peritoneal carcinomatosis
Comments
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Oh, Cathy, I'm so sorry you had to hear Mark's opinion - someone who doesn't really even know you. Who does he think he is??!! I would have been pissed off too as that was NOT his place to share his unwanted opinion. That is a serious conversation that should be initiated by your ongoing MO when he deems necessary and Mark was completely out of line. I truly hope your MO or his supervisor educates him (even though he deserves a swift kick in the butt) on proper protocol in this situation. Truly unbelievable!
Hang in there, Cathy! You are a strong and incredible woman. My bet is on you! Sending you a big virtual hug tonight, my friend. 💕
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Who does he think he is indeed. What a jerk and totally overstepping his bounds if I am reading correctly and he is a physician’s assistant. How dare he. Quite frankly Cathy, not only do you deserve attaboys for how you handled this (and quite frankly everything you have done to date) but you deserve congratulations for not ripping out his spleen. I think I might have... Jerk. To be honest I think a formal complaint would be reasonable.
Stay strong Cathy. You are NOT done yet.
Hugs. Pat.
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Thanks, Sheri! I'm sitting here having a good cry. It just all caught up with me, I think. Tomorrow has to be a better day and I never have to see Mark ever again. Thanks so much, Sheri. Hearing from you really helped! LOVE, Cathy
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Thanks, Pat. I needed that reminder to stay feisty! I asked Mark if he had discussed his opinion with my Doc and he just shrugged and said that my Doctor was around but he hadn't seen him. Thank goodness my Doc came and talked to me or I would be really freaking out. UGH! What a day! Thanks for reaching out. I know that my time is not infinite but this was not the way anyone should be treated. I definitely think my Doc took our conversation as a complaint!! LOL LOVE and HUGS, Catthy
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Cathy I am outraged reading what Physicians Assistant Mark said to you and how he handled the conversation. I’m amazed at how well you handled it, don’t know what I would have done.
You ar right that tomorrow will be a better day as will many days ahead. I am new to this thread and hope to be able to provide support to you and others in the group as we move forward.
Barb
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Cathy,
Any set of statistics has outliers, data points that are on either side of the bell curve. You have clearly proved that you aren't a part of the data set on the wrong side of the bell curve, so there's no reason you shouldn't aim for the other side.
Stupid Mark simply doesn't understand stats. Or personal interaction, it seems. Or, medical hierarchy: Doctor trumps PA. IMHO, Mark is a doofus.
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Hey Barb and Blainejennifer! So glad you are with us Barb. You've been going through so much as of late. Thanks for taking the time to make me feel better. Hello Blainejennifer! You are completely right about the statistics. I have continually beaten the odds in my over 15 year cancer battle., why would I go by stats now. We are all just doing the best we can with what has been handed us. We don't need someone who doesn't even know us telling us what is or isn't possible. Makes me want to go into a few bars of "I Am Woman!" LOL My love to you all, Cathy
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Cathy, I hate it when a doctor tries to play God. They gave me two days to live two years ago and I’m still here. Maybe there is another trial or chemo. My original chemo was CMF. Have you tried that one? They hardly ever use it anymore. Kept my tumor marker normal for over two years. You are in my prayers.
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Thank you Dianarose! I haven't tried that particular chemo. I will run it by my Doc. I appreciate your kind words. I feel the same way...we will know when it's time and it's not today!! HUGS, Cathy
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Cathy- CMF was easy compared to all the others I've been on. I worked the whole time. Most don't lose their hair but I did.
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Our super strong Cathy, anyone who walked through yard sales and then a Farmers Market is NOT at Hospice stage!!!! You have heaps more life in you..... You are a survivor and your boundless energy and strength is an inspiration to all of us.
As everyone has said - Mark the Jerk was way out of line!! How incredibly destructive and distressing to give an unauthorised and unvaladated opinion. Totally unbelievable!!
Similar to Dianarose, I was told last July that I would not live past this July......WRONG!!! Still here..!!
A damm good cry is so cathartic and just what you needed together with HUGE virtual hugs from all your belly mets friends here.
