peritoneal carcinomatosis
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So first chemo down and it was not bad . My doctor is trying to get the peritoneal carcinomatosis down or to go away
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Artist - how was your procedure today? Praying Xeloda will work well & get your bloating/ascites under control.
Kimchee, glad your chemo went well today. Which chemo are you on? There are many of us that have been on several types of chemos. We probably could offer some suggestions if you provide a bit more information.
Hugs to all tonight!0 -
I will be doing taxoter and Xeloda hoping this kicks everything down . Praying for the xeloda
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Well, I didn't make my flight!! I saw a Doctor on Saturday and he said he couldn't see my very sore throat because my palate is so high but assumed my problem is viral. He didn't give me anything. I've been doctoring myself up like crazy but could not beat the sore throat, laryngitis, and cold symptoms well enough to feel safe traveling. I made my husband go without me since this trip was about taking his sister's ashes to Hawaii. I'm living vicariously through him. Pictures of the room look amazing. Trying to not feel sorry for myself....this sucks!! Love you all, Cathy
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Oh no Cathy. That does seriously suck! I'm so sorry.
I know I keep hoping I'll get to stable so that I can do a bit of traveling as well. CT this afternoon and then should know by tomorrow or Friday if the Xeloda is working. Given that my pain and discomfort has not diminished, I am definitely concerned that this treatment has also failed. Now, to add to things, I've been bloated with a gut ache for the last few days. I suspect this is from the oral bisphosphonate (bone strengthener) that my MO put me on and not ascites. My discomfort came after I increased the dose to full strength. I know others have said this is a marathon, not a sprint. So true!
Pat
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Cathy hope you get better soon and can make up for everything , will be praying for you . Pat praying for you as well.
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southern, ironically the Dr. came in to do the procedure and was so warm and concerned. he asked me if I had had this before and what do I think helps make it easier. So I gave him a few suggestions. Well, It was the most painful one so far, just for that short minute or two but at one point I almost jumped off the table. I want to know why they can't train all these Dr's in the same way because I've had some where I feel literally nothing. Then others like him.......Anyway, it over for now but I HATE going there so much. hope this Xeloda kicks butt on the ascites.
retro!!!!!! Oh no, I'm so sorry you missed your trip. How disappointing for you and hubby both.......I hope you both get another chance for a trip soon.
Sadie, Someone on the liver mets thread just posted that the Xeloda makes her get worse pain but her scans were super good so don't despair!
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Thanks Artist. I saw that post as well.
Had my appointment with the Cancer Agency GP this morning. It's common practice here to see the GP after each round of chemo rather than the MO. GP is lovely. She took me in to the physician's space to view the CT scan - no radiologist report yet but she felt that she could see improvement in the pleural thickening (not sure about the peritoneum). Change was subtle but that would be great news as far as I'm concerned. So, perhaps Madame X is doing her job.
My MO will also be calling. I'll be interested to get his take on this. Here's hoping the GP is right!
The other good news for me is that she is switching me from the daily bisphosphonate pill to a monthly IV. Thank goodness. That pill is a complete pain... you have to take it on a very empty stomach, an hour before you eat. This means morning is best but trying to fit that into my day when I am working full time (and BTW have to take Madame X with food) was making me crazy and sleep deprived. Glad to see the end of that.
Wishing you all a good day. Weekend almost here again!
Pat
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Sadie, I hope the Xeloda is knocking out those mets too. I just started and would give just about anything to get rid of the bloating, discomfort, and especially the need for the dreaded procedure! It is kind of a pain to have to take the X with food as I am not always hungry in the morning but have to eat.
Hope the MO delivers the same conclusion!0 -
Rant for the day ....... Why the hell in this day and age are we not getting better treatment ?!!! With all the new stuff out there , there should be more and more people being cured !
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The question of the era.......
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Hi all - hope everyone is doing OK this weekend.
Cathy, so sorry you had to miss your trip. I know it meant a lot for you to go. This crappy cancer keeps us from so many things! I sure hope you are on the mend now.
Sadie, Kimchee and Artist, here's to Xeloda working well for you! I was on it for about 15 months. My TMs steadily declined throughout my time on it and it was manageable. I was on a dose of 3500 mg/day and would just say to stay ahead of the nausea and the HFS. My HFS wasn't too bad until about month 9. I certainly wish I would have had longer on it. Being back on IV chemo sucks.
