Update on my lung
 

As you know, I had radiation treatment to the cancer in the lower lobe of my right lung. My last session was October 3. At the time the radiation oncologist said if I get a scan for any other reason before December 3 or so, we should ignore the right lower lung. She also told me I might develop radiation pneumonitis, an inflammation of the lung that can look like pneumonia.

I've been on Kadcyla since June. First I tried using Tykerb with it, but that was far too toxic for me, so we dropped the Tykerb. For one reason or another--the pneumonia, the radiation therapy, seeing just the NP and not my oncologist for about the last 10 weeks--I've never had a scan to see what's going on with the Kadcyla. I'm tolerating it well, and I feel good.

Starting just over a week ago I noticed I was having a terrible time catching my breath on the slightest exertion. And the aching/diffuse pain I've felt off and on in the right side of my back is getting a bit more intense. Yesterday I saw my medical oncologist and she asked me about my breathing. I told her about shortness of breath on exertion. She listened to my lungs and didn't hear any breath sounds in the lower right lung. They tested my O2 saturation (which they don't routinely do), both resting and walking around. It was a little low, especially while I was walking. There was talk of ordering supplemental oxygen. Resting was 91. While walking it dipped down to 88.

I bought my own little pulse/ox gizmo ($40 at Walgreen's) and my results are the same. I got a high of 98 this morning while sitting up in bed drinking coffee. When I move around and do things it's around 87.

My medical oncologist said I should get a PET/CT next Friday and come see her the following Monday. It's probably a good idea to look at the other lung, my upper chest, and that one spine met, and see if there are any new lesions. But, if that's all OK (and even if it's not) I'm thinking I might need treatment for pneumonitis (steroids--yuck.) I do hate what steroids do to my mind and body, but of course I'm willing to be ravenously hungry and prone to "roid rage" in the interest of preventing permanent lung damage. I sent the radiation oncologist a heads up about my scan, and I will ask them to send her the report.

So stay tuned, folks. I still think the local treatment was a good idea and hope to get the other lung done if Kadcyla hasn't knocked it back. I think this is just a bump in the road. I hope so, anyway.

Re: Update on my lung
 

I hope so too, Amy! Thanks for letting us know how you are doing.

Carol Ann

Re: Update on my lung
 

Nothing is ever simple, is it? I hope you can get improvement in your lung function and that your scans show positive effects from the Kadcyla. A little Roid Rage is a small price to pay if the radiation has done its job.
Best wishes.... Pam

Re: Update on my lung
 

Hi Amy,

I really hope that the radiation and T-DM1 work for you and get rid of your lung mets. I’m sorry that you may have developed radiation pneumonitis though, which means taking steroids again. It never seems to end does it!

I too have been experiencing chest congestion and shortness of breath for about 5 weeks now. This week, it turned into a cough. I’ve mentioned this to my nurse practitioner twice now, and she told me that it could be a side-effect from the treatment, or caused by the cancer, or a cold (which I doubt since it’s lasted for over a month). I’m going to mention it to my doctor when I see her tomorrow, and see if they can look into this. I’m not sure what you mean when you say that they tested your O2 saturation, but I’m wondering if they should do the same thing for me.

I hope you feel better soon.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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 ultrasound and bone scan 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 on, one off 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 cancerous, 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 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!

Re: Update on my lung
 

Hey, Amy, I'm glad you checked in. I was hoping to hear you say it was smooth sailing but that's how it is with us. My fingers are crossed that Kadcyla is still your ticket since you seem to tolerate it well. Steroids...yuck but they will make a remarkable difference and you'll feel even better when you are off them. Keep us posted.

Re: Update on my lung
 

The radiation oncologist called me in today, asked me some questions, had the nurse walk me around and test my O2 sat and heart rate, and said it's probably radiation pneumonitis as opposed to, say, actual pneumonia or, heaven forfend, the cancer roaring back. On that subject I said to her, "From a lay person's point of view, it seems highly unlikely we'd have a big-ass tumor there one month after 12 rounds of radiation." She smiled.

What's got me a little honked off is I was the one to contact my radiation oncologist. My medical oncologist didn't mention it, or didn't think of it, I don't think she coordinated with radiation oncology. Recall that this same medical onc who waited until I got pneumonia, and then had a recurrence, before she suggested local treatment. She also drilled me on whether I had "really" had pneumonia. I was treated for it at "HUP," the Hospital of the University of Pennsylvania. I think they know what they're doing.

So I'm on Prednisone. The rad onc said people often feel much better in as little as 24 hours. I can hardly wait. I've been huffing and puffing, with my heart pounding, on the simplest little bit of exertion. I have also developed a wracking, nonproductive cough (on top of the coughing I do all the time because of GERD--acid reflux--of all things.) And I'm tired.

Yeah, Tracy, smooth sailing would have been nice. But I'll settle for staying alive and being able to do most of the things I want to do, for awhile longer, anyway.

Oh, and the PET/CT is this Friday afternoon. I'll get the results Monday.

Amy

Re: Update on my lung
 

Hi Amy,

I am sorry things have been so difficult for you, but I’m glad that you are now on Prednisone, and I hope it helps as quickly as the doctor says it will. Keep us posted regarding your PET/CT results. I hope you get some good news.

Tiffany

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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 ultrasound and bone scan 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 on, one off 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 cancerous, 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 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!

