The Hermit Club
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Everytime my hubby or I try to find out how much longer this is going to go on, we never get the same answers twice. This has been going on now for over a year. The only thing she says that is consistent is that from time to time I can have a break from treatment and even if the spots go away or get smaller according to her I'll be on this crap the rest of my life.
Everything I have read in accordance to Herception point to that one year of treatment is the optimal time period of treatment before it loses its effectiveness. The thing that ticks me off about this is that it she comes off as if its more important for her to keep me on treatment so that the insurance money keeps rolling in and that she isn't so concerned that this drug can damage my heart.
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MOmmy, I see you joined in June of this year . I was diagnosed June of this year and was told I would never be cured . I've finished 6 rounds of Adriamycin and Cytoxin , and am now taking Tamoxifen awaiting an appointment Friday with an oncological surgeon..I feel like I'm just waiting as well. I'm on FMLA. Right now but I'm still afraid of losing my job or not being able to do the same job again. I'm the one who pays the mortgage in our family, I pay most of the bills. It's scary. The good news for me was I responded well to treatment . I started with right breast plus one node, T spine, iiliac and a 3.9 x3.9 cm on my liver. After treatment everything has resolved except the liver spot but it too has been reduced to 1.9 cm. I am so thankful . I pray that the Surgeon at Emory can do an ablation. I had to have a MUGA scan prior to my treatment to see if my heart was strong enough for treatment. The thought that the treatment may have damaged my heart is scary. I'm getting an injection once a month to strengthen my bones and I'm not sure what the affects it will have on the rest of me. I pray you get answers to your questions. This is my first response on the board, sorry for being all over the place.
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Teresia, welcome.
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Welcome teresia
Mom i am sorry, that is the way it was for mr on chemo 4 ever with breaks if i wanted. I am metastatic, a mass on my chest wall, lymph nodes undrr my arm n in my chest, my bone in lots of places, in the lung n in the lining of the lungs.
Still on oxygen. Hang in there. Get a 2nd opinion if u want but figure out why u want one
Hugs
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Mommy- I am with the others here in terms of "what" part of your treatment did they consider not finished? I looked at your footnote and you seem to have been through a lot of treatment, but we all go through such different treatment plans, it is hard to know.
I have known several people in CT who had to get consults from Sloan Kettering in NYC. When you live in a smaller city, sometimes you have to go elsewhere for better information to the places that specialize in this day and day out. Many people where I live go to Houston or Phoenix to the cancer treatment centers there. I went to Scottsdale to have a very specialized radiation treatment for my care during my treatment.
You live close enough you could get down to Sloan assuming your husband can take the day off and go with you. Or if that is not do-able, get yourself over to the Yale New Haven community as they have some excellent medical care associated with that group. They may also be able to look at your lung films and suggest if you need any other tests to rule out mets.
I am sorry you are having such a hard time about this. Doctors often are not good at helping us to understand. This is a very frightening thing to hear. Let us know how else we can help?
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Hello Teresia, and welcome to Breastcancer.org! We're sorry for the circumstances that bring you here, but so glad that you found us.
The Mods
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Welcome Teresia- sorry you found yourself in this situation, but glad you are joining in this thread. We have many here in active treatment, some post and we try to help each other and are there on the good days and not so good day. Let us know how we can help you. Really nice caring group of ladies here.
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M0mmy, I agree – get a second opinion. I'm so thankful that I had a CT 3 years ago that found 2 lesions in the left lung, because if they hadn't found them then, and only found them now, they would have been very concerned that they were mets. As it is, they had a 3 year old CT to compare and see that they are unchanged. Talk about fortuitous! Why was I getting a CT scan 3 years ago? That's a story for another day.
Welcome, Teresia, we Hermies aren't very social irl (that's "in real life") but we like each other so we socialize here. Well, except for Jazzy. She's out there doing stuff, so we live vicariously through her. I tell people all my friends live in my computer. Sadly, that is the truth. But Hermies rock.
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Welcome Teresia.
Jazzy, I go to a branch of the Yale group and since I started treatment there, its been nothing but hassles off and on. Problems with the billing and so forth!
Hubby's gonna look at our insurance to see if they allow a second opinion.
Never had any of the lymph nodes tested when I had my surgery because BS didn't want to risk me possibly getting lymphademia.
The onco even came out several times and said she doesn't know if they are cancer or not because the size is too small to test. My hubby had raised the subject of why weren't they testing the spots if they were so concerned they might be cancer. My onco gives me weird looks every time I ask questions about my care and I tell her that I have been doing alot of research on my own about my situation, its like she wants me to stop trying to be informed.
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mommy, I am sorry to hear of your issues. Seems like docs just do not get it. progression scares me so much. There were also tiny spots on my liver, but too small to test......i only saw this after reading my scans myself, no one even mentioned it! So....I guess it could be cancer. I do not really want to know ...hopeful it will clear up with herceptin. I did not even tell DH. Always in the back of my mind is, what if it already has spread? Depressing.
..made PS consult appt. for November 10. Next chemo is Halloween, hahahaha. Kinda down now mentally, Got no energy to sugar coat my feelings....not being negative, just not expending myself on being cheery. Not sleeping well either, meh.
I am baking and cooking today, and hope to see a friend too, maybe it will cheer me a bit.
have a great Wednesday Hermies!
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Mommy- sorry the Yale folks have not taken good care of you. Get an apt at Sloan Kettering. I think going to the experts in your area will give you a better answer about what is going on.
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If the insurance won't allow a second opinion, the next CT Scan shows that these spots are gone, I'm telling the onco I want off for longer than a few months!! Tired of feeling like all that I am doing with my life is going to endless doctor appointments!
