TRIPLE POSITIVE GROUP
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astyanax66 - You are a busy lady! But I do think if you can mainly work at home, you will be OK. It's the commute that would do me in. Based on the diagnosis you listed, I'm guessing that you will only get Taxol which some call "chemo light." However, you will need a driver to chemo. My pre-chemo cocktail included benedryl and enough other goodies that I sometimes fell asleep in the chair. Then the steroids kick in and you will have a sleepless night.
Talk more to Tresjoli2 about the leave stuff. I'm sad about the rigidity of the policy.
Sorry I can't help you with the surgery stuff, LaughingGirl, as I only had a lumpectomy, but I love your poem and will try to be here for some of you newer ladies. Try not to get too far ahead of yourself. If you had cancer cells floating all over your body, you wouldn't be stage 2.
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I am newly diagnosed as Triple positive and starting my journey into breast cancer. This is beyond scary and overwhelming. I am a single mom who has to keep working to feed my child plus keep my health insurance. I have chemo scheduled to start in two weeks, will get the port in next Tuesday, and have a breast MRI scheduled for next Thursday. I am glad to read messages from ladies who have gone ahead of me and have worked and gotten through treatment. It gives me hope that maybe I can make it through too
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Laughing Gull
Irish Sweet
Hi. I was dx 3/2011. I had 6 /18 positive nodes. I'm now 7 years NED. I've posted a few pages back re. my treatments. I believe that healthy lifestyle choices can support people in their recovery from treatments but ultimately, I believe the treatments have got me this far. It is scarey but take it a step at a time and you'll get through it. Good luck
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blownaway--- Yay that's great about your mammo
Laughinggull, i had a BMX, i won't lie i cried for 2 days before. It was hard on me. But remember one thing those "boobies" that made you sick. That is the only way i made it past it. You can do it
How Taco- how ya been doing?
Irishsweet- welcome, sorry you have to join us. Ask questions we are here for you.
Its Friday ladies! Have a great day
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Hi Laughing Gull,
Well, I just want to affirm--surgery is scary. The whole putting your life in other people's hands--I'm a control freak, and that's been the worst part of this thus far. (Well, and the crazy scheduling, but I have a say there...) Forgive me if I don't understand, but are you not able to get a lumpectomy? (Is a mastectomy what is recommended for you? I wasn't clear on that). I will say--probably what you have been told before--be clear about letting your caregivers know if you are in pain. I found that there are so many options, from the standard dilaudid and Percocet, to nerve blocks while in OR, to short-term potent NSAIDS like Toradol. Or a combo thereof. With the freaking out about the opioid crisis, I was very scared about pain control. I have to say, the nurses were true advocates. They kept asking me if I wanted more medication! I was comfortable and didn't have to have anything additional, though it was nice to know it was there if needed. BUT--be honest about it, and take an advocate with you who will speak up for you.
I think mourning the loss of our breasts is also part of the process, and you have every right to grieve that. Hugs, and I'll be thinking positive thoughts for you!
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Hi, IrishSweet--as I was saying to Laughing Gull, if you are having pain after port placement, ask for some help. I was astonished to learn that they don't usually send you home with anything, so I *insisted*. It wasn't a problem. In fact, I split my doses in half and have only had to take them a couple of times. That was 48 hours ago, and today, I feel much better. Hang in there!
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Thanks, Taco--I am really hoping it's a regimen like yours (Taxol and Herceptin, or similar). Thankfully, I do have drivers.
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Hi, ElaineTherese,
Boy, you said it on dreary committees. I think I sit on committees that oversee committees, lol. My load is usually 2/2/2, but at least the academic dean over history tweaked summer so that I'm 2/1/3 (contract just stipulates 6 courses per year total). Beats me what's up with the VPAA. My other boss, the VPIT, has been incredibly compassionate. I don't know if it's because the VPAA is new and trying to toughen up on policies or what. Anyway, I'm just going to be direct with the MO and tell him that a crazy regimen spread over 6 months will ruin us, but that 3 months is do-able. And of course, there is the fallback of trying to get the 25/15 from home switched to 30/10 from home...Thanks!
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Thanks, Tresjoli2! I am going to see after a couple of treatments what my "bad days" seem to be. Knowing someone from HR is a huge help. And yep, you got it right...as long as classes are in session, I have to work a minimum of 16.5 hours....
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Blownaway, awesome that your mammo went well.
Vicky, loving your port presentation, a masterpiece for sure! Just think of how many thousands upon thousands of dollars of poison (clearing throat)....I mean drugs went through that contraption!
I have my CT abdomen, pelvis and chest today at 11:40. I have my bone scan today at 3:00. Believing in good results.