Re: Update on my lung
 

I hate that we have to settle, I want us to catch some breaks but yes, we are alive and kicking so what's to complain about, right? WRONG! I think you need to have some serious words with that MO of yours, I think she's written you off. I'm NOT impressed. Amy, I know it's hard, but find someone who will impress us. There must be someone there. She could have spared you a ton of suffering at the very least with just a little action on her part. She doesn't need to be a cheerleader but for pete's sake she could at least be a leader.

I hope that pred is helping you to breath a little easier and quit the coughing. You need some rest. Oh! and the schedule your PET on a FRIDAY afternoon?! OH MY FREAKIN WORD. Seriously, is there possibly another way to stack in some stress? I hope you have something stronger than Calgon to get you through the weekend. Amy, I'm sorry. You deserve better than this.

Re: Update on my lung
 

Hi Amy,

Thanks for the update. I hope your PET scan results show nothing serious. The anxiety of the waiting/anticipation is very stressful but at least you'll have concrete answers soon.

I hope the prednisone is helping your breathing issues.
Please keep us posted.

all the best
caya

Re: Update on my lung
 

I've had 4 doses of Prednisone now and I feel SO MUCH better. At the rate my overall health was declining, I swear I might be hospitalized by now if I hadn't started treatment. Evidently the rad onc knew it was urgent, because she went to extra effort to get me in to be seen.

Yeah, Tracy, I think I need someone whose view of "palliative care" is more proactive (though I think alleviating pain and suffering fits just about any definition of "palliative.") I want to stay as well as possible, not just keep ricocheting from illness to illness. None of my problems have yet been directly from the cancer itself. It's a complex condition to manage, and my onc seems pretty balkanized.

Re: Update on my lung
 

Amy,

So glad to read that you are feeling so much better. Nice to see that your rad oncologist went the extra mile for you. Wish that was always the case but sadly it isn't.

Hope you continue to feel better!

Take care,
Brenda

Re: Update on my lung
 

Amy, sending good thoughts your way. How are you feeling? -Flori

Re: Update on my lung
 

I feel pretty good. I still get short of breath but it's not as severe. Scan results tomorrow.

I just re-read my most recent scan report (from May) and notice there was a lot of new activity just in my right lung. Everything else, though "noisier" than on the January scan, was stable, in a sense.

I'm going to ask my med onc if she remembered I had 12 rounds of radiation to that lung and if she considered the possibility it's a radiation side effect. I'm losing confidence in her.

Re: Update on my lung
 

Hi Amy,

I’m so glad to hear that you are feeling better thanks to the Prednisone. I’m glad your radiation oncologist is taking you serious, however, I’m sorry to hear that you are losing confidence in your medical oncologist. Are you able to find a new oncologist, or are you stuck with the one assigned to you? I lost confidence in my team after my recurrence, due to the fact that they all kept telling me that the lumps on my scar line were “scar-tissue”, and refused to send me to scans after chemo because “it worked”. It’s hard in Ontario, where I live, to get assigned a new medical oncologist once you have one, so I’m stuck with my current medical team. If my radiation oncologist hadn’t been on vacation, I would never have seen another radiation oncologist, and I still may not know that my cancer had recurred. He was the only doctor who picked up on the fact that my “scar-tissue” may not be scar-tissue after all. At least now, I’m on all of my doctors’ radars, and they are paying closer attention to me. That being said, I have become much more involved in my treatment, and when I want something done, I insist. I’ve come to realize that no one will advocate for me but me, and I’m not afraid of appearing pushy or being annoying. This is your life and your health, and you need to fight for what you need.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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 ultrasound and bone scan 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 on, one off 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 cancerous, 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 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!

Re: Update on my lung
 

I'm holding my breath for you today. Hoping, wishing and praying it goes well. I'm relieved you are feeling better.

Re: Update on my lung
 

Standing by, Amy.

Carol Ann

Re: Update on my lung
 

Hi Amy, keeping my eye on your posts and praying that you are doing well.

Re: Update on my lung
 

Hi everybody,

Good news and bad news on the scan. The part of my right lung that was treated with radiation is markedly improved, as is one of the lesions in the left lung. But there are a bunch of new lung spots of various sizes, and my one bone met is getting "more angry" and destructive. So I'm going to start Eribulin on Monday. Hopefully that'll knock back the mets.

The odd thing is my med onc doesn't think the lung inflammation is radiation pneumonitis. She thinks it's cancer symptoms, and says Prednisone would make me feel better in that case too. I'm not sure it makes any difference if we get it fixed. But she seems to need to be right for no particular reason.

Re: Update on my lung
 

I am not a fan of good news, bad news. I was holding my breath for great news. Amy, I am sorry for the uncertainty. Get your new treatment plan, process it, then go get a second opinion and if you need to, a third. After that you can make choices that YOU feel comfortable and confident about.

When you start the Erubilin, do you stay on the TDM1?
XOXO T

Yeah, doctors... they always want to be right.

Re: Update on my lung
 

Hi Amy,

I’m glad to hear that the radiation worked, but sad to hear that there are new spots on your lungs and that your bone met is acting up! I agree with Tracey that you should get a second opinion from another oncologist, if possible, as you seem to have lost confidence in your oncologist. I have never heard of Eribulin before, but I hope it works for you. Keep us posted.

Tiffany


¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
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!