Triple Negative Stage IV
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Welcome, Newbies!
Faith, I am so sad that you are going through this at such a young age!
We had to put our dear little Angus to sleep last Wednesday, the 19th. Sadness makes me write. Here is a tribute to him:
A Tribute to Angus
You came to us packaged in a soft towel on Christmas morning
of 2003.You were a “gift from Santa”.You tried to behave in the kennel while we trained you, and
you woke us up in the morning with your “song”.Too cute to be contained in one place, we let you out, a
little bit at a time, into different parts of the house.Until it was no longer our house, it was your house, and we
just lived in it.You patiently waited for us to arrive home from school and
work.You could not contain your
happiness as you wagged your stiff little tail briskly.Our daily homecomings created such
excitement you would run around the house in a frenzy, often running in place as the wooden
floors were slippery.One day, during one of our walks, you stopped and looked at
me as if to say, “Don’t you notice these photographs on the street?Why don’t you turn one over so you can
see?”So I turned one over and I was thunderstruck.It was a portrait of me.How did 20 or so photos of me end up on the
street and how did you know these were of me, little Angus? (I later found out
how this happened but I was still in awe at the way he knew those photos were
from our house!)Long before my first diagnosis, you knew I had the beast in
my body.You tried to tell me by
smelling under my left arm and perking your ears in the middle of the night.Thank you for understanding that I needed more cuddling than
usual.Thank you for draping your longish
body over mine as I got chills from the chemo.What did we ever do before you came into our lives?I got better, then I got sick again, and
there were other huge problems along the way.But you were always there to let us know that nothing is so bad that
lying outside in the sunshine won’t fix.You reminded us every day that things will get better.Until 2013.
2013 was not a good year.First Mama passed away early in the year.Then, several days into September,you and I were diagnosed with a terminal
illness almost on the same day!I was an old hand at this cancer business.I looked at you, still vibrant and
symptom-free, dreading how you’d feel several months down the road.My heart broke only for you.Thank you for licking my tears.
You taught me how to be courageous in the face of illness.You struggled quietly, and asked to be left
alone.We were armed with pills and
tablets to relieve you of your pain, but you wanted to be brave and let on as
little as possible.We know how much you loved us.We were the most-loved humans in the world.Did you know how much we loved you?You were the most-loved dog in the world.
Today, as you leave to go to Dr. Alexander, Juan says it
might be the day.I can’t go with
you.I don’t want you to go, not
yet.Did you not eat the steak dish last
night?The egg whites this morning?Did you not acknowledge me when I stepped
down to give you a hug?I know I am being selfish, but I am hoping for another
reprieve.Juan has to keep his promise to you, though.He tells you every morning that he won’t
allow you to suffer needlessly.Though
he hurts so much, Juan will do right by you.Through tears I give you a kiss on your long face, and you
look like you are at peace.0 -
Oh, Brenda. I am so sorry. What a wonderful tribute you've written. What a wonderful life you gave your Angus, and what a wonderful companion he was for you. I'm sorry.
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Thanks, surf. How are you doing?
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Brenda, that is SO beautiful. What a wonderful tribute. I know he will still be there with you every moment in your heart.
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Thanks, Cat. I miss him so much!
Love,
Brenda
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Oh Brenda, what a wonderful tribute to your dog. Made me cry....whats left to say?
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Brenda,
What a beautiful tribute. I'm so sorry for you loss. I'm glad Angus is at peace.
Laura
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I did get my test results back from the muga scan and they were good, so I started on Doxil, Monday. Only problem with that is I have to take neulasta with it, which a lot of times is worse than the chemo itself. Oh well, cant ever be easy, can it?
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MaryH - so glad your scans were good, and you've got a new arrow to draw from you quiver. I"m keeping my fingers crossed that it treats you right.
I've got a date with the couch tonight. I had a bladder biopsy today. My CT scan 2 weeks ago showed my bladder was odd shaped and an area of "concern" in my bladder. Followed up quickly with a cystoscope that revealed an area - the likes of which - my Urologist said he didn't know what it was - he had never seen anything like it before. With that crazy bedside manner quote, he sent me on my way with 10 days of penicillin and then back today for the biopsy. My concern was that on the CT scan, it showed the area lighting up in my bladder and including the fat outside the bladder, so I'm thinking a tumor that extended through the bladder which is never good - according to dr. google - often results in losing the bladder. I went into the bladder biopsy with platelets of only 75 (he was hoping for at least 100), but said he would cauterize it good. I'm still here, so obviously, that part went ok. He said the area looked better and smaller than it did when he saw me 10 days ago. So that's a good sign, since tumors don't respond to Penicillin x 10 days. Makes it more likely that it was an irritation from a bad bladder infection. I'm breathing a little sigh of relief to at least have it behind me. I'll breathe a bigger (huge in fact) in 10 days when the biopsy results are back showing that there isn't a new tumor and I can keep my bladder. After all these years, my bladder and I have become pretty attached. Thank goodness for anesthesia and Ativan!
I hope everyone's holding their own these days!
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Here's hoping that all is ok with your bladder, fingers crossed surfdreams....
