Starting Chemo March 2015

TerryMarie

Thank you Katy, I wish the same for you!

molly1976

Congrats, Terry!

TerryMarie

Thank you Molly : )

Pretty happy to be done, got hugs all around from the nurses , was emotional.

Meme117

Happy Saturday! Its been a few weeks but I've been reading.

Congrats Terry! And best wishes on moving forward!!

Sorry E here's to getting out of the funk, maybe a glass of wine or two and a funny movie - my big fat Greek wedding 2 is out. I've felt the same and wondered if its the Tamox?

When should one be tested for the menopause levels? Looks like the gyn and mo have different standards. Neither of mine have recommended I be tested.

I'm having a dexascan on Monday, then cat scan next week and then final herceptin the following week. Can't believe I'm almost finished, very emotional. Being honest I'm terrified it will come back. I try not to think about it but... I'm trying to address my anxiety and went to a reiki session with crystal healing. Anyone do this? I didn't know what to expect and during the session thought maybe I'm crazy this is a bit hippie and out there. But I loved it! I felt so relaxed and calm and at peace. I scheduled another session. I'm also listening to Wayne Dyer CDs, anyone else like him?

Re: June 10th meetup - I'd love to join the group need to research flights and rental cars. Where to fly in?

TerryMarie

Maryellen, I share your fear of it returning, its in the back of my mind all the time. I haven't tried any crystals but I have started to take Turmeric every single day, I initially started because I read that it might help my arthritis and I know my anti inflams I take are very hard on my stomach.

After researching the benefits of taking Turmeric I read that it may help in getting rid of cancer cells or stop them from forming all together. I am aware that it's a long shot but I know it has powerful anti inflam properties and has various benefits. That is all I've started to do along with eating properly. Exercise is next, I just need to build up my stamina now.

Congrats on being almost finished! Time to focus on a healthy happy life.

DavisD

Hi ladies!  I'm just climbing out of the rabbit hole and haven't been reading for a couple weeks. Thanks to one of my long distance sisters for keeping me a float when I needed it It was comforting to hear of your own personal struggles and I wish I could bring myself here when I'm in the midst..Its just hard for me to reach out.  My mantra is "just show up" and then I coach myself to act like someone who feels happy and healthy. I used to believe that was being phony but it really does help to some degree. Just another way to "think positive" I guess..

I finally got a call my Bilateral breast mri has been approved just when I almost forgot about it.  I appreciate the Prolia discussion. I was diagnosed w/osteoporosiat 38, went on fosomax and increased weight bearing exercise, over the years improved to osteopenia but last test showed it worsening again 2 yrs ago. I'm concerned about getting the bone density done now more than the mri...don't want to break any bones, ughh.. Calling on Monday thanks to you ladies. Always a wealth of information and comfort.

Doing some "normal" things this weekend with friends, improv comedy show last night and dinner and a movie with some old friends in the city tonight.  Happy Saturday to you all and special warm thoughts going out to Eileen and Amber

DavisD

I am also interested in the June 10 meetup. Where would I fly into?

eheinrich

For Arrowhead you should fly into Los Angeles or Burbank. I would like to go up on the Friday and can fit people in my car. If anyone wants to come earlier or stay later we can work out anything you like. It's far to come for 2 days. I will be staying a few extra days. I'm so excited!

I'm trying to pull myself out of my funk. Today the rest of my furniture from Alan's is being delivered - including my Twilight Zone pinball machine!! (Crap - I need to make room in the garage for that....). I'm going to clean, arrange furniture and plant some trees. I'm also selling the house I've been renting out so I can pay off my current house and stop running budget numbers through my head. DD I like your "just show up" mantra. Sometimes showing up is 90% of the battle. I'm sure no one at work knows I'm struggling.

Tomorrow Shana, my youngest, hits town for a hot second. She leaves Tuesday early am. Just stopping by for mom and dad hugs.

DavisD

I've never even been to CA. It sounds like so much fun!  I'm flying to AL and TN in April to see my sister and cousin. I'm going to seriously look into this gathering when I return.

I was with a group of friends last night and it dawned on me how little I've traveled. I was the only one in the group who has never been outside the country. My tendency is to just feel sorry for myself but I'm going to make plans instead. Any recommendations on your favorite out of country destinations?

Eileen-how far are you from Burbank or LA?

Trvler

Just popping in to say hello. We are home and I have to help my ADD daughter get caught up on homework for the next two days. (after doing homework during the trip, too). There is just no way to reduce the stress that this causes me. She just needs to grow up and mature. If I left her alone, she would just flunk. She wouldn't even do the work at all.

I am not sure if I can make it to LA. I just don't know what to do with my kids.