I took some time off of here because of a few things:
1) I am having days when I don't think about the unfortunate dx I received in 2017. Yes I still sometimes wake up and say "I HAD cancer" but, it doesn't consume every minute of my thoughts anymore. So for you newbies, it really does get better and there will be a day that you will be surprised when you realize that you haven't really thought of it that day. I took a break from here (BCO) as the more I was here....the more I thought of it. I am FOREVER grateful for the support, encouragement and love that I felt here. I wouldn't have survived without you guys. I needed your tips, your pats on the back, your friendship....so much I needed to hear your voices of positivity. I have PM'd people asking questions and I have received PM's of love when I needed it most. I won't mention names but some of you are a hoot (I have a twisted sense of humor) and I would laugh through the dark days. Laugh and snort...Vicky.
2) I started my free exercise program at the YMCA in the Livestrong program and I'm trying to get this body strengthened. I thought their Silver Sneakers programs was for old people....senior citizens - not me a spry 55 year old. As I was cringing (and trying to keep in synchronization with the others) the 70 year old man that I was sitting next to laughed and said "don't look at me"! Ha! I have lots and lots of fun.
3) I like positivity and when things go the opposite, I'm out. I need light. I thrive on being with those who uplift each other. My Triple Positive ladies, are ladies who because of the diagnosis, were suddenly in the dark BUT, we had ladies turn on their flashlights behind us to light the path. That is who we are.... We are light. It is our turn to light the path for the newbies, so let's shine on!
On that note here is something positive. I have hair, I have hair that I can spike!
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Moody, that's a lovely post about lighting the way.
LaughingGull, I hear every ounce of your fear. I too wondered how I managed to get to 3a when I was so vigilant. That's how cancer works; it can be very quick. As for the surgery fears...I was in a panic before surgery, as my oncologist didn't feel much change in the mass for the last four treatments. I thought the chemo didn't work after AC. I was terrified waiting for pathology. I think that fear was so great that it totally overshadowed the fear of having a surgery, of pain in recovery and of losing my breast. I had an excellent pathology. Do you feel the lump has gone down? Chances are good you've responded well and that margins will be clear. Cells can be roaming around all of us - that is what invasive cancer is - and that's why we get so much treatment. My only advice is to take one day at a time. Look at what is immediately in front of you. That's is the only way I could remotely cope through the surgery and follow up hurdle. It's the biggest passage in all this. You will do it. You really will. And this comes from someone who has to lie down on her doctor's floor because she was going to pass out when told her lump was not shrinking. So you can believe us and please know we hold you up in our very best light as Moody says.
Bartley, thank you so much for your post. It is very much appreciated.
IrishSweet, you walk a gruelling path. I'm so upset when I hear that a woman has to keep working - on her own - to raise her child. When international Women's Day came around, we are naturally directed toward women who don't have access to freedom and education around the world. I of course understand this. But now, reading so many stories here, I think of all the women (and some men) who need to persevere through treatment and fears and still put food on the table. I hope you have some supports around you?
I am at a resort right now and home in three days - home where it’s been minus 11. It’s not always easy to be around all these boobs, a place where women walk around in their bikinis. I feel self conscious and this is where I miss that breast. But then I remind myself that this had to happen, that I was never really a beach girl anyhow, and that I’m ok as I am and lucky to have my family
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Hi dear ladies,
Thank you very much for the support. Every comment is much much appreciated: antianax, shelabela, posey, bradley, taco1946...thanks! Very useful advice.
moodyblues: good luck with those scans!
I don't know if my surgery will be mastectomy or lumpectomy. The surgeon won't say until I complete chemo and get an MRI scan of both breasts. I have a tumor in my right breast and a lump under my arm.
The breast tumor is right behind the nipple, it was a ring or doughnut around the nipple with 3.5 cm diameter. It melted almost to the nipple diameter (1.5cm I would say) with the AC, and a bit more with the Taxotere/Herceptin/Perjeta cocktail. But since the original tumor was 3.5 cm and my breasts are small (cup
, I don't see how this is not a mastectomy but I may be wrong?The underarm/axillary tumor was 1.5cm and it melted to a string, again mostly with AC and a bit more with T/H/P
To irishsweet, I found the port placement uncomfortable for a couple of days and then I was fine. Very doable. They gave me acetaminophen with codeine I think. I found the chemo very doable. First I had 4 rounds of AC, which was very doable at the beginning and harder with each treatment but in total only two months and it was over fast, I learned to take the nausea meds religiously. Then four rounds of Taxotere/Herceptin/Perjeta, once every three weeks, which has been very doable for me. I took a one-week vacation on the beach after the second T/H/P, rested a lot there and I bounced back considerably. I worked full time through treatment and only took off the chemo days and two more days when I had a fever that sent me to the hospital. Working through treatment was a godsend because it made the weeks pass fast.