I'm now in the middle of cycle 7 of Halaven - just finished my 13th infusion. Seemed to have a rougher time this infusion- that terrible metallic taste has come back. Praying my TMs stay in check. They only declined 22 points this last cycle, so makes me a bit nervous. I feel like I'm going through these treatments like water - just way too quickly.
Well, it's late and I'm tired. We all need our rest these days! Hugs to all and I pray you each have a peaceful night!
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Hello everyone: I have been reading up a lot on the peritoneal/omentum posts here. I became aware of my own peritoneal involvement about 1 and 1/2 years ago-- and recently started to develop complications with ascites in the past couple of months....where I had to have the paracentesis done. I had been on xeloda for about 6 months, and now my oncologist has switched me to navelbine. Can any of you give feedback on whether or nor--NAVELBINE worked for you with regards to minimizing the ascites?? Thank you for your feedback and I am so blessed to have found this group. I have not met many others that have our experience.
Thank you for any feedback! Heather
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Welcome, Heather! I'm so glad you found our small group within BCO as we definitely do have rare mets!
I have not yet tried Navelbine (one of the very few I haven't had yet but it is on my short list) nor have I had ascites issues, but I do remember Cathy (retrocath) having good success with Navelbine for her ascites. I know she will share her experience with you. Several others have had ascites too. That seems to be a big issue for many with belly mets.
I saw your post tonight and just wanted to say hi. Stay with us - we support each other very well through our many struggles.
Big hugs to you all tonight!
Sheri
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Hi Heather. Welcome to the group! Navelbine really worked for me. It took about 2 months and then I realized the pressure in my abdominal area was lessening and I felt more comfortable. At one point I had 7 liters of fluid removed and then a few months later, the ascites stopped. I have a few small pockets of ascites but nothing that needs to be removed. My treatments with Navelbine the 1st time is coming up on almost 3 years. Still here!!! When my last couple treatments didn't work so well, I was on Navelbine again. I am currently on Afinitor half dose and doing well. I have noticed, when I haven't been miserable with a cold virus, that my gastric system feels almost normal right now. That's just huge!! I even ate a salad the other day. Good luck, Heather. I hope it works for you as well as it did for me. It was kind of hard on me so take good care of yourself through the treatments. Get lots of rest! HUGS, Cathy
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Thanks to you all my beautiful friends! I will keep you posted on how I am progressing with the Navelbine. I am also doing research recently on the laparoscopic HIPEC where experienced doctors have worked with MBC patients. Let me know if anyone has any feedback or can chime in on this site, subject, etc. All of you are such a blessing to me. XXOO Heather
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Heather - Welcome to our thread and all the best with Navelbine! Glad you found us and keep us posted.
Saw MO today and TMs are on the rise, again. CT scan is ordered for next week to see if there is progression, in which case I will switch Halaven.
Hugs to all!
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Thanks southern, I can't seem to get a handle on the nausea yet. It really has me flat on my back. Going to try some CBD soon. I've only been on Xeloda for 5 days but so far its not helping the ascites. Another procedure tomorrow.
Hope the Halaven kicks in better soon.Retro, I don't know how many times you have had the procedure but even right after I still have lower abdominal pain. Last week was the most painful poke yet and I've had a giant stitch pain in my lower right side. I can't tell you what I would give to get rid of this ailment.
Welcome Heather, Hope the navelbine works wonders on the ascites. It's a misery...
Good luck on the CT Linda!
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Hi Artist,
My MO indicated it would take two to three cycles of Xeloda for a clinical response but hopefully you will see the ascites back off soon. It wasn’t clear if X was working for me either as I still have pain and discomfort from the pleural and peritoneal mets. Thankfully my scan came back as stable so we’re pressing ahead with another two rounds before we revisit again. Hopefully by then we will see improvement.
I also want to say welcome Heather. I am new to this thread but want you to know that you will find great support here.
Sending gentle hugs for a SE free rest of the week.