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surfdreams hope the bladder turns out to be something easily fixed
Brenda so sorry for the loss.
I'm crying with you.Mary- how often will you be getting the Doxil? Just wondered I get it every 3 weeks and without the horrible shot. I hate that thing.
Faith- Hello and sorry you have to be here.
Had scans of chest and abdomen last Thurs and will get results this Thurs. I fear the news will not be good. Trying not to think about it. My anxiety this month has been through the roof and I think I will have to break down and ask for something. I hate that it makes me feel weak.
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Thanks, ladies!
Mary, I hope doxil does the trick! You have been through the ringer!
Surf: Thank goodness your bladder is improving! No, cancer does not get better with penicillin!
Lost: I hope doxil worked and that your scans look good!!!
Hugs,
Brenda
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Lostinmo-= A little Ativan never hurt anyone and it is one that you can use only when the stress levels build through the roof if you want. 1/2 mg. didn't do much for me, but I've found 1 mg. is just right for me. Please ask your oncologist about a prescription for it or something that might be helpful. I don't use it often, but when I do, it is sooo warranted! I can handle everyday stress, but after awhile, things build up and up and I'm as jumpy as a cat on a hot tin roof and can't calm down. This puts things back into perspective and eliminates the stress. (Well - maybe not entirely, but sure puts it back on an even keel). It doesn't make you weak to need some help. It makes you human. I put off asking for it for a long time too, and now I wonder why. {{hugs}}
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And a belated welcome to the new girls who have joined us. I'm so sorry you've had to find yourselves here, but welcome to the group! It's a scary time that does get easier to deal with. I hope you're all getting your treatment plans in place and that the new chemos are being kind to you. Please don't lurk. Jump in and let us know how you're doing.
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Surf - thanks for the chuckle (my bladder and I have become pretty attached...) Glad your sense of humor is intact. Hope things keep going in the right direction!
Laura
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surfdreams- My dr gave me ativan in 2012 to help me sleep during chemo. Those 30 pills lasted until earlier this month. LOL I don't take often but when stress hits hard I like to have a choice.
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yes - many of our sisters take something daily for the anxiety/depression. Others need to just have something on hand to take the edge off. Don't be afraid to ask for it. You've definitely earned it!
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Hi, new to the group with lots of questions. I received my Stage IV diagnosis at the beginning of the month, have 5 nodules in my back but only 2 lighting up on the PET scan. My doctor wants to take them out with radiofrequency ablation (basically like a biopsy with radio frequency that pretty much fries them). And I'm cool with that. BUT she says that other than that I am asymptomatic and she wants to hold off on chemo for as long as possible - months or even YEARS and just watch and see if any of the other nodule are cancerous. She says she can't prolong my life but can prolong the length of time I don't feel sick. I am going for a second opinion from another treatment center. I also have an option to participate in a Phase II clinical trial that combines Abraxane and Avastin, but the side effects sound so numerous and awful. I handled chemo okay the first time through. Have any of you had experience with these two, either singularly or in combo - and what kind of SEs to you have?
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Aimee-sorry you are joining us but welcome. I can't answer about the meds.
So yesterday was suppose to be my chemo day. At my Dr appt I told them about all the pain I have been having and we also talked about the stress levels.
He postponed chemo to get a ultrasound of my abdomen to make sure the doxil is working and that nothing new has appeared. The ct scan from last week didn't show the liver very well. It did show that the nodules in my lungs were slowly dissolving. That's good.
He took me off the warfin for the blood thinner and put me on a newer medication for dissolving clots. I don't have to watch what I eat with the new one!! Liking that.
They put me on a mild antidepressant. Ordered me some pain pills. Next tues I go back to get the us results and chemo. But I'm feeling pretty good about the results. The radiologist came in afterword and said he didn't see anything new and that he thought the liver was enlarged because of the tumor cells inside it were dying off. I am hoping I heard and understood him right.
The liver is also where all my pain is located. If this is the case I can deal with the pain knowing it's the chemo killing.0 -
Aimee, welcome to this board. Sorry that you are here, but glad there is a place for you to get info and support. I'm a little confused with what you posted. You say you have nodules in your back. Are they subcutaneous, in the muscle, or in the bones? Did any organs show any sign of involvement?
I don't understand why your MO would say that they can't extend your life with chemo. To me, that doesn't make sense. I have numerous nodules in my skin and chest wall. I am currently on chemo, and with 2 opinions, both MO's absolutely said that chemo could extend my life. We just have to balance out QOL with tx. So Far I've been on 3 different cocktails, and I can say that the 1st was the worse. My recurrence tx have been very tolerable. Although the dr's say I won't be "cured", they are hopeful for an extended life expectancy due to the chemo, and we are also looking into clinical trials.
My stage is still technically IIIC even though I have skin and chest wall metastases. I was told stage IV was only if a visceral organ or bones were involved. This Monday, I will have a PET and brain MRI. Hopefully, it will show no organ involvement, although I know more nodules have shown up in my chest. I also was getting headaches, thus the MRI, but they could have been due to stress or soreness from my neck nodes.