I didn't care much about losing my hair and didn't get a wig. Since I started chemo in November and will finish in March, I went with wool hats. That works for me because I wouldn't have had time to take care of a wig and I am comfy with colorful hats. I worked out lightly through all treatments so far and it helped a lot.
So I had no problem working through it all but I needed a support system because I was more tired than usual and had to go to bed early, so needed help with the kids. I stopped doing some household chores -less cooking, less tidying up, not getting up for breakfast with them. I think you need to build some support team either with family or friends.
Thanks again and have a nice weekend everybody. Enjoy Saint Patrick's Day, those of you who celebrate it. I am going for a pint with people from work right now.
Love and peace,
LaughingGull
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Moody - Are you getting the CT scan because its standard to have one after a certain length of time from treatment or is your doctor looking/suspecting something? I'm asking because I was told to have an abdominal/pelvic CT scan last week but canceled it when I found out it would cost $350 out of pocket. The mammo and ultrasound was $150 and I just couldnt afford to have both. I am almost 4 years out of treatment.
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Ha! Got you way beat Blownaway. My husband works for a small company and we have a HUGE deductible (ask me how much fun the last two years have been with that!). I saw my MO in January and told her I was having pain in my ribs and on the right side under my rib. So, she ordered a CT Scan for both my ribs and abdominal area. I have a $2600 bill for that little bit of fun all by itself. (My insurance company didn't pay any of my February port flush which clocked in at $211.) Sigh…
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Wow Tess! I think the doctors schedule these test any time we complain without thought of how the patient will pay. During treatment with Tamoxifen, I complained of headaches, bone pain to arms, legs, hands... they did a bone scan, brain scan and xrayed my hands, knowing full well that it was a Tamo s/e. When I had heart failure from the herceptin and was short of breath, they did a chest xray, heart catheterization, all day pulmonary testing. They knew it was a s/e of Herceptin. I drew the line when they wanted to do a nerve study for my neuropathy. WHY? Everybody knows what it was and that it was caused by taxotere... Im usually careful what I complain about these days but... I was describing my hotflashes, doc asked if I broke out in sweats...of course I do. So I'm assuming that she decided to test for liver mets since apparently it causes some sweating. Damned if I'm going to pay for all the machinery in her office. Sorry for the rant.
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blownaway, you have to pay for a mammo? I must have great ins. Haven't paid for one, will never have to pay for, (no longer have boobies) but was told that if i had kept them i would never pay for one.
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I was told that once you have B/C your mammograms are no longer considered screening mammography which is covered 100% but are now diagnostic mammograms and you have to bring in prior images for comparison and insurance no longer covers it.
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My insurance says once b/c is dxed mammos are no longer Screening mammos and 100% covered. They are now diagnostic mammos and not covered at 100%. Also you have to provide prior images for comparison.
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ElaineTherese, deni1661, cherry-sw, shelabela, and KimCee, thanks for the words of encouragement. Yes, I'm still dealing with a rotten post-surgery infection. As soon as the culture comes back with some analysis, I'll start a course of antibiotics and beat this demon back. It's a set back but I have to try really hard to stay positive.
It's ironic. At the start of treatment this time last year, I would bristle anytime anyone told me to stay positive. I have a radically different attitude now. Staying positive is critical. When my thinking goes sour, I try to rein it in and get beyond the anger and sense of hopelessness. Rather than raging against the medical community or big pharma, I have to consciously choose a better frame of mind. I was not ready to accept this a year ago. Now I realize that negative thoughts are detrimental and counter productive. It took me a long time to come to this realization.
The same goes for nutrition and exercise. I have to accept the conventional wisdom and keep moving forward. In a strange way, the cancer has beaten me down in a good way and forced me to make better choices. I'm no saint though. I still love cheeseburgersand will never give them up!
Hugs to all.
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You have turned that magical corner, Suburbs, of seeing and believing the positive. Congratulations.
My diagnostic mammograms are covered exactly like my screening ones were. I am in a HMO and have a small co-pay. I thought I was healthy before diagnosis and wanted to change to an 80 / 20 plan. DH talked me out of it. Getting the referrals and staying in network has been a challenge at times.
Vicky
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HapB, allow me to be crystal clear as I read your note and received the impression that my thoughts were construed in some way asdirected at you and your journey. Having knowledge is not, in my view, raging against the medical community. I have a very rare infection and have spent the last two weeks buried in medical journals learning about antibiotics. For me, not raging against the medical community means that I don't trash my doctor in a public forum. I'm keeping my counsel on my infection matter and trying to be understanding. A mistake was made. Actually, mistakes were made. It happens. I've been bandaged for 8 months. I have spent hundreds of dollars on medipore tape, sterile gauze, saline solution, and prescriptions, not to mention a hospital stay and a second surgery. I am still right where I started with the abscess. Same size, same infection. I'm facing months of treatment with multiple antibiotics and possibly a pic line in addition to my port, a hospital stay and another surgery. Please allow me to disavow you of the notion that my post was in any way meant to be an indictment of your opinions if such was the case. I am up to my elbows in alligators and do not have time or the inclination to disparage another cancer patient if again, that was the impression that I left.
