peritoneal carcinomatosis
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Hello all! Spent my time yesterday for over 2 hours while getting my interferon shots listening to a sweet couple tell me about ALL their trips to all 7 continents . They would ask me where I've been and then immediately take over the conversation again. Made me a little uptight but I had a good laugh after I got out of there. You never know who's going to be in the chair next to you. lol Well in the last month my tumor markers have gone up 150 points. I see the Doc this week so will talk to him about it. I'm not ready to give up as I feel this kind of treatment is the future and I so want it to work out. I actually feel better right now so I have to assume that the Afinitor did do its job. I just don't know if I could ever handle going back on it. The good news about my heart is that the medication seems to be helping. My pulse has dropped from always being in the high 90's to being closer to 75. After next week, I get 2 weeks off. Yeah!! Just received a "care" box from my sister with 2 books about the Beatles and a wonderful t-shirt and bag. I have the best support system! Hope you are all doing well and having a great summer. Hugs, Cathy
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hello all I’m. Sorry I haven’t written been miserable. My mother has been getting worse and worse ever since palliative care has taken over.
The fluids she was receiving we’re bringing her back but we notice her belly was also getting bigger and bigger. At one point it stopped but then it came back bigger then ever.
My mothers oncologist stopped xeoulda because my mothers feet were swelling, also mouth sores and from what the oncologist said it’s caused by the xeoulda.
My moms health has been getting worse, she gets confused often now. Has lost more weight, has pretty much given up.
The palliative care doctor came in and saw my mom and said that my mom has one month or the most three months. I honestly don’t know what to do. I feel like they have given up on my mom. They don’t want to do anything for her. I asked about clinical trials and the palietive doctor told me that they wouldn’t be benifit your mother because I for her current condition. somebody people can handle it and some people can’t some people.
They also asked me about the do not resesitate...... this is crazy. I’m scared.
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Johnny, I don't know what to say. I'm just so heartbroken for both of you. Maybe someone else on this thread can give you ideas on what to do medically. It could very well be that they just caught your Mom's cancer too late. Treasure every moment you can get with her. I hope you can find solace in that your Mom knows everything you have done to help her. Wrapping you in a big hug, Cathy
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Johnny, I’m so sorry.
Did your MO give you any further suggestions you could try, such as Ibrance? I thought the palliative doctor was just for pain management but your MO would be the one to suggest treatments. Unfortunately, there are no easy answers, as they don’t know why some treatments work for some and not others. It’s is so hard for everyone fighting cancer. You have been and continue to be such a wonderful, loving support to your Mom. I’m glad you have each other.
Cathy, you always seem to have different experiences in the chemo room! Honestly, I really don’t have much excitement in the chemo room. Most people are usually sleeping or have brought a friend, so there is not much interaction. I’m glad you are going to have 2 weeks off soon - it really makes a huge difference for your body and spirit. Also, what a nice care package from your sister. Having great support makes us feel much better mentally and in a better place to fight this crappy cancer. Let us know what your MO days this week.
I have MO appointment and chemo on Thursday, so we will see where my TMs are. Tomorrow I’m spending the day with my nephew- going to lunch and then to see Incredibles 2. He is 12 and we have always had a special relationship - he is as sweet as can be and is very loving. I’m trying to create some memories with him.
Enjoy your Sunday all. Hope to hear from more of you soon.
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I’m so sorry Johnny. It’s so difficult when drugs don’t appear to be working. I wish I knew what to say to make it easier. You are such a support for your mom but I know this is incredibly difficult. My thoughts and prayers are with you.
As Southern said, while there has been so much progress, the disease remains a mystery in so many ways. We really don’t know why some respond and some don’t. I’m case in point as my oncologist expected it to be relatively easy to get this under control given the lengthy interval between my original diagnosis and the recurrence. But I’m on my fourth treatment in a year and a half and, to be honest, there are indications that Faslodex is also failing (hip pain getting much worse and more discomfort in my right chest). Cancer sucks.
Sending positive thoughts to everyone. Pat.
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no the doctor has not made any other suggestions. They just stopped xeoulda and he said that if he was to start it agiain it would be twice daily of 500mgs.
My brother asked for clinical trials and her oncologist said she would be a good candidate. I feel like slapping Him real hard.
What about blood transfusions? Do they make a difference?