Eileen: I know you are having a hard time with the changes. I wish there was something I could say to make you feel better. I think of you all the time.

Diane: It's nice to 'see' you when you do pop in. I understand not coming here all the time. I tell myself I shouldn't. Then I do.

pboi

Popping in to say hi too. We are in homework mode here too, last day of spring break for kids today. Didn't go anywhere this year, just some local fun as we're slowly packing/cleaning our house in prep for a move later this year.

Would love to join you in LA this year but kids still in school, and we are actually headed there at the end of June to spend time with the in-laws.

Still struggling with moving forward with life, it's hard for me, the fears, the worry. Trying to let it go...trying. I too am trying not to come here all the time, but do.

PB

eheinrich

DD I am close to both. The lake is anywhere from 1.5-3 hour depending on the time of day/traffic.

I was just applying for Obamacare. Turns out I need a human & not just the internet. It is telling me I'm not eligible since open enrollment has closed. I need a human to help me convince the website that I am losing my insurance due to divorce. They were also asking if I'm offered coverage through my job - which I was and declined. I said no - they wanted specifics on what was offered & I don't have that info. I hope having not taken work insurance doesn't make me ineligible for the $100 a month subsidy. Work changes plans due to whatever is cheaper - changed plans for this year. With our medical histories consistency is so important. What do you think the odds are of getting this worked out?

Trvler

Eileen: This is a longshot but do you have satellite radio? There is a guy on Doctor Radio who does a thing called Healthcare Connect and he just answers questions about insurance. I have learned a ton from him. The show is on Thursday mornings here.

eheinrich

Allison ~ I do. I'll check it out. I have it in my car so if the timing works I'll listen.

SpecialK

eheinrich - losing coverage due to divorce is considered a qualifying event under the Affordable Care Act, and qualifies you to enroll outside of the normal enrollment period - but you may have to be able to provide proof. My daughter had a qualifying event as well, which was aging out of our insurance due to turning 27, and she was able to enroll outside the period - no problems. Turning down employer based coverage may mean that you forfeit the subsidy though. As long as your employer based plan meets the ACA dictates and is not prohibitively expensive, you are supposed to enroll in it rather than an ACA plan. I believe you can chose an ACA plan over an employer based plan but not receive the subsidy.

Trvler

Eileen, They also replay it on Friday mornings. If I were you, I would call or email the guy. The chances that he answers a question that will help you quickly are remote. But he does take calls and email questions. Maybe you could find his website to see the best way?

Lol. NM. I just saw K answered your question pretty well.

Lovemylab

Just dropping in to say hi. Not posting much but trying to keep up reading. 3 more Herceptins for me then out with the port. Cannot wait. Thinking warm thoughts of you all.

Maureen

Trvler

I can't believe all the ladies finishing up Herceptin. That's so great! Congrats to all of you for making it.

KBeee

I was away all weekend and worked a ton last week; trying to catch up on reading everything! I hope all are doing well. Congrats to all finishing Herceptin!

I had my MO appointment originally scheduled for late this month moved to last Thursday because of a rash. It's a rash I would never normally go to MO about, but I was on a clinical trial in 2013 fro a vaccine, and so I have to report any new rashes to MO. He did not know what it is, so I'll go to dermatologist tomorrow. It looks to me like a vasculitis, which is a little concerning as to what caused it. We'll see what derm has to say. My labs were good (finally). MO is trying to get my insurance to approve Prolia. I have not heard back from him. He also sent a text to my BS about setting up breast MRI and I have not heard back from them either. If I don't hear from anyone by Wednesday, I'll send both a message through the portal. I'll feel better when this month of appointments is done. All of my routing stuff seems to fall in April. By the end of the month, I will have seen MO, BS, PS, Gyn, derm, and dentist! I had been putting off PS appointment, but MO told me that my radiated side felt horribly uncomfortable (it is) and wanted me to see PS soon. Since they radiated with implant in place, it has become hard as a rock and feels like a TE all over again. We'll see how this crazy month goes!!!!!

pboi

Karen...hope you can get your Prolia approved, as I know you wanted to be on it. I'm on Zometa and maybe wanting to switch to Prolia. I'm curious was there any discussion with your MO about Zometa vs. Prolia? I think my MO is going with Zometa because it's an older drug so they know a little more about it? And perhaps cost of Prolia a factor. But I want the most effective drug for staving of osteoporosis and recurrence prevention, I'd pay for it if I needed to!

Good luck with all your appointments this month!

PB

ksusan

Good luck, Karen. I'm glad your labs were better. Mine were, too, so maybe this will be true for more of us in March/April as well.

KBeee

http://www.breastcancer.org/research-news/prolia-r...