Next time I go I am going to raise the question about my having had bronchitis a few times when I was younger and about 8 yrs ago I had a bout of pneumonia. I'm thinking it could be scar tissue from that and not the spread of cancer, seeing that so far all signs of these spots are showing that they aren't growing and that they have become stable at this point according to the report from the hospital.
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lol
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Mommy- you are right that you could have something else there related to other chronic conditions in the past. Good to discuss your respiratory history with the docs.
Are you calling your insurance company about the second opinion? I have done them a couple time and they were always covered. But each carrier and plan is different.
I have seen adults around today in costumes. A mad hatter at the PO, a woman with fairy wings at the place I stopped for lunch. LOL!
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Clocks already gone back in Europe.............................
I am stress - ed. best part through a bottle of red wine tonight but its organic so thats ok.......lol
Feel totally unanchored.......sad churning and very wobbly...............
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Hi everyone, wrote a big post lost it damn.
Oh Lily try so hrd to just stay seated with u'r legs up, and don't forget the wine.
Welcom Teresia sorry it's for here but this is a great group of women. And well u won't be cured but remission is wonderful to hear.
MOmmy I don't get this whole node thing, how could they possible not test any of them--I mean I alay thought they at least biopsy or something I never asked but my BS told me he took 38 out and how many I guess didn't look good, I don't know how they can tell how many to take, but maybe he thought they all looked goo? I really don't understand any of this. Please don't think I'm trying to scare u but when u talk to u'r Dr. ask WHY he didn't take any out, it could be for a good reason.
Jazzy that's a great present u'r getting u'rself. I love him--good thinking.
Teka good u put some fun stuff on here too. I hope u'r doing OK.
OK I'm knocked ut here
I had more D this week and my poor SIL wanted me to go to the hospital because of my color, he sees a difference my color is bad enough without more criticism so I didn't go--he always means well LOL
OK everyone have a good nite and happy coffee morning.
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Lilli- I remember the time change in Europe is earlier. I went to Italy in 2009 and while we were there, they changed the clocks, then when I got home end of October, they changed in the US. Between those two and the coming and going through 7 time zones, I was kind of a mess that fall for awhile.
Enjoy the wine, sometimes it really takes the edge off a hard day......
Teka- always been a fan of Debra Messing, although I have not seen her new show yet.
Cami- is your D better?
Onco- our cranes come for the red and green chili.
Sally- how are you doing? I was thinking about you today.
Mags, Bippy, Monis, Maiden?
Finished my strategic planning class tonight. Got called for a meeting/interview with the city to discuss a project they have starting soon and looking for someone to help with. That is late tomorrow, and will find out if that may be a good fit for my next gig.
Time for bed ladies. Wishing you all a reasonable day tomorrow.
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Teka- I want this recliner!
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Hanging in there, Jazzy. Chemo #6 has been really hard on me. Thanks for asking.
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mad so sorry but its almost over
jazzy I want one too are you buying
mommy on understand why would they take notes and not checking me out are you sure what exactly did the doctor say about the nodes it makes no sense
I have no idea what's wrong with me I feel really good except for not being able to breathe no pain I feel good I'm just really emotional crying over the littlest things and maybe it's not little things don't know of course the twins are making fun of me cuz I'm crying
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Blondie- as someone who has lived with chronic asthma her whole life, I know how frightening it is to not be able to breathe. I am sorry you are not feeling well, and it is upsetting you so. Tell the twins to leave you alone. Hugs sister.
Cami- I wish I could by everyone a recliner. I think all the women here deserve one and more!
Mags- I am sorry you are having a rough time with this last one. I hope you are resting and taking good care of yourself. Thank god this part is over for you.
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Hubby was supposed to check on the insurance thing but work got nuts for him.
Cami, they didn't test any of the nodes for the worry that I might develop lymphdemia and the spots on the lungs were not much bigger than they are. There were a few that have disappeared already but they keep the fearmongering going about the ones that are still there. In addition to these spots, the cyst I had one one of my ovaries had resolved itself.
Hubby said he's taking the day off the next time I see my onco to get to the bottom of this crap. He's tired of them giving me the run around! He's good at catching her in changing her story. He's caught her several times when he's been able to go!
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Another reason I'm getting frustrated with the onco is because she keeps trying to imply because I was a Stage IV is why they are keeping me on it. I've done some looking into a Stage IV diagnosis and from what I gather it only means that it this crap has the potential to spread elsewhere fast, but they only found it in the left breast and nothing has shown up on any CT Scan that it is spreading!
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Nope
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yeah. Main tumor was about 7 cm but after neo-adjuvent therapy and surgery it pretty much was gone. Like i said, no evidence of it having spread has been found in any recent scans.
Was told that I would only be doing the therapy i'm on now for a year last year after surgery and it looks like its gonna be forever which is contrary to what I was told and the story always changes.
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Yep. Hubby works with women who were Stage IV and they are already done with their therapy. One woman had surgery before she had chemo and she's back to her normal life.
Yeah, I started about 6 months ago. The MO keeps trying to have me keep the port in too because I said if I ever got finished with treatment, I wanted it out. Makes it dang uncomfortable to sleep as where they put it is in below my right shoulder and that is the side I sleep on. The MO keeps using the post-surgical pathology report in saying I'm a Stage IV. BS says that I was a Stage IV at time of diagnosis but that a chance of reoccurance is very low.
As if dealing with this wasn't bad enough, it looks like I might have to take my cat to the vet soon. Hubby and I both think that something is wrong with him. He's drinking way too much water. I scoop the litterbox on a daily basis, but even with that I am having to change his litter twice a week. We have been using the same brand of litter and cat food that he's been on since he was a kitten (he'll be 8 yrs old in mid Dec.). This has got me really stumped and stressed!
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