How are people with liver mets doing?
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Way to go Grannax, I am very excited for you
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Finally signs of intelligence...on article on precautions people with compromised immune systems have to take to survive deadly fungal infections commonly found in hospitals.....
The advocacy group Global Action Fund for Fungal Infections estimatesthat fungal diseases cause between 1.5 million and 2 million deaths every year. Many of these occur among people who develop fungal sepsis in hospital.
Some fungal diseases can be extremely serious and, particularly for those with compromised immune systems, even life threatening. People living with HIV; cancer patients; people who are admitted to hospital; people who are critically ill after trauma or surgery; and premature babies are among those most at risk.
Some fungal diseases are very difficult to diagnose because the available laboratory tests don't pick up all true cases of disease, laboratory tests are not available or because fungal diseases can be mistaken for tuberculosis. Another concern is that doctors may not consider fungal diseases when they see ill patients.
If you're admitted to hospital and have a urine catheter or a drip in place, ask every day if you still need the catheter or drip. Removing urine catheters and drips reduces your risk of developing an infection in hospital.
YEP Folks! Can't make this stuff up!
We should take fungal infections more seriously. Here's why
http://theconversation.com/we-should-take-fungal-infections-more-seriously-heres-why-1040220 -
Hey ladies, just wanted to check in around the anniversary of my NED date. Sept 30th was 12 years no evidence of disease after being Dx out of the box with liver mets in early 2006. I know when I was first diagnosed I really scrambled to this board, begging to find someone that had lived longer than 5 years from Dx; I had a surgeon tell me I wouldn't live to see 50 when I was 44. Needless to say, he was wrong. I was taken off Herceptin long ago, had a heart "event" 4 years ago resulting in 4 stents and am on an AI forever. I still have my port, not sure why, but it hasn't given me any problems so I get it flushed and a "look/see" from my Onc every 4 months. It's a world I'm not willing to step out of totally, as I guess I feel like if I leave "it" will come back.....I don't know. My Onc doesn't want to scan me for no reason, but believe me, I still freak out at every ache and pain and lump.....I recently had an MRI of the thigh. It was "unremarkable" (I really hate that word!). In other words, fatty tissue. I had to get off these boards on a regular basis because some women I knew years ago are no longer here; my own well being was suffering. But once a year around this time, I pop on cos I know some of you are searching as I was, hoping to find someone that is past that 5/10 year mark (hoping to get to a 20/30 mark!) so I want you to know we're out here. Please don't believe all the statistics.
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A little freaked out right now. My LFT's are getting worse. My TM's have gone from 490 to 1300 in 5 weeks but scans say things are stable even though I have new rib pain and nausea. Onc wants to start me on Gemcarbo asap which also makes me nervous because of nausea side effects. Has anyone experienced changes like this then have it settle down or did it just get worse?
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leftfoot-Sorry that you have to change treatments. I hope the next one works, and has minimal side effects.
jjb1984-Very happy for you. That's awesome. I've been fighting this for 13 years now (I was 43, found on a routine mammogram). After first being diagnosed Stage 1 in 2005, it came back (I had only an 8% chance of it coming back, according to the Oncotype Dx test) in 2012, not in my breast, but in my spine and lung (now also my liver, and most of my bones, except the legs and arms). I hope that you remain NED and glad that you post here to give others hope! Congrats!
Tennille-I'm sorry that the tumor markers have gone up. Mine are currently jumping up too. I have only had 2 doses of this chemo, and had to hold off last week because my white cells were too low. Shooting for this Fri now. Last time they started jumping on my last chemo, she did my scans a month early (at the 2 month mark). Yup, after over a year, Taxotere had stopped working for me. I know a friend of mine was having the same issue as you (she's on here, also named Lynne). Her scans were clear with her tms rising quickly. I believe it was like that for a year before they finally saw something on the scans. I have never been on Gemcarbo, so I can't help you there. Big Hugs! Good luck.
Have a good day, everyone!