Much love to you Cathy,
Jane xoxo
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Ah, Jane, Thank you so much! I needed this so much after the day I had today. I had a fellow cancer patient flip out on me today while in infusion. I was keeping an eye on her because she came in acting so distressed. I was kind of keeping tabs on her to see if I could help. The next thing I knew, she was screaming at me to quit staring at her and what she was going through was none of my business. Since she was sitting right across from me there weren't too many other places for me to look (the ceiling?). Anyway, I handled it by writing her a little message that I had just noticed her distress and that I wanted to tell her to hang in there. We cancer patients need each other for support and I wished her the very best and sent my love. I asked one of the nurses to give it to her AFTER I left. I don't know how it went over but I just couldn't leave it so negative. Not good for either one of us. I also had 3 different members of staff tell me that I need to write a letter of complaint about the P.A. He's leaving anyway. I just don't want to make things worse. I will have to think about it. If he was staying and could inflict himself on someone else, I would do it in a heartbeat. I saw the cardiologist yesterday and gave him the scuttlebutt. Bless his heart....he wanted the guys name and when I said he was leaving, the doctor said, "GOOD!" I also had a paracentesis today. Took off another 4 liters. I had to ask them to stop because for some reason I started getting a pulling and pain sensation, like the suction was pulling under my ribcage.. I gained about 9lbs this week. That should be instantly gone. I need to watch my diet better. I've been eating too much junk. Feels good to be hungry but it seems like all the healthy stuff my system doesn't break down so well. Anyone have some easy suggestions? Thank you, each and every one of you, for helping me get through the week from hell. I love all of you. I also have to say that even though there are always bad medical people, the really caring empathetic people easily outnumber the bad. Thank goodness! I will also tell her to her face but I couldn't have gotten through this week without my daughter. She's been with me through all of this. I couldn't have done it without her. Have a fabulous weekend my friends. WRAPPING YOU ALL IN A HUGE HUG, Cathy
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Oh Cathy, you have had a week! I'm sure you were quite shocked by the woman who yelled at you. I certainly would have been! It's interesting that some people want to share their entire cancer story and others are extremely private about everything. Obviously you were trying to think of what you could do to help her but it sounds like she falls in the “extremely private" category. You were sweet to write her a note. Hopefully she realizes others only want to help, not pry. Just not really what you needed yesterday.......
Boy, 4 liters is a lot! You must feel much better after that fluid was taken off your belly. I love that your daughter has been with you each step of the way - she sounds like a wonderful daughter. You have such a great attitude about all this. Your positivity is truly infectious - thank you for that!
Hope everyone enjoys the weekend!
💕 Sheri
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Cathy I hope this new week is a better one for you and for all of us on this thread.
My summer of medical drama continued last week with a complication in/after my port surgery It was Thursday and expected to be a quick procedure. When I woke up from the procedure to my surprise I was still in the operating room and the doctors were in the room talking to each other. They mentioned taking me to ICU. I was pretty disoriented and my rib/chest area hurt a lot. When they realized I was awake someone explained to me that right after the surgery my heart sped up uncontrollably so they had to use the paddles and CPR to get it back into rhythm. It’s called a ventricular tachycardia
The cardiologist came in to ICU and his initial speculation was that it was caused be the Zofran I was given by IV for nausea about 5 minutes before the event. It is apparently a known though not common SE from Zofran, something I’ve taken off and on for nausea since my initial chemo in 2014, After further review they also found that my potassium levels were too low and believe that was also a contributing factor. Sheri you had warned me about this potential issue with my tube feed and I had it on my list to review with my doctor this Tuesday, unfortunately too late for this.
I was released to home today after 3 days in the hospital trying to get my electrolytes to get and stay in balance. The potassium has been stable for the past 2 days and I’ve transitioned from the IV to a liquid that can go into my tube. I also need to supplement magnesium. They want me to get frequent labs for a while now to be sure all stays stable.
The first 2 days in the hospital I was depressed and anxious. I’d just started feeling like I recovering from the tube placement and now feel way backwards from even that starting point. My new chemo is supposed to start Thursday and I’m wondering what might go wrong with that, also if my body is strong enough to deal with a strong chemo. Today is a bit better and hopefully my new chemo teach appointment with the NP at the infusion center tomorrow will help my address my concerns. My husband and daughter were great support though all this, but I can see how it is wearing on them too.
I’m hoping to get a break now, hoping we all get a break.
Barb
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Goodness Cathy.....I am sending you massive positive vibes for a wonderful week starting NOW!!
Interesting that Mark the Jerk is leaving.....hopefully he is NOT moving to Australia....yikes!!! AND...the ‘yelling lady’ - how sad but extremely distressing for you. As Sheri said, the extreme contrast in cancer patients undergoing treatment is a life experience in itself. I am so very sorry....you are amazingly understanding and kind to leave a note. Beautiful soul you have!
I do not like your weight loss program.....4 litres of fluid!!!- I am so very sorry for your continued suffering last week. ENOUGH!
Cathy, you mentioned foods suitable for us belly metsers. I have to stay rigidly to my ‘nutrition free’ diet otherwise I have ‘an episode’ resulting in emergency at Hospital. I eat a lot of eggs and egg based foods such as frittatas and quiches. Grilled fish and prawns (we have the best prawns where I live). NO fibre foods, skins, stalks or seeds. Sadly I am very restricted as to what vegetables I can eat but have had to adjust. No fibre of course results in constipation - our BIG enemy according to my Palliative Care Doctor.
