Update on my lung

[Kkmom]

Hi Amy,
I am with the rest of the group-get a second opinion if you need to. I got a second opinion when I first found out I had cancer and I thank my lucky stars each time when I think about the situation and if I had not sought a second opinion. My outcome could have been so different. Be brave and bossy!!! Pam

[Mtngrl]

You're the world's greatest support group! Thank you so much for your kindness, caring, and great suggestions.

I'm on a lower dose of Prednisone now, and my lung continues to improve. My energy level is good. I'm even sleeping fairly well.

I asked to be assigned to a new medical oncologist. I'm not sure when I'll get to meet her, but hopefully we'll have a more functional therapeutic alliance. I'll be getting Herceptin and Eribulin--for how long I don't know.

One thing I want to raise with the new doc is the possibility of biopsying the bone met. I've been on Kadcyla twice, and both times it did a truly crappy job of controlling the cancer in that lesion. I'm wondering if maybe it's not HER2+. I did have one of those "liquid biopsies," and it showed HER2 amplification. But maybe not in that one site?

I've reread the 11/11 scan report, and tabulated the significant findings. It's really another one of my "mixed" scans. Given a choice, radiologists will always say "progression" as opposed to "stable" or "mixed." They really can't get in any trouble for being overly pessimistic. But for those of us trying to live with the disease, and those working to help us find a way to do so, it's important to keep things in perspective. The scan doesn't show anything that's an immediate threat to my lung function. It shows significant improvement in some respects. The size of the lesions and the amount of FDG uptake is kind of "normal" for me. I'd prefer not to have cancer in my lungs, but it's been there for 3 1/2 years and I'm still alive and kicking. Not NED but not dying--not even all that unwell right now.

I ordered a new wig--a sassy asymmetrical pixie cut with long bangs, in about the same auburn color I used to have back when I was coloring my hair. I have a bunch of other wigs, scarves, and hats. I knit, so I can make more. I'm going to just keep on keepin' on.

[Pamelamary]

Sounds like a lot of good news and I am so glad you are seeing a new oncologist - that relationship is so important! Bone biopsies are very unpleasant, but there seems to be increasing opinion that we should keep up to date with the status of our mets.
I too am not NED, but currently living well. From the sounds of your wig, etc, you are doing a lot more than just keeping' on.
Best wishes..... Pam

[Paula O]

I hope the new medical oncologist is a great match for you, Amy. Here's to fresh eyes and perspective and great care!

It sounds like you've got a lot of positive things in your favor in the midst of the hard stuff.

We're rootin' for ya!

Paula

[Mtngrl]

Thanks, Paula, Pam, Tracy, and all.

I tried to get a second opinion from a different cancer center in town. The people there did not seem very well informed. Somehow they were unable, with a couple of months' notice, to get together all the information they thought they needed for the consultation. The admin person was asking me for copies of reports I've never seen and don't have access to. They didn't ask me for things I could have gotten, such as images of all my scans, or reports from biopsies. The intake person didn't seem to know anything at all about metastatic breast cancer. She was perplexed that I haven't had breast surgery or radiation to my breast, and when I told her about my lung mets she said, "Oh, you have lung cancer too?" It did not inspire confidence.

I just want to say I am feeling MUCH better. I am coughing a whole lot less. I still get out of breath on exertion, but it's not causing tachycardia or leaving me gasping for air. It's more like the old familiar, "Boy, I'm out of shape" feeling. That I can work with. I'm hungry all the time, but that's actually kind of welcome after a long stretch of not feeling much like eating.

I've been making a beautiful red juice in my juicer every morning, with carrot, beet, lemon, apple, and greens (currently chard). Then I turn that into a smoothie with Greek yogurt, frozen berries, grated turmeric and ginger, and some sour cherry juice concentrate. Lots of dishes to wash, but it's delicious, gives me a big boost of energy, and is loaded with antioxidants and anti-inflammatories. I've never thought of food as equivalent to medicine, but it certainly couldn't hurt.

Amy

[Carol Ann]

That cancer center sounds like they do not know, as my aunt used to say, poop from shinola! (Sub in a word that starts with s for the poop!)

I am so glad you are feeling better in the midst of dealing with all of this, YAY!! Your juice smoothie sounds really good!

Carol Ann

[thinkpositive]

Amy,

Gosh, I was really hoping for good news exclusively. It just seems that you have had your share of "mixed results". Lets hope that this new treatment does the trick and your quality of life and spirit remains good.

Sending prayers and healing energy your way.

Take care,
Brenda

[TiffanyS]

I am glad that you’re feeling better Amy, and that your energy level is improving. I’m also glad that you are getting a new oncologist, and I hope you like her better than your old one. It sounds like you have a treatment plan in place, and I really hope it works for you. Keep us posted.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene.
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-3 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!

[Ceesun]

Hang in there Amy! I am getting a clean up radiation on my right lung even though the chemo cleared things up. I have had seven treatments and twenty one to go. I have that achy feeling sort of under rib cage in back--also tired. I had walking pneumonia earlier this fall..not cancer related but it set me back. I am still wheezing a little and one doctor prescribed steroids to feel better but my radiation oncologist suggested I hold off taking them. We will ge through this....Cathy

[Mtngrl]

Thank you, Cathy! You're my trailblazer, exemplar, guide, and cheerleader. Your remarkable story, and your resilience, inspire me.