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Help....
Hi everyone, I am super upset. I had my expanders removed Thursday and Gummy implants put in. They look awful, sort of the same as after my DMX. I didn't expect that. I am assuming this is not normal? I am also freaked out because my right side which had been radiated 18 years ago, the tissue is paper thin and if it opens, then implant comes out and I go flat on one side. I am lost. Anyone have anything similar happen to them? Can't shower for a week, she doesn't want tap water on that skin, gauze and ABD pads in sports bra. So uncomfortable AGAIN
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Suburbs,
I am very sorry to hear that your infection is still so troublesome. I hope your doctors find a solution to this problem soon. It sounds like a frustrating situation; I'm glad that you're trying to remain positive throughout this situation.
KimCee,
I haven't done reconstruction myself, but I have seen some threads in which BC patients have complained about their implants immediately after their exchange surgery. Some women have advised patience in these circumstances as it takes awhile for the implants to "settle." I don't know if that will be the case for you; you may want to go to the reconstruction threads for better advice. I feel yucky if I don't shower every day, so I can imagine how annoying this week will be for you!
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KimCee, first off stop looking. Everyone's looks awful for the first couple weeks.
I had the same reaction when I first looked. I remember Whippetmom writing me and saying how many times do I have to tell you girls not to look.
Just give it some time for the swelling, internal bruising, and that kind of stuff to settle down.
Vicky
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Thank you ladies,
Vicky, you made me laugh.
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HapB - I am eligible for Medicare July 1st and my thoughts are to have the CT scan done it hen. Right now am trying to decide about advantage plans vs traditional Medicare.
Does anyone have any thoughts as to which will pay for all these test best? I'm in Houston and w nt to the "best cancer center in the world" unti I quit my job, applied for disability, was awarded it based on all my chemo after effects and got on Obamacare which is not in network with that center. Had to change all doctors at that time and am about to do it again in July
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Blownaway, I have had the AARP Supplemental Policy (to Medicare) for 7 years. I In my experience it is terrific. Several of my friends have it too. I haven't had any problems except a coding mistake (physicians office mistake) and they are great at helping me resolve this. And, no I'm not a sales rep for this company! I just wanted to offer you this as a suggestion for when you are shopping/looking at these Hope this helps.
Liz
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Suburbs, you're in my prayers that this terrible infection ordeal you've been dealing with is resolved soon. My heart goes out to you for everything you are going through. Your positivity is a great testimony for how to get past these challenges. My shoulder repair has been quite challenging and I was told it could be 6-8 months before I might have full use of my arm. My recon is on the same side and I'm back to dealing with cording, scar tissue redeveloping and terrible pain. Having a positive attitude is the only way I can deal with this....complaining or being bitter won't get me anywhere. So I focus on what I can do. Hang in there, it will get better - I hope the new antibiotics do the trick. Hugs 😊
KimCee! Don't despair - I agree with everyone else, don't look for awhile and give your body time to heal. I was shocked the first time I looked at mine and questioned whether I made the right choice. Slowly I began to I look and feel better but it definitely takes some time. The uncomfortableness from the bandages/padding is short lived and not as bad as the expanders. Be gentle with yourself and take it easy. Sending hugs
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Blownaway. The CT'S are not because of any symptoms I am having, it is just protocol at my MO's office. I had one back when I was first diagnosed and now that I am through with chemo, it is time again. Many hospitals have programs that offer large discounts if you don't have insurance OR if your deductibles/out of pocket etc are really high. For example (my old facility where I worked) we had a program that IF you didn't have insurance offered an 80 percent discount. Many people went to that facility who had insurance with outrageous deductibles/OOP because they actually got a better deal that way. Ours was a non profit facility. Ask for a compassionate care rep or a social worker and see what they can do.
There were also programs specifically funded for BC...a social worker could tell you if there is one. (Nurse Navigator maybe?)
Don't skip any tests girl....as long as they are warranted....take them. Stinks to be a worker who has to do without services when there are those out there who will not work and are -able bodied and get their medical care for 3.00 or free.
Medicaid in SC has a program just for BC. I am not sure of their guidelines though. You may want to check and see if any of your services could be covered by them. Good luck!
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Suburbs. Wow, what a time you have been going through! I hope that very soon you will start to heal properly and get back to where you feel well again. ((hugs))
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