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Johnny, I was in really bad shape about a year and a half ago. I had A/C chemo for several weeks to get the cancer back under control plus nine blood transfusions. Yes it made a difference. Ask about A/C and some transfusions. They didn't think I'd make the weekend as my own healthy cells wereself destructing. It was quite terrifying. Has happened to me twice now. They need to get things under control before something like Xeloda would stand a chance. Just my opinion from experience. Will say a prayer for you both
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Dianarose, that sounds like a good idea....a treatment that would kick it's butt sooner. Hope you can get the help your Mom needs, Johnny. Hugs, Cathy
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Good evening All (It is evening 'down under’...)
My apologies for being MIA. The 'roller coaster' ride headed south for a while but happily I am feeling a lot better and forever grateful for your posts and support.
I have read every post since my last. My goodness Cathy, I admire you greatly for your tenacity in 'hanging in there' with the trial - sounds quite demanding. You deserve to be rewarded with huge benefits.
Johnny, words fail me. I am so deeply sorry. I also think that Dianarose's suggestion is a good idea. I was also in an extremely bad state 14 months ago and my MO gave me similar treatment to Dianarose. I would be definitely 'pushing' for A/C and transfusions. Blood transfusions keep me 'on my feet' these days, without them I am useless..... I have been on Capecitabine (Xeloda) since early February and it is proving to be a good treatment for me with minimal side effects. If your Mum can gain some strength there is a good chance she shall be able to tolerate Xeloda long enough for it to work its magic. For me the positive results started to show after 4 cycles. I am sending you BIG hugs from Australia.
Pat, I hope that you are wrong re: Faslodex. Southern, all wobbly bits crossed that your TMs have dropped. We all live with loads of positive thoughts, hope and love.
HUGE hugs to everyone
Jane
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Hey Jane. So glad to hear from you!! How often have you had to get blood transfusions? I'm so glad they help you. Just the iron infusions I had in April made a huge difference in how I feel. So nice to have some energy. I sure wish the Xeloda had worked for me last fall. I was on it in 2012 with no issues but last year it just racked my intestinal system. You could hear it gurgling a block away. Awesome that it is working so well for you. I am finishing up my 3rd cycle on the clinical trial. I see the Doc tomorrow. I would like to continue but will have to see how he feels about it....with my tumor markers going up and all. It just seems like immunotherapy is the treatment of the future and I so want to be a part of it. It's also the 1st time since I went stage IV that I've been told I have a chance for some kind of remission if it works. I'm sure it would be temporary but that sounds like a whole different world to the one I'm currently living. LOL I don't know what I would do without this support group. So sad that we have lost so many. It just feels too quiet. My love to everyone along with big hugs, Cathy
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Thanks Jane.
I should know soon where things are at with the Faslodex. I've been agonizing over whether or not to reach out to my MO (I struggle with the whole issue of letting him know if I have symptoms only to have scans come back as stable or inconclusive - it makes me feel like I'm a crazy hypochondriac!) but the "gods" intervened. My GP sent me for a chest x-ray as I was still coughing up junk five weeks after contracting pneumonia. Now the radiologist wants me to have another CT. That spurred me to action and I contacted my MO yesterday to let him know what was up. I want him involved for any future scans to make sure we get a full picture. The last CT I had when the pneumonia was at its peak only captured the chest - its my belly and hip I want to keep an eye on!
It is quiet Cathy. I feel a bit bereft with so many not posting on a regular basis lately.
Happy Tuesday all. Hope the week is a good one for all. Pat
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Hi Pat. I'm with you. I feel very sad when there are no new posts and so excited when someone has. I just always hope it isn't bad news! HUGS, Cathy
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Had both naphrostomy tubes changed out today and the nurse used a different soap to scub my back. Not sure why but within a minute I was allergic to it. Have a nice hot burning rash now. Like the procedure isn’t bad enough. My skin is still burning. This sucks. I’m on the cranky side now.
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So sorry Dianarose! I get rashes from the tape they use and recent rashes from injection sites. Benadryl makes a great gel now. I don't know what I would do without it. That procedure sounds uncomfortable anyway. Hang in there! Hugs, Cathy
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Oh, that just bites. I’m so sorry DianaRose. This is just the gift that keeps on giving!
