peritoneal carcinomatosis
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Linda, I haven't heard of that chemo yet either but hope they get it all figured out before you get full blown ascites, a true MISERY. I've had a paracentesis every week for 5 weeks and it just sets me back from feeling better. I started Abraxane and hope the next infusion or two stops this in it's tracks.
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Artist, I dread ascites and cannot imagine how uncomfortable it makes you feel. Rooting for you and hoping Abraxane does the job quickly.
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Linda so sorry to hear about your peritoneal Mets. I had epirubicin after my initial diagnosis in 2010, part of FEC chemo. It did make me badly nauseous but it will very likely be given differently for stage iv and maybe won't affect you so bad. Emend really helped. I mostly remember how bad it smelled when being administered, made me sick just smelling it, so I took something nicely perfumed to hold to my nose when it got bad. I hope they get you started on something soon and get the Mets knocked out.
Artist, hoping the abraxane works quickly for you.
Much love to everyone, have a good weekend xxxx
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when I first started on this thread it seemed like belly mets where mostly associated with ILC now there are more with IDC , little bastards. Sorry you new ladies are here.
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Welcome, Linda - I haven't heard of this chemo either but I pray it works for you. Please keep us updated on how you are doing. Glad you found us here.
All - Dianarose and I were discussing this today: how have doctors resolved blockages caused by your belly mets in the past to allow you to resume eating? Surgery? Chemo? Meds? For myself, my duodenum was 100% blocked and chemo or any other meds didn't shrink my blockage at all. I had to have major stomach surgery to be able to eat. I don't think this is the case for most of you, so I would love to hear what worked for you.
Hope you each have a good, pain-free and nausea-free weekend!
Hugs! Sheri
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Southern, So far I can eat when I am not nauseous but it is very slow coming out the other end. Today I drank a bottle of Magnesium citrate and hoping to resolve. No blockage so far and I PRAY that the meds kick help shrink this monster.
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No blockages here yet either. Eating is a challenge with nausea/vomiting, I'm rarely hungry and taste buds are all out of whack with chemo.
Artist - I went through hell with oral thrush and mouth sores triggered by chemo and rads. I hope you don't get this but better be prepared. Rinse with salt and baking soda 2 to 3 times a day for prevention. A script for magic mouthwash is necessary if you're unlucky to get this.
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I had a major blockage in my colon due to the mets on the outside of the colon pressing in and causing it to be too narrow. I had a stent inserted and all was great for 4 months, I could eat really well. Now I had some progression, the colon has narrowed again. Looks like I might be getting a longer stent.
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I had a major blockage in my colon due to the mets on the outside of the colon pressing in and causing it to be too narrow. I had a stent inserted and all was great for 4 months, I could eat really well. Now I had some progression, the colon has narrowed again. Looks like I might be getting a longer stent.
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Thanks, Blume - that's very interesting. I had a stent inserted in my duodenum to open it up and allow me to eat. It lasted only 2 months and unfortunately, it never worked that well for me. In that time, my tissue grew within the stent and blocked it completely again. That is when I got the feeding tube (a j-tube) which had to be threaded through my blocked duodenum and down into my intestines. That stent will be there until I die as it's embedded in my tissue. I really hope they can put a longer one in for you, as it sounds like yours worked well for a time. I ended up having surgery to move my intestines to come off my stomach on my left side to bypass my blockage. It's crazy the things we have to do to eat - and live!0
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Hello everyone. I am so glad to have found this community. I live in Australia but am unable to find any other sites here that have women suffering from my condition so I have had to head overseas. A bit about me. I am a 43 year old mum of seven ranging in age from 23 to 7. I was originally diagnosed with stage 3 ILC in Sept 2013 and underwent the full range of treatment including mastectomy, chemo, radiation and hormone therapy. Unfortunately being pre menopausal I could only take tamoxifen and it made me suicidal so couldn't take it anymore. Flashforward to August 2016 and I was eagerly waiting to have my breast reconstruction surgery when some stomach pain I had been having for a few months off and on really flared up and had me crying in a ball and getting my husband to take me to the ER after 3 straight days of pain. I thought maybe a gall stone or something but no.....CT scan revealed I had multiple bone mets and malignant ascites from peritoneal mets. Really not what I was expecting as I thought BC was behind me. So since then I have had 4 drains, the biggest being 9 litres done overnight in hospital. I started taxol in February and so far so good. I have had no more ascites and my bone meets seem to have decreased.
