased? Do you feel less full? The clinical trial sounds like a lot of work but if it works yay! Praying for success for you and all of us.
I am off for more chemo tomorrow.
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Well despite being tired and seeming to need to throw up once after the vinorelbine infusion it is working! I got my tumor markers back this morning and they dropped 161 points in a week to 955. Wow. nice. I hope I can tolerate this.
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Hello All! I started Halaven today. So far I feel pretty good. My daughter and son-in-law were with me. They kept me laughing and kept my spirits up. We have company coming for the weekend. Hope I will feel good enough to enjoy it. Hummingbird, hoping your treatment is working--you seem like such a wonderful person. I look forward to getting to know you better. You too Rosevalley. I hope the treatment works well for you...Are you 2 weeks on or every week or 3 weeks on? I was going to go 3 weeks on but couldn't tolerate it but did reasonably well 2 weeks on. The good part was that it really worked for me. I hope so much that it's a success for you too. Hope you are okay Stephanie. Sending you lots of love because we all "get by with a little help from our friends." LOVE YOU ALL Cathy
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Hummingbird, Rosevalley - HOORAY! I LOVE hearing about dropping markers and am keeping fingers crossed that these downward trends continue! I hope the good numbers also lead to feeling more comfortable. Here are some pictures from the charm ceremony for your amusement. I'd like to post a video, too, but website help says it must be youtube or vimeo, so I'll have to see how to make that happen. Meanwhile, here are these I 'm having trouble making these pictures show up in the order I want - I think I'll give up. Such a loving crowd, sending support and good wishes to all of us! And that's me in the straw hat, with Gail, the medievalist.
Much love to all my belly buddies!
-Erica
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Dear peritoneal sisters,
So grateful we're here together. There are so few of us who post, it's easy for me to keep track of us.
And then to get the message with photographs from Rara Avis is a huge treat - invested as I was in her charm ceremony.
Rituals of all types intrigue me.
Last night, the local women's pagan group, Diana's Grove, held a ritual at the farm where i live. I heard the drums and cheers, but slept through it! Then three friends who are also quite active in the local death care community came to visit and we had an unexpected and penetrating exploration of Rudolf Steiner's indications for dying and working with the dead.
I've studied his work for many years after falling into with my mistletoe and anthroposophic medicine approaches to recalcitrant breast cancer in 1996! In 2005, our local community produced a well-attended conference on dying and death.
Last night's conversation stimulated my old interests and I fished out old conference documents for updating and review. What a wonderful opportunity to re-enliven an old interest that really is new again!
Anyway, I'm waxing poetic about the opportunities that come when least expected. And how grateful I am to still receive grace and grace again.
I feel similarly about our little peritoneal group. Each of you have become a heart friend to me and I speak to you inwardly.
Rosevalley and Cathy starting new treatments. Hummingbird finding your way with the clinical trial. Rara Avis reflecting on your ceremony. Artist actively engaging us through listening and feedback. And others who read, listening in with interest.
We all support one another. I am so grateful. And so tired! Coming to the end of my writing time this morning, but wanted to send best healing wishes for all!
well wishing, Stephanie
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Stephanie, Rosevalley, Cathy, Erica, Artist and everyone else here on this belly thread - I agree that the support here from our little group is tremendous. Erica, thank you for the pics and for including all of us in the ceremony. I have to tell you all where I've been and what I've been doing the past 5 days! I didn't want to say anything before, because I really wasn't sure I would be able to do this:
I flew to Las Vegas, attended a destination wedding which was so much fun, partied at the nightclub "Intrigue" at the Wynn hotel where we stayed, lounged by the pool, spent wonderful time with a very close first cousin who lives in Vegas and is like a sister to me, gambled a little (of course), and ate a lot! I truly had the time of my life!! Yes, my belly felt really bloated at times and still is swollen - but didn't keep me from doing everything I wanted to do. No bad fatigue - I am enjoying being off chemo and on this trial which I am praying is working! But I would think these are all good signs! I know you all understand how excited I was and how much it meant to be able to be somewhat normal for those days. It was fabulous!
I did check in on all of you a few times while I was there, just didn't have the time to post. Got home early this morning. Hoping you are all comfortable and able to enjoy the day!
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Hummingbird- it sounds like you had a blast and enjoyed everything! That's the sweetest revenge on cancer taking back your life and living it. I am happy for you and of course hope this new clinical trial works for you.
Erica - it looks like a lovely gathering of spiritual friends. By the happiness on your face they sustain you.