Aimee, please get a second opinion. I want you to be able to get the best treatment possible. Let us know how you make out. ((hugs))
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Aimee,
I know a lot of people who have done well with Avastin alone. Abraxane is like taxol and taxotere, right? So if you have had any of these two, it would be similar. I heard that abraxane was better s/e wise.
Good luck to you and happy to note you are going to seek a second opinion.
Hugs,
Brenda
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Sorry I misspoke. The nodules are in my lungs in three different areas. I am going in on Thursday for a second opinion from Seattle Cancer Care Alliance. I am also talking with them about a Phase II clinical Trial combining Abraxane and Avastin. I am also scheduled on Friday for the radiofrequency ablation for the first of the two malignant nodules. I feel very good right now, no issues and you wouldn't know I was sick to look at me. The thought of going back on chemo, losing my hair again and all the SEs, it feels like once I start down this path again I will never feel well another day of my life. Feeling so conflicted right now.
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I ended up not doing the clinical trial. They were just taking too long to test my tissue for a certain protein. I did all their other tests and all were fine. I waited a week and a half and was still hearing, it MAY be tomorrow. I was afraid it would run into another week since it was already Wednesday. So, I just started Abraxane (taxol). I feel like shit. Actually, feeling like shit is better than I have felt the last two days. I couldn't barely get out of bed, eat or take care of myself or my kitties (which mean the world to me). I know taxol was very hard on me the first time, but was promised it would be better because I am getting a lower dose weekly instead of dose-dense bi-weekly. I don't know if I can handle any more and it was only my first dose. I didn't even feel like it was my body - like I was just observing my body going through motions. And, my head was a fog, ears ringing, sore throat, no energy, no appetite, constipated, feet going numb, etc. I feel I am just starting to come around and I have to do this again in a couple of days? I am so depressed now as I thought I would be feeling better. I had no symptoms from the nodules. Did anyone else have such problems with Abraxane or is it just me? I still have residual neuropathy from the first go-around with taxol so am really scared now.
Aimee - let us know about the second opinion and the ablation. Thinking of you!
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Catwhisperer, I had DD AC/T with my initial dx. AC was fine, had nadir 3-4 days after infusion, just tired like the flu. The first dose of T was horrible for me. I did not have an allergy, but SE's were severe. I had SEVERE nerve pain in both legs from my waste down. I have a very high pain tolerance, but I was actually crying in tears for an entire weekend. It felt better to punch my legs than to have the shooting electrical impulses coursing through my legs.So they switched me to Taxotere for the last 3 treatments. It was better, but still no picnic. I got neuropathy pretty bad and some intestinal problems, pretty bad nadir with extreme tiredness. And don't even forget about what it did to my toenails!!
I'm sorry you have these se's. My MO is also talking about putting me in a trial with a new drug combined with taxol. When I mentioned my first experience (different MO), she said the same as you.... probably won't be as bad since it's not dose dense. My thinking is, if I can handle the pain, I want them to do whatever they think will prolong my life, so I can be with my girls until they reach adulthood. I can work through most pain, and the joy I get from being here for my kids outweighs almost any se's I may get.
Aimee, Let us know how you 2nd opinion goes.
Lori
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It is hard at times but I have great support from my family and friends. It is once in awhile I just sit there and cry. The thing that gets me out of bed everyday are my goals in life, my fiance and the fact that there are other people in this world who are suffering more than myself. And I never thought about taking vitamin B6 I will have to go get that. Thank you! I am very happy to have joined a support group.
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Beautiful tribute!
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Hi Aimeemac,
I'm new as well. You're doing the right getting a second opinion. The two times I was diagnosed I went to Boston mass for a second opinion. You should always do reach on your diagnosis to really see what's going on. Hang in there.
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I have been diagnosed with Triple negative Stage IV metastatic breast cancer in the bone, cancer of unknown primary (there is no cancer in my breasts). I was diagnosed in Dec. 2013. My pressing issue right now is the amount of pain I am experiencing after taking chemo which included Taxol, Gemzar and Zometa. I feel like my body is in a vice-grip and pain medication are hardly touching it. Is there anyone who has advice for me, something similar happening to them, any suggestions for pain management? I would greatly appreciate it. Thank you.
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Lori - I am glad to hear that I am not alone in that taxol has hit me so hard. I talked to the nurse today and she said the first dose is always the hardest and it should subside. Can I ask what is "nadir"? Haven't heard that before. My foggy head, fatigue and ringing ears still linger. I can hardly get anything done.
I hope your scans are clear!
Welcome mbherrmann - I haven't taken Gemzar or Zometa, but having a hell of a time with just taxol right now. Did you get a neulasta shot to bring up blood counts? What you describe sounds like the pain from that shot and taking Claritin can alleviate the pain.
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mbherrmann- I hope you call your doctor right away. There are different levels of pain management available that can be pursued.
The optimist in me hopes that the chemo is kicking your cancers butt and that maybe there is some swelling involved with the process. I'm visualizing that for you!!!
Cat- There are lots of clinical trials. Don't beat yourself up if this one didn't work out. Let you MO know to put you in the que for the next one.
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