Pat
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I hope everyone is doing well. Does anyone know: SPECIFICALLY OF A member on this site with peritoneal involvement that has been approved for the laparoscopic HIPEC procedure with MBC an had it done? I know there are a couple of links with regards to discussion on the HIPEC procedure--but I cant find anyone on here, who has actually had the procedure done. Please let me know if anyone has any feedback about this. And thank you so much!
heather
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Artist, I'm so sorry!!! I had to make the technicians move the needle around with each procedure (7 times) to make sure they weren't trying to push that needle through scar tissue. I was surprised how fast it developed. It just made it harder to get the needle in and the pressure was painful as hell. Some technicians and doctors were great and some not so much. I took a pain pill before I went in for the procedure and it helped a lot. I would ask someone about the stitch in your side. You can get infections so I would stay on top of it. Wrapping you in a big hug....Cathy
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Heatherbless - there is an interesting post about lobular mets to the gastro area about 3/4 of the way down the page.
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Heatherbless - I meant to say HIPEC and lobular abdominal mets.
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Can I just say Gemzar/Cisplatin sucks day 4 and 5. Hoping day 6 is better. Can't muster the energy to do anything. Ugh.
My FoundationOne is a no go for now, not enough tissue. Going to wait to see how this works since we just started. Jan is my next scan.
This stuff better be working cause I feel like crap today.
Good note, all my Christmas stuff has been up for a couple of weeks now, so I've been enjoying that.....and Hallmark
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Artist - I'm so sorry for what you're going through with ascites and those procedures. I hope and pray Madame X will bring you relief.
Pat - Stable sounds good to me!
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Sadie thanks! I get a lot of pain from the mets even right after a para. Like everything stretched out and now is contracting badly. Had one yesterday in fact. I hope the next round proves this med to be working for you..
heather, Sorry i can't help but have never heard of this one. Will check out CCS's link!
retro, Had a para yesterday and asked him about the stitch. He said it was just residual pain from the low location of the needle insertion. This guy was sooooooo good I made the comment that I wish I could pick my dream team whenever I have to go. The nurse, who I also LOVE said "You can"! Just call the appointment lady and request a day he is there. Who know? It makes SUCH a difference. I think I will try a BIGGER pain pill than Tylenol next time even though I am so paranoid of the big C. Felt so much better after and all day. Then today woke up with nausea and fatigue from the Xeloda I guess.
Thanks for the link CCS!
Milwmama, Hope day 6 goes better. I've been sitting on the couch enjoying my tree along with Hallmark too (AND Turner classics!)
Thanks Linda! I'm hoping it's just a rough start and my body will adjust to the X. Hope you are doing OK..
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Artist - I hope you're feeling better from this latest para. My bloating is stable, I'm touching wood. Scan next Tuesday. TMs always on the rise. Moving on to Halaven if progression.
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Linda, I did feel somewhat better. But do have a big C problem that is not helping the abs discomfort. Seems like the bloating is slowing down but this Xeloda causes nausea and extreme fatigue. So between all 3 symptoms I still feel like CRAP-OLA most of the time. Think we may be up for a dose reduction.
I'm touching wood with you too! Hope you get good scans and can stay on current Tx!
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Artist, I hope you get some relief from a dose reduction. I have been very fortunate and Madame X has not caused any major issues so far. Of course, we are not sure how effective it is for me.... only time will tell!
So happy it’s Friday. I am exhausted after a very busy work week. Time to rest.
Hugs. Pat.
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Hi all - how are y'all today? Artist - that para sounds miserable but I'm so glad you have found someone who is good at it! What a difference that makes, for sure. Hoping Xeloda kicks in for you. It did make me nauseous but only at night, which was weird. I started taking nausea meds before I took X each night to combat that. I was on a high dose - 4 pills on am and 3 in pm.
I've been in bed yesterday and today with a terrible cough and bad sore throat. I'm sure it's a virus, but I coughed so much last night that I got sick. Not fun.
I just had my 2nd infusion on cycle 7 of Halaven on Tuesday. Hard to tell how the chemo made me feel as I feel so bad with this head cold/virus. Next week is my off week, so I'm looking forward to getting some Christmas stuff done. Not so fun having to plan tasks around chemo cycles but I know we all do it. That's our lives now.
Heatherbless - unfortunately I know nothing about HIPEC or anyone that has had that done.
Sorry Milwmama about the Gemzar/Cisplatin. I was on Gemzar/Carboplatin combo for awhile and it wasn't an easy one for me.
Linda, praying for a good scan this week. If not, I do want you to know Halaven may be a good option as it has worked well so far for me.
Hi to Sadie and Cathy - hope you all can enjoy the weekend.
Sorry if I missed anyone - my head is in a total fog right now.0