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Lovely Ladies
Just have to love this ‘Belly Mets’.....!! I totally cringed when I read your post Dianarose - super OUCH!!! Just hideous! And Cathy suffering from rashes, as if the treatments are not tortuous enough for us..... Luckily, I have rhinoceros skin so it takes a lot to cause a problem.
Pat, hopefully your CT shall provide some answers. Does everyone have regular contrast CT scans of your abdomen, pelvis and chest? My MO requests them 3 monthly.
Cathy, yes I do have regular blood transfusions. My bone marrow was damaged from the treatment for my primary BC in 2011/12 therefore the Xeloda knocks my haemoglobin right down. I have regular blood tests and if my haemoglobin reading is less than 9.5 I have a blood transfusion. I am a ‘new girl’ within 48 hours, energy levels rise and I can have a life rather than just ‘live’.
I totally agree Cathy that immunotherapy is definitely the future for cancer treatment. What are our chances...?? Cathy, how unbelievably fantastic that you have been told that remission is possible - YAHOO!!! That gives us all hope.
I have weekly Acupuncture and regular oncology massage which I find hugely beneficial. Anyone else have similar treatments or take vitamins etc?
BIG hugs and hope you have sunshine,
Jan
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Hi Jane,
You've touched on a sore point for me with the scans. I generally feel that my MO is the best and think the world of him but the one area that drives me nuts is with scans. He seems to prefer to do them on an ad hoc basis when I have symptoms. I find this approach very stressful as it puts the onus on me to tell him if something new is going on, makes me feel like I'm some crazy hypochondriac if, despite symptoms, the scans come back as stable and overall leaves me in a sea of uncertainty regarding the effectiveness of treatments. It's particularly challenging in my case as tumour markers don't seem to be an effective measure (also something he is hit and miss about ordering - I once took it upon myself to tick the box on the requisition - bad patient!) and my pleural and peritoneal mets are hard to assess.
I don't really understand his rationale as I actually feel I have had more scans than necessary as a result of this approach. To make matters worse, here in British Columbia, there is a disconnect between my GP, the local health authority and the provincial health services authority under which my MO operates. My current situation is an example of this. When I came back from my trip with pneumonia, my GP ordered a chest X-ray. The radiologist then ordered an urgent CT but, only ordered a CT of my chest. Now it turns out that the current CT ordered by the radiologist was again for my chest - his concern is the persistent pleural effusion. Well, that's just silly... I've had loculated fluid in my lungs for over a year. However, over the last five to six weeks I have had pain in my side/belly under my right ribs and my right hip/groin is killing me. None of this would be assessed by the CT that was ordered. I did engage my MO but, in typical fashion, I don't think he read the email carefully and indicated that we would hold off on scans until there were symptoms. I responded.. okay... we'll wait to see if the hip resolves... I think at that point he read back through the email trail, he has now ordered a CT of my hip. Arghh!!!!
Not sure if this is a symptom of the Canadian system and the hope is for cost savings but I am going to have to raise it with him. The trick is doing it without annoying him... So frustrating.
Sending hugs to everyone on this sunny day. Cheers. Pat
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Hi all - this thread has been busy! Jane - welcome back.
We all seem to have things going on right now. My biggest is this chemo has affected my vision and I now have cataracts that I will have to have surgery in each eye. As everyone says, this cancer keeps on giving. First we are trying to get my dry eye condition better and then surgery for left eye is scheduled for 8/27. The other eye will be 2 weeks after, I think. I’m just tired of doctor appointment after doctor appointment- it never lets up!
I seem to do scans about every 6-8 months, depending on how I’m doing. My TMs have always been a great indicator for me, so when they start trending up, we do a scan, then we see the progression. Has happened every time. I like not doing scans all the time. They don’t see my cancer very well anyway and it’s just one more appointment to have to go to. Plus, it doesn’t seem like I usually get good results. Sometimes I do, but not often.
Jane, a massage sounds so good - I haven’t had one in a long while. What is an oncology massage?
I’m enjoying hearing from everyone- Cathy, Johnny, Dianarose, Pat & Jane. Who else is out there?
Take care all - this cancer burden is not light. 💕
PS. It’s too sunny here in TX - 104 degrees today. I can’t take the heat!