It has been great for me to read all of your stories so far so now I understand why I am struggling to find any forums here in Australia as this particular form of stage 4 is quite uncommon. As a family we have been having a lot of holidays while I still can and in 3 weeks my husband and I are off to Alaska and Canada so I can fulfill my ultimate bucket list item. My oncologist wants me to take a break from the taxol now for a while which scares me because so far it is working and what if the ascites comes back in a couple of months and the taxol doesn't work a second time. At least I have found all you wonderful ladies and I hope together we can continue to keep fighting the good fight and have some wins.
Sorry for the long rant . Just so happy to find others who understand , although I wish none of us needed to be here.
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Aussiemumma - Welcome to this thread and glad you found us. In reading your post, I found it very encouraging that ascites didn't come back with Taxol! There is also a bone mets thread you may wish to visit. Lots on info on these forums, knowledge and support! Keep us posted.
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Hello Aussie, Sorry you have to be here with us but welcome. I also find it encouraging too about the ascites clearing up. I absolutely HATE go in for a drain...5 so far and tears every time. I pray this current Tx does that and SOON!
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Hi Aussiemumma - welcome! Glad you found us here. Very happy to hear taxol has worked for you and your ascites. I have a small amount of ascites shown on scans but haven't had to have any procedures yet for it. I'm on Halaven now hoping that will clear it up along with taming back my ILC.
Hope all of you are hanging in there and feeling OK. I had my sister shave my head yesterday as my hair was just falling out in droves due to the Halaven. Not liking my bald head again - this is the 3rd time around. I have a new wig and today will be the first time I wear it. Just pretty down about the whole thing - constant reminder of how much I hate this cancer!0 -
I will be joining the shave club shortly Southern (first time) and can anticipate tears already. Have had long thick hair my whole life. Last time I was bald was when I was born. Got a good wig already and a selection of snappy hats and scarves so guess I will deal like everything thrown at us.....
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Artist - so sorry you will be losing your hair too. You are on Abraxane, right? I was on that when I lost my hair for the 2nd time. Yes, it's very emotional. I had short hair this time but when it started falling out 15-20 strands of hair at a time, I just couldn't take it. Glad you got your wig and hats ready. I wear my hats around the house and don't wear my wig unless I go out. I prefer comfort!
How is your ascites doing? Hope this Abraxane makes it go completely away.
Hugs to all
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Southernsurvivor and Artist so sorry about the hair coming off, Dani was soooo young when she did that the first time, she also decided to shave it off instead of having it fall in clumps. Oh it hurt me so, but she's a straight shooter, she was not gonna give this monster the upper hand, that was her thinking. She did get reimbursed of r a gorgeous wig. She did it twice more. Her hair never got close to what it was, not the length or texture. It was never given a chance even. Let's just pray this treatment starts working real fast.
Dianarose so how are you feeling now?
Australiamuma so glad you found these wonderful group it's a lifesaver in itself.
Blume sorry for the progression, I am trying to find out how serious is this parcolic lesions that they found in Dani's last CT scan, i see it's right by the colon so it really makes me nervous, and it's new. (of course she's got all else, that did not budge but they are trying to overlook stuff to get this trial a chance)
LindaE walking along with you.
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Still struggling with diarrhea! Just can't figure it out. Very frustrating. Makes me weak.
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WOW so sorry - they gotta do better than this. Of course it makes you weak. What do they say? Let them ask other colleagues somewhere else....
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thank you everyone for your welcomes. Southern survivor and artist sorry you have to be losing your hair. I was really upset the first time too as like you artist I had long thick hair and definitely shaved it before I could see the clumps coming out....grew it back to shoulder length after and so this time just left it. It has thinned heaps and definitely no eyebrows or lashes left either. Will have see about just shaving the last of the straggly bits off I guess. Dianarose so sorry to hear about your horrible side effects at the moment. I hope it gets sorted for u soon. Keep smiling everyone so we can enjoy all the wonderful times we can.