This episode has reminded me how important the "human" side of cancer care is. We take our cues about how we're doing from the people around us and their words, body language, and stories. The medical oncologist I had in Boston took the time to educate me about how to interpret scan reports, how to think strategically about treatment, and how to respond to "mixed" reports. Since most of mine have been mixed, that was critically important.

Here's what I think: as much as we'd all love to get into a permanent remission and live to be 115, that's not a likely outcome for most of us. So then what? We know from the clinical trials that "progression free survival" is not a valid proxy for overall survival. Sure, it's nice to be NED for a time, and one's body probably functions better (depending on what is being done medically to maintain that status) than if there were some cancer lighting up, but it is ultimately meaningless. Someone who's never been NED might end up living longer and better than someone who had a run of "remission" followed by recurrence. You never know.

That being the case, it's not necessary to stamp out all evidence of disease. If the cost of doing so in terms of quality of life and overall health is too high, it might be a bad idea. Last winter I was on Abraxane, Herceptin, and Perjeta. I felt ill more often than not. I kept getting urinary tract infections. For several nights after each infusion I had to take opiod pain killers to be able to sleep, because of severe joint and muscle pain. The Abraxane did a good job on most of the detectable cancer in my body, but I felt like it was also sucking the life out of me.

At this point I would dearly love to be breathing well again. I'm hoping once the pneumonitis clears up I will have that. I could be wrong, but I think I have had no new mets since the first time I was on Kadcyla. I think that's fantastic. I'm concerned about that bone met. After years of just sitting there not doing much except take up glucose on PET scans, it's now destroying bone. I want to get that fixed. I hope Eribulin is the answer. If not, maybe surgery or radiation? I'll stay on top of it.

What I don't want is to succumb to some opportunistic infection instead of the cancer itself. I will do my part to rest well, eat well, exercise, laugh, pray, learn, create, and love. My family, chosen and given, will help keep me well in the only ways over which I have any control and in the only way that ultimately matters anyway. Healing and wholeness have to be something other than vibrant, perfect, uncomplicated physical health, because hardly anybody has that, and ultimately none of us do.

[thinkpositive]

Amy,

What a beautiful post. I love reading your posts. They really get me thinking about life, health, and living from a different prospective. Not many people that I have met have the ability to convey their messages in such a thought provoking manner as you do. I sincerely hope you start breathing well again.

Take care,
Brenda

[Carol Ann]

Amy, you are amazing!! I have learned so much from you and I think of you often ... I hope your breathing improves and soon!

Carol Ann

[MaineRottweilers]

What a novel perspective. Amy, you live with such grace. I wish to emulate that. You are my example and I will do my best to follow.

That bone met. Has it been biopsied lately? I know at one time you were on Arimidex. Are you still on any sort of AI? They say those bone mets are often HR driven. I know mine was.

XO T

[Mtngrl]

Tracy--I got the bone met while on Arimidex! When I was first diagnosed I was 10% ER positive. Later I had a lung biopsy that showed no ER receptors. So I haven't been on any AIs since 2012. I agree, maybe the bone met should be biopsied. That hasn't been offered but I plan to bring it up.

Amy

[MaineRottweilers]

If it's acting up, I think I would ask about it. If it is HR+, you can try a different AI.

[Ceesun]

Amy, You are so generous in spirit and way too kind. Love and good wishes to you...I think we all do the best we can with what we've got, so to speak. I have my disappointments and discouragements too...but try to proceed in the spirit of love and respect for our sisters and brothers especially here on her2. You know, I have lost four friends in the past year, three to cancer, all three diagnosed after me. Not trying to be morbid, but we never, ever know what is around the corner...so I try to move forward as best as I can...even if its babysteps!!! xo to all, Cathy

[Mtngrl]

I asked my new onc about biopsying the bone met. She said they are hard to do and tend to be inconclusive. She offered to biopsy something near it. I said, "Isn't that a bit like the drunk looking for his car keys under the street light because the light's better there, even though he lost them someplace else?" She smiled.

The plan is to see if Eribulin zaps it. It was "resolved" in 2015 but didn't stay that way. Maybe radiation to finish it off this time.

Amy

[MaineRottweilers]

Radiation definitely helped with pain. My L2 is always active on bone scan and has uptake on PET but it's considered inactive. Since it was zapped, it feels better and hasn't changed on scans. That's a win in my book. I still have pain but nothing like it was.

[Mtngrl]

Tracy--

I've never had any pain with mine. Ironic--they'd do radiation palliatively if there were pain.

With the pneumonitis I'm a little less gung-ho about radiation. But the L-4 is not near the lung (if I have my anatomy right, and I very well may not), so maybe there's no need to worry about that.

One day at a time!

Amy

[MaineRottweilers]

Indeed, one day at a time. Tackle things as they come along. L4 is way down there, no worries about your lung but your gut might get angry, mine did. Glad you aren't painful, that's a very good thing.