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SS:
You are going to love having had the cataract surgery. I finished mine about three months ago, and it is amazing how much better my vision is. I hadn't realized how limiting having everything "greyed" out was. I even have decent night time vision now.
The constant eye drops are a pain. I got some far sighted makeup glasses off of Amazon to help with seeing close enough to place the drops safely. Getting used to being farsighted instead of nearsighted took some time, but I am almost used to putting glasses on to read instead of taking them off.
Here is a link to the glasses: https://www.amazon.com/EYEGUARD-Readers-Magnifying-Spectacles-Cosmetic/dp/B01NCHQI49?th=1
All the best,
Jennifer
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Thanks for the info, Jennifer. I was so used to having good vision that this crappy vision sucks.
The ophthalmologist did say I would be farsighted, which will be weird (and not sure I like) as I usually don’t wear glasses much except for driving. He also said that there were some cataract lenses that could make you see quite well both near and far but insurance wouldn’t pay for that. I guess new technology. Do you know anything about that? I’m sure that would be way too expensive, so probably not a consideration for me anyway.
Also, do you have to do eye drops forever? I don’t like doing them now either, so I was just wondering what my future holds.
This dry eye condition has just gotten worse over the last year and I really can’t deal with it anymore. I hope having the cataract surgery can at least improve my QOL for my vision.
Thanks again!
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SS:
I read a bunch of patient forums in deciding which lenses I would choose. Rarely were folk very happy with the lenses that are supposed to offer near and far correction in the same lens. I think the technology is still very new. More people were happy with one eye being the far eye and one eye being the near eye. My Aunt uses that system, and plays golf well.
I'm risk adverse, so I went with the plain vanilla lens, as if I'd aged naturally with good vision. It is wild to step out of the shower and see clearly. No grabbing for my glasses in the middle of the night, etc.
Each eye will need two or three weeks of drops with the frequency dropping each week. I think the first week it was 4 times a day, and each week had one less session per day per week. So, as you might expect, after doing both eyes, you'll feel like you've been putting drops in for most of your adult life.
I'm very used to wearing glasses, and missed them. So I had my specs made up with the reading correction in the bottom and clear on top, so I can keep them on my face all day. With no eyebrows and lashes (thanks chemo!), glasses make me feel less like a naked mole rat. And, I don't have to keep taking them on and off to read things.
Final bonus, with all the drops and mucking about with my eyes, my dry eye has substantially improved. I don't know why. I used to have to put drops in in the middle of the night, my eyes would feel so gritty. Now, I maybe put drops in once every other day. I think any little plugs in the lubrication pores in the eyelid get cleaned out with so much manipulation. It's been grand.
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Hello Diana Rose and everyone
Yesterday I had a procedure to insert my nephrostomy tubes through my ureters and into my bladder thus eliminating the bags that were the Bain of my existence.
However the pain is severe and I have the urge to urinate constantly. I am taking hydromorphone which is helping.
Has anyone had this procedure and did it work for you?
I will see if the pain eases up in a few days, otherwise back to my hated bags.
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Marina- I did try that once bot the cancer pushed on it and crushed the tubes as well. Beware of any flank pain as this might happen to you as well. I agree it’s very painful. I’ve had the bags for about two years now. I had to accept the fact I’m stuck with them. Sometimes I still have the urge to pee. Sometimes it’s like normal and other times nothing or two drops. Pain in the ass!!! If it doesn’t work out and you have to go back to the bags pm me for some helpful hints. Is it one side or both? So sorry this is happening to you! Hugs my f
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Hello All! I've posted twice in the last 12 hrs and had computer glitches both times. I'll try again. LOL Finished 3rd cycle yesterday and saw Onc. I'm continuing the trial and hoping my tumor markers start going down. Start 4th cycle in 2 weeks so I won't have to go in so much. I'm stuck between appreciating all the extra attention I'm getting on the trial and wanting to have a few days here and there where my life isn't all about cancer. Makes me a little depressed I think. Always trying to walk that fine line and keep my spirits up. WOW, Sheri, I had no idea that chemo could cause cataracts. I have thought that the Afinitor has changed my vision. I can't read road signs very well. They just aren't crisp enough. Recently joined Costco because I can get a complete pair of progressive bifocals with all the features for about $200.00 total price. I still have to make the appointment. I am hoping to get in a walk today in my wonderful neighborhood. Great to spend time with my hubby and little dog that isn't about cancer. HUGS, Cathy
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hi Diana Rose
It’s both. How long did you have them work for you before the cancer crushed them? I have some tips too ; lol
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Marina- I sent you a private message
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Good Evening Lovely Ladies!