Your daughter sounds as gorgeous and amazing as mine.....where would we be without them???
Barb - what a hideous time you have had to endure!!! Just awful!!! I feel so much for you and am so extremely sorry that you have had so much suffering. May this week bring you peace and sunshine.
Sending much love to all,
Jane xox
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Barb, I’m so sorry this happened to you - how scary! I definitely think low potassium could have been the culprit. It’s something they should have been watching closely. Once I started the liquid potassium in my tube daily, I didn’t have an issue with my levels anymore. As we talked about before, just ensure you get enough water through your tube to prevent dehydration. I struggled with dehydration the entire time I had a feeding tube. Hang in there - it takes a bit of time to figure the tubes and the related side effects out. So glad you are home now. What chemo is up next for you?
Hi Jane - does seem we have to walk a tightrope, doesn’t it? Mets to the belly really suck.
Nothing new with my cancer, although I feel like my belly is full of it. So anxious to get to Mayo and start my next treatment. My appointment isn’t until Thursday, 8/23, so I have a bit of time. I am going to get labs today and see my PA tomorrow. Not sure why except to check in, as I’m off chemo for the time being. In the meantime I’m getting ready to take my younger son to college on Saturday and my older son comes home from Colorado today, where he had a summer job. Time for him to look for a “real” job, as he graduated from college in May. Life certainly doesn’t slow down around us.
Cathy, I hope you were able to have a good weekend after you had the fluid drained.
Praying for each of you as we continue our struggle with this crappy disease! Sending much love ❤️
Sheri
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Hello! Had an okay weekend. Got out on Saturday but was too soon after paracentesis. I got tired and pretty light-headed. Having bowel issues also. I have finally developed hemorrhoids. SORRY! TMI! Anyone else having this issue and what do you do to calm it back down? I did get out for dinner yesterday. We have a local restaurant who will let me get one piece of fish and a cup of chowder. It's amazingly good and makes me feel like I'm cheating! LOL Jane, thank you for the food ideas. I hadn't thought of quiches and frittatas even though I do eat a lot of eggs. Love shrimp also. I'm lucky living in the Pacific NW as I can get fresh crab quite a bit of the year. I eat crab and some sourdough toast with it. Amazing! I miss crab salad though! My Doc also says that constipation is our enemy. I take a probiotic every day. Hoping it helps! Barb, I'm just so sorry for your hospital experience. That's just scary as hell waking up that way. Glad you are home and that you are ok. We love our families, don't we? Couldn't do this without them! Sheri, sorry you have the wait before seeing someone at Mayo Clinic. I so hope they have new ideas to help you. I have Interferon shots this week and a CT test on Thursday. I see my regular Oncologist on Friday. So glad I don't have to wait for test results. This week just has to be a better week for all of us! We deserve it! LOVE and HUGS, Cathy
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Retrocath take a facecloth lay it flat, sprinkle a generous amount of salt in the center, put an ice cube on top of the salt, bring in all 4 corners of the cloth, hold on to ice cube area & twist tight. Dampen the ice cube area with a small amount of water. Apply to affected area for as long as u can tolerate. The salt dries up & shrinks the hemorrhoid & the ice takes away the pain/itching. Apply 2-3 times a day. Works like a charm. Best advice ever given to me by my Dr. Good luck
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70Charger...Awesome!! Thank you!! Hugs, Cathy
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Hugs back at you retrocath. U should have relief in just a day. Hugs Fran
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Well, I think I have good news. I just have a total lack of trust that anyone knows what they are talking about, right now. It's been such an emotional roller coaster lately. I had a CT scan yesterday. The P.A. ordered it figuring it would show spread to the liver. My liver looks fine and it's not enlarged either. The lower lobes of my lungs look better also and you could not see the nodules this time in my peritoneum. I am not jumping up and down because so often nothing shows up on scans even though it's obvious the cancer is acting up. I am going by how I feel and I do feel better. So it's possible this clinical trial is kicking butt. Not a for sure explanation of what is causing the continuing development of ascites. So that's what is happening at my house. Had a long discussion with Doc about how best to have "end of life" discussions and the protocol I hope will be used in the future. You guys are awfully quiet there. Hope everyone is feeling okay right now. LOVE and HUGS, Cathy
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It’s great to hear your news Cathy, sounds to me like trial is working.
I had my first Doxil treatment yesterday. I’ve been tired but otherwise ok so far. The days before chemo I’d started to feel quite a bit better and get my energy back. I think the low potassium might have been what was making my initial recovery after the tube placement go slow.