PB, He recommended the Prolia based on the study I linked to above. I had it on my "list" to ask him about, but he actually brought it up before I had the chance to ask. He said that since my cancer has a history of not behaving and he knows I prefer to be aggressive, he thought this was something to consider. He told be some pros and cons, and asked me to read up on it and think about it; in the meantime, they'd see if insurance would approve it, and we'd make a decision. Here's a study that compares the two drugs:

http://www.breastcancer.org/research-news/20120821

I am hoping to hear from him soon. I had a long discussion with DH about it. Basically, I had decided when first diagnosed to hit this cancer with everything I could while the kids are still in school. Once the kids are adults, I would still be aggressive, but would consider long term effects as important as cancer-killing/preventing. For now, I want to do everything I can to live long enough to get to that point.For now, that means taking Prolia. In 6 years, if faced with a similar choice, I may choose otherwise. Crossing fingers I'm here to make those choices! I am grateful that my MO is so on top of this for me. How have you done on the Zometa? Any problems?

pboi

Karen...thanks for the articles. I have an appointment with my MO tomorrow, and we will for sure be discussing this. I feel much the same as you do. I have 3 kids (10, 10, and 7) and will do anything it takes to try to keep cancer away. Will you let us know what your MO says when he reports back to you? I had Zometa in February and am not due until August. My first Zometa infusion was rough, chills, muscle aches, fatigue, flu-like for several days. I've heard the first infusion is the worst and that subsequent infusions would be better, but we'll have to see I guess. I'm also concerned and wondering how long I should be on it? The effects of Zometa appear to be cumulative, and the risk of ONJ rises the longer you are on it, so something else to think about...

PB

KBeee

I'll let you know when I hear something. I think Prolia is generally better tolerated. I hope so. The Zometa sounds rough.

SpecialK

Keep in mind that the risk of ONJ with bone building drugs - both Zometa and Prolia (in the form of Xgeva - same drug, denosumab) - is much greater in those with diagnosed bone mets. Those patients receive larger dose/more frequent administration, so the risk goes up. In those without mets who are using these drugs for bone strengthening the risk is less. I have been on Prolia for three years, no issues.

DavisD

Karen-I had similar issues w/the implant/radiated side feeling hard and irritated. Gotten a little better but always kind of "there." Keep us posted and thanks for the articles. I see my primary care doctor for a follow up on Wed and I'm going to ask about an order for a bone density scan and Prolia. It's almost 2 years since last and I had problems then. More worried about broken bones than cancer. I guess because I don't have young kids. It would be so different if my kids were little. I kind of feel they have the tools they need to be ok now. It does seem like the medical appointments never end.

Nice to "see" you Maureen!

Allison-I have ADD and my son does as well. Not the hyperactivity component but distractibility big time. We went through a very difficult time. He always rushed to get through work, hated homework and made numerous mistakes in what he did complete. After years of working with him on coping methods and tons of frustration, he is now 27 and very successful. We've both learned to cope after years of underachieving. I guess I'm saying there's light at the end of the tunnel so hang on! You're a good mom and it will pay off some day

PB-thinking of you too!

Eileen-Good luck finding "a person" to help you. I haven't tried to help anyone find a plan but I understand it can be time consuming. I think twice about ever trying to retire when I think about having to change plans with a history of cancer. I don't know about the meetup. My brother in Rochester is feeling sad I'm going to see my sister this month. I haven't seen him in several years so that may take priority. I wish money was no issue, I have plenty of leave because I never take off.

Trvler

Thanks, Diane. It helps a lot to know that others have made it through this.

Guys, I need some advice. I have pains in my breasts. I know it could be nerve regeneration, radiation, fat necrosis, blah, blah, blah. But the thing that is freaking me out is that 90% of the time, it is in the cancer breast. Which again, was the one with radiation. My MO does tumor markers and 'how I feel' to monitor. Should I get another opinion? Insist on some type of scan? I don't see her for another 2 months? Help!

phoebe58

hi Trvler -- just catching up over breakfast. I don't have that pain [yet] but we are in similar circumstances. Might it be BECAUSE of rads [the only side that got any thing different - both had surgery] now tightening the musculature and tissue more -- I have heard that can happen and takes time to start and it's apparently not uncommon. Mine are achy and tight with the odd ping, but think that is leftover surgery with a bit of the tightness more apparent on the rad side [boob also a bit lifted]. Don't know what to suggest re scans etc, sorry I can feel your worry (((hugs))).

eheinrich

I got approved for insurance through ACA. But with my 31k a year income I don't qualify for subsidies. But at least I get coverage.

Trvler

Wow, 31k doesn't qualify?