Pat - you took me on a trip of sheer frustration....!! How utterly annoying for you. Is it time for a full body scan?
I must say that my medical care has been excellent with seamless communication between my GP, MO and Palliative Care Doctors. It does provide me, my DH and family with loads of confidence that I am getting the best care possible. I wish the same for us all.
Sheri - an oncology massage is a 'light touch massage'. Therapists are specially trained for cancer patients so that they massage in accord with the symptoms of your particular cancer. For example, I have extensive bone mets therefore they massage gently around the bones but stimulate the nerves. It is both incredibly relaxing whilst calmly energising! In Australia, Oncology Massage Therapists have to be qualified and registered.
Cathy - I am sure that your TMs shall start to decrease.....your trial will be beneficial and I again have all my wobbly bits crossed!!!
Thank you for the warning of the cataracts!! Goodness - another Chemo bonus!!! My eyes are watery all the time however I believe it is a SE from Xeloda.
Johnny - sending strength and caring wishes to you.
Hugs and sunshine from 'Down Under' (Winter here....Brrr)
Jane
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Jennifer, thanks for the additional cataract info - very helpful. Cataract surgery may be put on hold for the moment as I now need to go to Mayo for a second opinion and to get new tissue samples.
Well, my TMs went up again 31 points this past cycle. Ugh 32 points the previous cycle. Going to do a CT scan this next week as my cancer is probably on the move again and Halaven appears to be not working anymore. I did start another Halaven cycle yesterday hoping that at least it would slow down the cancer until we figure out another plan after CT results.
I'm calling Mayo today to see how far out the appointment will be. Probably end of August as I called a few weeks ago and it was mid-August. Not sure I'm ready for all this traveling and testing again. It's exhausting.
Welcome, Marina. So sorry about your nephrostomy tubes pain and circumstances. You have definitely come to the right place for answers. Dianarose will be a great resource and friend to you.
Jane, my eyes were very watery on my 15 months of Xeloda and never got better after switching to Ibrance and then to Halaven. Ensure you get them checked regularly. I've suffered too long and wish I would have addressed this situation sooner.
Cathy - hang in there. Enjoy your time off from all those appointments and treatments. It does seem that they rule our lives and definitely interfere in our QOL
Waving hello to Johnny and Pat too.
Hope everyone has a better day today. 💕
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It's always interesting to me to read about access to clinical trials. Unfortunately, we don't seem to have many here in Canada and, to be honest, I still have not figured out how to navigate the system to participate. I was in a clinical trial for radiation therapy when I was first diagnosed in 2001 but, at the time, my RO approached me to see if I would participate. The one I am really keeping an eye out for is Verzenio as it's not available yet in Canada. Ibrance did such a number on my RBCs that my MO is reluctant to go back on it. Of course, Verzenio has its own set of issues... mostly gastro. Yikes!
Waiting for word on my CT appointment. Like you Southern, I worry that this issue with my hip means the cancer is on the move again. Sure wish I could find something that would give me a year or so on one treatment.
Happy Friday everyone. Definitely looking forward to the weekend....
Pat
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Sheri - I am so very sorry that your TMs have increased. NOT what any of us want. When do you have your scan this week? Have you heard back from the Mayo clinic? Sending you heaps of soothing hugs.
Fortunately we do have quite a number of treatment options available.....AND....more to come. Bring them on!!!
Thank you Sheri for the warning on the watery eyes. I admit that I have not mentioned it to either my GP or MO. I shall now.
Pat - have you heard when your CT shall be? Sending good luck wishes.
Cathy - are you OK? I feel no news is to always good news on these threads..... Hoping with all my crappy energy that everything is fine.
I had my (very regular) blood test today to check my Haemoglobin level etc. If low, a blood transfusion gives me some 'spark'. My fatigue is one of the most difficult issues to deal with. UGH! How do others manage??? I am a lazy 'blob' these days....
Johnny - sending you positive thoughts and best wishes to you and your darling Mum.
Good evening and BIG hugs to all
Jane
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