TRIPLE POSITIVE GROUP

astyanax66

Thanks, Taco--I am really hoping it's a regimen like yours (Taxol and Herceptin, or similar). Thankfully, I do have drivers.

astyanax66

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!

astyanax66

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....

moodyblues

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!

PoseyGirl

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

LaughingGull

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

Blownaway

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.

Tess111

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…

Blownaway

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.

shelabela

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.

Blownaway

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.

Blownaway

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.

Suburbs

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.

coachvicky

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

Suburbs

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.

KimCee

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

ElaineTherese

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!

coachvicky

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

KimCee

Thank you ladies,

Vicky, you made me laugh.

Blownaway

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

Cowgirl13

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

deni1661

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

moodyblues

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!

moodyblues

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))

Tess111

Suburbs - sending you cyberhugs and hoping this gets resolved very soon. I admire how you are handling this.

Blownaway (and everybody) - As of March 1, I am on Medicare. My CT Scans revealed no issues with the offending ribs and pain beneath (So, yay, there), but it showed another issue which required me to see my GYN and to have an ultrasound. My own GYN was AWOL but her partner, whom works in another city, got me in right away and even had her ultrasound tech squeeze me in. The long and short of it was I needed a D & C and a biopsy. I asked if it could wait until March and she said yes. So that is what I did. (My radiologist gave me a hard time until I explained about the high deductible and going on Medicare March 1 - then he was cool with it, also.)

So right now, I am waiting for the results of the biopsy. Fingers crossed. I also having my mammogram due at the end of the month. I am trying to be calm about all of this but I have been downing 86% organic free dark chocolate like it was some kind of miracle cure.

As for Medicare plans, I went with a Supplemental as opposed to an Advantage Plan. The supplemental plans allow you to choose whichever doctors and hospitals you want, as long as they accept Medicare. I have an older friend who was healthy when she chose her high out of pocket Advantage Plan. (Not all Advantage Plans have high out of pocket, so you will need to check if you are interested in an Advantage Plan) Then she learned she had breast cancer, and now she is stuck with the plan and the doctors that are in network.

Hap is definitely right about Plan F. I actually dithered between Plan F and Plan G - Plan G has all the same coverage except there is a yearly Part B deductible ($183.00 this year). The plans were $21.00 a month different with the company I chose, so in the end, I went with Plan G. My reasoning was since they were getting rid of Plan F, I was worried that my company would not have incentive to keep the plan competitive in its pricing. On the other hand, if Medicare increases their Part B deductible I am hostage to that. So...

Cowgirl, I chose the same company as you. I had heard positive things. I guess I will see.

Taco1946

My recommendation is also for a regular medicare plan rather than advantage. And a Plan F supplement (whichever company you go with). Mine is with the American Medical Association. Haven't paid a cent for my cancer treatment. I have been pleased with my AARP (United Health Care) for a drug plan. I think they also have a good supplement as does BC/BS. My friend, Anne, was diagnosed with Stage 4 after selecting an advantage plan, but was able to find help from several foundations for her co-pays which were significant.

Jstarling

Hope this infection clears up very soon. Good luck, we are all thinking of you

shelabela

Just saying I HATE INSURANCE COMPANIES anymore. Lol such a pain

LaughingGull

Hi wise ladies

Just checking in before going to bed, reading the weekend messages. Suburbs, that infection sounds terrible. I hope you get better and start seeing a way to this getting resolved. Don't even know what to say.

The insurance problems, sorry ladies. My coverage seems great so far. Still I am drowning in all these explanations of astronomical hospital bills they send me...they cause me stress, since you sign that you are financially responsible for anything your insurance doesn't cover...this surely has to be illegal. It drives me nuts.

Kimcee sorry about your implant troubles. Vicky's comment also made me laugh. Damn. I wish we could just spare the one boob or both and still look terrific and not go through reconstruction and implants at all. I am scared sh*tless about the surgery and haven't talked to plastic surgeon yet. Since I have small boobs I sometimes fantasize about not getting reconstruction. Then I realize I will probably look too asymmetric and would end up going around with some prosthetic thing inside my bra which sounds like a constant inconvenience; better had something permanent to make up the lost volume. But then I have this nightmare of looking and seeing this awful-looking job. Gee i am soooo sad to lose my boob -or boobs since I dont know what the plan is for me.

Thank you ladies for being there. Hope everybody enjoyed their weekend.

Happy Monday to all!

LaughingGull

PoseyGirl

hey Hapb, I’ve posted about this Dr. a couple times here. I find her to be intelligent with extensive experience. What do you think?

I’m so sorry to hear about the various struggles here. KimCee, I hope you see a difference in a few days - it’s so stressful to have something redone on your body and then wait to see final results. I’ve had cosmetic surgery, so I feel for you.

Suburbs, I cannot believe this struggle. Why will recovery take so long?? I’m sorry.

Reading all the complexity over insurance, etc, that you deal with in the US blows me away. While I know that as Americans, you will see the most advanced treatments first, I also think it’s just wrong that any person should struggle financially to receive treatment. This is my Canadianism coming in here. Our healthcare system in Ontario is in crisis, but Thank God I could access treatment without the stress of money.