Stehanie- you never stop amazing me we have so many things in common. I wanted to live in a Waldorf village after college and applied and couldn't do it because of my student loans. The stipend they offer wasn't enough to live off of and pay back my loans. I went and interviewed anyway. I had watched and wondered and longed after a Waldorf education but couldn't afford it. I even visited Dornach, Switzerland and the Goetheanum in 1978... very cool buildings and village. It was my hope that my daughter went to a Waldorf school but we moved to Oregon but there were none local. When when we found out our DD1 was disabled and unable to live alone, I thought she could live in a Waldorf Village, but after looking all over the US there are none that take deaf disabled clients. It just seems that it is not to be in this life time. I am glad you seem to have hooked up with a community and it sustains you.
I hope you are pain free and breathing is unlabored. Nap well my friend.
Blessings to all.
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Hi Rosevalley,
I could have guessed that we two similarly gentle souls might have met through Waldorf and/or Camphill, if not here.
Rosevalley, I read on your personal thread that you've switched from draining in evenings to mornings.
I've long been draing mornings and have a whole ritual that works for me. Please take what you like and leave the rest.
Wake early to eat a bite & take Zofran for nausea. Drain 1 liter of fluid. Lie down and take a long nap.
Wake again and ravenously eat more food - always with something probiotic like unsweetened probiotic yogurt, kvass, probiotic drink or raw sauerkraut - even sauerkraut juice.
Start my day.
Now that I have to wait for a hospice nurse to flush my drain, the same basic routine is pushed back a bit...so I do most of my online reading and writing before the flush and drain, then a bigger nap after the nurse visit.
Blood pressure always tanks from draining and standing up wouldn't be safe. So, I sleep with the cell phone next to me and a big mug of water at hand.
I find my day is better/easier with a morning drain, than an evening drain.
1 liter every 24 hours.
Rosevalley, thank you so much for mentioning daily draining. Or maybe I intentionally misread what you wrote. You really saved me from 2 liters every day. That's nearly 5# of fluid from my <100# depleted frame. It was just way too intense for many reasons.
Hope this is helpful to you and those who have or will have implanted drains.
More awareness and lovingkindness!, Stephanie
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Stephanie I do feel better draining in the morning. I don't know how I ended up pushed back to evenings.. anyway it wasn't working. I just tried to place another order for bottles as I am down to 9. I guess insurance is only giving me one month at a time as they doubt I will live past that. So new authorization each month. Heck I was only going to order 2 boxes at a time. With Gemzar fizzling in 5 weeks I am a little worried. The supplies are so spendy but as long as I am alive I need to get the fluid off. I feel a little odd after draining too never checked the BP but I am always thirsty. It's probably low. Not as low as yours and I am not as thin.
Got a little more Christmas shopping done. Now I m laying down putzing on BCO and enjoying the beautiful Fall gold oak leaves out my double southern exposure window. It's a bumper crop of acorns this year and the baby squirrels are just gorging...bury a few here... eat a few.. and they are everywhere - big fat huge acorns. We have quite a few baby squirrels... so skinny and cute. They really need to fatten up and put on some weight.
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Hello Everyone! I survived my 1st treatment of Halaven followed by a weekend of company. My sister-in-law and her husband were here for a visit. Even though they stayed at a hotel, I'm exhausted. We had a lovely time though. Lots of good food, a walk around a quaint little town, a boat ride in Puget Sound and we hooked up stereo speakers and sang our way through "Eight Days A Week," the latest Beatles' movie. It's good to be alive even with all of our physical side effects. Hope you are all having a good day, free from pain. Cathy
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Cathy- Yay!! Sounds like you made it through and enjoyed the visit. The Beatles are happy music and it would be pretty hard to be sad playi ng and singing along. How wonderful you had a great visit. May Halaven give you some time - good times! Hugs to all.
rosevalley
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Hummingbird, I also was in Las Vegas this week. A group of ladies from here on Bco meet every year in Vegas. Funnily enough, the Sommelier at Hugo's Cellar, after asking what we were in town for.....said You are all survivors!!!!! Well duH,
We may have walked right by each other in the Wynn...one of my favorite places.
I check on my you sweet ladies that post here daily...even though my mets are all in lungs I learn so much from each of you.
Brenda E
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Brenda, WOW - that's too much that you and other ladies from bco were in Vegas the same time I was and you were also in the Wynn! I'm sure you had a good time also. I love Vegas!! Thanks for checking on us here daily. I hope you are feeling well.
Cathy, so glad to hear you did ok with your first Halaven treatment. May you have a long success with it! Great that you were able to have such a wonderful time all weekend. Of course you are tired, but look at all the fun you had!!
Wishing everyone good days.
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