Wishing a good weekend to all,
Barb
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Cathy- if you don’t mind could you pm me about the trial you are on. I’ve been on Xeloda fo 8 months but we don’t think it’s working anymore. Tumor marker has gone up each time it’s been checked over the past nine weeks. I’m both bummed out and scared
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Dianarose, I tried and tried to get this info for you but I couldn't get the website to show the study. I called the clinical trials person in Everett and got this very specific URL. Here we go: http://clinicaltrials.gov./ct2/show/NCT03066947?term=Briacell&rank=2 I hope you can find a location close enough for you. Wrapping you in a big hug, Cathy
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Good morning. I've decided to quit feeling pessimistic and really feel hopeful about my treatments. I've just been so shook up emotionally with oncology that I don't know what to believe. I feel pretty darn good. I have my moments but when you have cancer in your abdominal area, you are bound to have a system that doesn't work well. Trying to get back to appreciating what is good and letting the bad go. I want to enjoy the rest of the summer and not worry so much. I hope as many of you as possible will take a look at the clinical trial. I definitely think this is the future of treatment. Love you all, Cathy
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Cathy your trial sounds very interesting, i hadn’t realized it is a targeted immunotherapy. I haven’t seen many like this for breast cancer. It’s exciting to see the research is occurring. I saw a location close to me in California so it can be a realistic future option.
I’m going to try to follow your lead and feel optimistic about my current treatment. Think about all that I can do and the support I have rather than feel frustrated by the limitations with this 24/7 feeding tube. I’m hope hopeful it can soon be reduced to less hours on and 4-6 hours free of the pump, which will feel glorious.
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Hi all - just wanted to check in with y’all today.
Been very busy. We moved younger son into college yesterday and I fly out tomorrow to see my parents. Then my Mom, Dad and I will drive to Mayo on Thursday morning for my afternoon appointment that day - just under a 4 hour drive. Drive is longer than I remembered. I’m ready to get going on some treatment. I feel like my cancer is probably running amuck right now.
Cathy, sounds like your clinical trial is working! Those scan results sound good. You are so positive and your attitude and experience is helpful to all of us here. Keep up your hard work!
Waving hello to everyone- always thinking of each of you. Liwi - hang in there with the tubes. I know it’s not easy but I’m hoping you will be able to reduce your daily time on them. One step at a time.
Gotta get back to getting things together. Right now I’m planning to be gone 13 days, so trying to get my house in order a bit before I leave.
💗 Sheri
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Sheri, so glad to hear from you. You have been busy!! I'm so glad your parents are going with you to the Mayo Clinic. We can use all the support we can get. I so hope you get the help you need in a timely fashion. Often the waiting is the hardest part. I need to know I'm doing something about it. By the way, my Doc took me off the Letrozole. I've been getting a lot of leg pain, cramping in my shins, calves, feet and ankles. Hope it wears off quickly. Sending you much love and hugs. Hope this is a very successful trip and that you get the answers you need. Keep us posted. Cathy
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Good evening Lovely Ladies
Just wanted to say Hi to everyone and send loads of positive love and hugs. Amazing how our bodies are so remarkably different in how they respond to treatment - similar treatments for the same cancer.... No wonder it is such a monstrous challenge for our brilliant scientists to conquer this wretched disease!!
Sheri - what is your ‘miracle energy elixir’?? You are amazing to have such energy when you suspect that your cancer has ‘run amuck’. I wish you a supportive and successful trip with BIG positive outcomes.
Liwi - feeling for you so much with your frustration and limitations with the feeding tube. Wishing you speedy ‘freedom’.
Cathy - did your Doc take you off Letrozole because of the leg pain and cramping?? Yet another challenge... Where too from here?? For what it is worth I find Acupuncture eases a lot of my ‘body issues’.
We have to keep smiling as these darn bellly mets are such a challenge, testing us all the time
I have been enjoying our winter sunshine and being so thankful that we are all ‘still on the right side of the grass’!!!!
BIG hugs and much love
Jane xox
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Hey Jane and all! I'm off the Letrozole because of muscle spasms in my legs. "Charlie horses" have been the bain of aromatase inhibitors for me. I would get them in my ankles and it would twist my feet. The ones in my feet would cramp my toes and the ones in my calves and shins ached and hurt until I got heat on it. It would sometimes take a while before it would calm down. I will be glad when the Letrozole is completely out of my system. My hubby is off this week for his birthday. It has kept me running! LOL Also, my washing machine died last week and I just got the new one delivered. 2 weeks worth of laundry to catch up on. Always something. Glad you are enjoying the sunshine. So glad to hear from you. Sheri, hope your visit is successful. I've been thinking about you all week. Good luck! Take care everyone, Cathy
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