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Southern, Another paracentesis tomorrow and pray it is the last. My 2nd infusion on Monday just had me paralyzed with fatigue yesterday and today. Feeling a little better but have a long way to go. I just want to DO something besides lay around but can barely drag my behind to the bathroom.
Yes, besides losing the hair my skin looks sallow and wrinkled. I look like I aged 25 years in 3 months. Hope for marked improvement as I feel better. Tried on my "mother of the bride" dress today and my husband took a pic for me and I just cried....Looked so old......
Diana, Yes that will just suck the life out of you. Hope it stops soon. We need every drop of energy we can get.
Aussie, I will get over the hair I guess. Just want to be able to get around....
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Ausiemumma welcome - yes it is a strange form of cancer we have. I am British living in Germany but found this forum to be the most informative and helpful. Do enjoy your holidays, we are doing the same here! Great to hear taxol is working for you, I hope it works for a long long time.
Southern pleased the j-tube is working for you. Southern and Artist, sorry to hear about the hair loss, it is such a shock, one of the many many things we have to deal with.
Dianarose sorry to hear about the continuing diarrhea. Are you still taking Ibrance? The only side effect I have so far is mild diarrhea, although for me just now it is a positive side effect whilst my colon is restricted.
Mom so hoping the trial is a success for Dani, sending positive thoughts for her and for everyone else.
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Hello all and welcome to the newbies!! Had 2 good days last week!! When I saw my physician's assistant last week my stomach was quite distended and I was having lots of gas pain. She also said after listening that my system was pretty listless. She sent me in for a CT scan and NOTHING showed up. I have this continuing problem of nothing showing up on scans. I don't want anything to be wrong but since I know something is, it would be nice for some kind of verification. I guess as long as I'm being treated for cancer that hopefully it wont just get away from us. Had a really bad episode from Tuesday into late Wednesday. It was the longest attack I've had so far. Travelling to see family this weekend. My poor daughter who was going along to take care of me twisted her ankle quite badly so she is going with crutches. What a week. Wishing all of you the very best!! LOVE and HUGS, Cathy
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I had the distended stomach last year and had s blockage. Ended up having my stomach pumped for two and a half days. Horrible experience! I hope yours is all gas!
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Hi all - oh gosh, we have to have a lot of procedures to keep us going. Hate that - certainly not easy.
Blume, just to clarify, I'm not on the j-tube any longer. Was on it for almost 9 months in 2014/2015. I had major stomach surgery in March 2015 to get me off the tube and enable me to eat.
Cathy, it is interesting that nothing shows up on your scan. I too would wonder what is going on! Mine definitely shows up on the scans, not that that is really a good thing.
Saying prayers for all of you this evening.
💕💕💕
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This thread is quiet. How are all you ladies doing?
Must say I'm still having a hard time lately with nausea/vomiting, getting weaker and more tired. The last few days I fiddled around with anti-nausea meds to find adequate dosage to keep some food down. Never felt so crappy since dx.
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Linda- sorry you are feeling so bad. What treatment are you doing? I have a ton of nausea too. It so sucks! Vomiting is the worst. So sorry!
On my way to cancer center to get another round of A/C if my blood counts are good enough. Woke up with an ocular migraine with the light show. Hate them.
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I'm on Taxol right now. A biopsy of liver was done last week and depending on results will change tx. Also taking 16 mg of Zofran in the morning, 8 mg 8 hours later and zyprexa (sp?) at night. Yuck on migraines - hope it subsides soon!
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Ended up with a second ocular migraine when we got to the cancer . Then they gave me too much Ativan and have had double vision for two hours now. This sucks! I was surprised she gave me the chemo as my platelets are only at 50
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Dianarose and Linda, sorry you are both having issues right now. I hate N/V - so very miserable. Zofran doesn't work for me at all. I take Promethazine, which works quite well.
Dianarose - migraines on top of everything else?? Ugh. I'm assuming you have meds for those from a neurologist? You certainly don't need to deal with one more thing. Your platelets do seem very low but I don't know how much the doctors take platelets into account for chemo.
Saying prayers right now for relief for us all. Hugs to everyone.
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