Lynne
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leftfoot-Sorry that you have to change treatments. I hope the next one works, and has minimal side effects.
jjb1984-Very happy for you. That's awesome. I've been fighting this for 13 years now (I was 43, found on a routine mammogram). After first being diagnosed Stage 1 in 2005, it came back (I had only an 8% chance of it coming back, according to the Oncotype Dx test) in 2012, not in my breast, but in my spine and lung (now also my liver, and most of my bones, except the legs and arms). I hope that you remain NED and glad that you post here to give others hope! Congrats!
Tennille-I'm sorry that the tumor markers have gone up. Mine are currently jumping up too. I have only had 2 doses of this chemo, and had to hold off last week because my white cells were too low. Shooting for this Fri now. Last time they started jumping on my last chemo, she did my scans a month early (at the 2 month mark). Yup, after over a year, Taxotere had stopped working for me. I know a friend of mine was having the same issue as you (she's on here, also named Lynne). Her scans were clear with her tms rising quickly. I believe it was like that for a year before they finally saw something on the scans. I have never been on Gemcarbo, so I can't help you there. Big Hugs! Good luck.
Have a good day, everyone!
Lynne
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Grannax- so excited for you! You will rock the runway pretty lady!
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I am on carbogem and I have a little bit of nausea the third day-but it is not bad at all and does not last more than a day or two.
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I am on carbo and Gemzar and have very little nausea if any
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leftfoot - sorry to hear your news.
jjb - that does give me hope!
I’m still here, following along. Sad to see that several members have passed in the past few months, especially Robin which was a real shocker.
Still doing well on the DS8201 trial. At my last CT, my remaining liver lesion only measured .7cm (2.7cm at the start). I have a brain mri coming up so hopefully the results will allow me to stay the course of treatment.
Love to you all.
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I bought some glittery heels for the runway. They feel comfortable, maybe I won’t trip. Yike0 -
Grannax2, those shoes are beautiful and I'm glad they're comfortable too. The green rimmed clock behind them is lovely too. I pray it goes well for you.
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jjb - What amazing and inspiring news. I was dx at 44 with stage 1, and told I had a 6 percent chance of recurrence --and dontcha know it happened anyway in July 2017. I have been stage iv since, with liver mets. On Taxol, herceptin, perjeta and every scan shows real improvement. I am gunning for NED! I need hope that I may get there and stay there. You were so kind to post on your anniversary. Thank you. I will read and reread and reread your post! The rest of you inspire me as well. So many wonderful people living full lives despite the challenges. xox
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Grannax-Beautiful shoes. Glad they are comfortable too!
Lynne
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Cinloo great news. Stay the course, sometimes it takes awhile to get the NED you're hoping for.
Tomorrow is my big day. I'll let you know how my pretty shoes work out. I still don't know how my boob problem is going to be resolved. Suzanne says their seamstress will bring her sewing machine and make some straps. So, will I be able to wear my mastectomy bra or will she sew a pocket into the dress? I hope I can still wear my bra. I'll take two different ones, of course you know mastectomy bras are not pretty little tiny things with tiny straps. They are usually heavy duty to hold up that heavy prosthesis. Where there's a will, there's a way. I just don't want to worry about lop- sided boobs while I'm walking the runway.
I'll let you know tomorrow night or Saturday morning.
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Grannax, Those shoes are beautiful. I am sure the seamstress will be able to make all the adjustments that will be needed to the dress.You will look beautiful. I can’t wait to hear all about your special day and night.
Hugs and prayers from, Lynne
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jjb1984, thank you!!!!!! Wow!!!!!!! What a blessing you are:) I understand completely but I’m sure grateful for this pop in
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Hi,
Delurking to introduce myself. I'm a stand-in for my sister who is not allowed to be on the internet.
My sister was originally diagnosed with breast cancer when she was 46. That was 4 years ago while she was pregnant with her second child. She found a lump and although her midwives brushed it off, she went immediately to her doctor and was in chemotherapy two days later. Niece is healthy (and a holy terror) - and after a year, my sister was declared cancer free.
About a year after that, she felt her lymph nodes and "didn't feel right." Luckily her doctors took her seriously and she had a scan which showed stage IV cancer with small mets to liver and bone. I don't want to be too specific about her treatments because I don't know them by heart and I don't want to mistype anything. I will confirm them with her and add them to my profile - but please note she needs to be in the right frame of mind to go through them all with me. But the important thing to note is that her cancer has morphed over two years from +/+/- to +/+/+ to now -/-/-. Even though it really stinks to be triple negative, we are grateful that we know so that she can get appropriate treatment.
Right now, my sister is enrolled in a small trial, QUILT-2.028. I'm not allowed to post the link but you can look it up. It's a combination of immunology, radiation, chemo and "vaccines." I'm nervous about it since it is funded by a controversial figure (Patrick Shoon-Shiong) - but I have to believe in it for her sake plus her MO has been excellent so far and recommended it to her.
She's exhausted and her hair has fallen out and she is scared and overwhelmed with two young daughters and two young kittens (although the kittens are very calming when she is resting after treatment).
In the meantime, I wanted to thank you all for your candor and research. I share what I learn here with my sister and she gets a lot of comfort from your stories.
If you have any questions about her trial, please let me know and I will pass along the questions to her.
You all continue to be in my prayers as you have been for the last 2 years.
Oh, and Grannax2 - great shoes!!
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coolbluewater. What a calming name you have and what a great sister you are.
Sounds like a complicated situation for your sister. I know nothing about clinical trials or triple negative but someone here will chime in. We do have a triple negative thread here. You might want to check it out.
It sounds like this her first treatment since she "was DX with mets? Did they do the BX on a liver tumor or lymph node?
She is too young for all this. . But,
Having all the correct info is key. Sounds like a very interesting trial.
Thanks ladies, on my glittery shoes. They were kind of a splurge for me. But they were deeply discounted at Ross, my favorite store. I cannot resist a bargain.
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They are gorgeous!!!! Cannot wait for pictures!!
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coolbluewater. What a calming name you have and what a great sister you are.
Sounds like a complicated situation for your sister. I know nothing about clinical trials or triple negative but someone here will chime in. We do have a triple negative thread here. You might want to check it out.
It sounds like this her first treatment since she "was DX with mets? Did they do the BX on a liver tumor or lymph node?
She is too young for all this. . But,
Having all the correct info is key. Sounds like a very interesting trial.
Thanks ladies, on my glittery shoes. They were kind of a splurge for me. But they were deeply discounted at Ross, my favorite store. I cannot resist a bargain.
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Hi coolbluewater - sorry you had reason to join, but glad you found this forum, and on behalf of your sister. I don't pretend to know a lot about it, but I just wanted to say that one of the people on my medical team highly recommended going to the Soon-Shiong institute and the trials going on there. Hopefully it works well for her! I'd to know more about the trial... how she decided that was a good option for her and how it goes for her. Please keep us in the loop on how she is doing. And of course, if she has any questions for the collective knowledge of this group. I was diagnosed shortly after the birth of my second child, highly ER+ at the time. Re-diagnosed less than a year later with TNBC liver mets. So it sounds like a dissimilar set of diangoses/timeline.
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moving to weekly taxol and Herceptin/perjeta every 3 weeks.
Hoping heart can take the Herceptin.
Going to kick sone cancer cells ass!
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leftfootforward, have you had taxol before? I had 12 weeks as first treatment. You probably know but there's a Weekly Taxol thread that I still follow.
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muddlingthriugh- I was in taxol almost 7 years ago with my initial treatment. Time to go back as I’vebeen on most everything I can be during this journey. Thsnks for the reminder of the link. I’ll go look it up.
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leftfootforward, I’m on round four of Abraxane which is a sister drug to Taxol. I had failed two other treatments beforehand and had progression. The Abraxane is working right now!!!! I hope you get a great response on taxol
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Here I am on the catwalk! I did have fun and I was not as nervous as I thought I would be I did NO T fall down I love my dress I tried on several but once I put this one on that was it I get to keep the gown and jewelry
Once I saw how short the walk was I thought it was doable It helped to have the model with me One time I got really wobbly and the model kept me from losing my balance My son did not get to walk me after all But we got great pics afterwards I’ll share more
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Beautiful! You walked for all of us. More photos.
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Grannax, you look beautiful! I love the dress. What an amazing experience. You are a rock star!
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Grannax2, wowza! Beautiful! What an experience! Thank you for pushing thru and doing it
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