Local treatment in lungs?
 

Hi all. I've been walking around with lung mets for quite some time. I'm sure systemic treatment must be doing at least some good, because I'm still here, and still functioning well.

Due to a series of blows to my immune system in June, I came down with pneumonia in my right lung. I was in the ER for 28 hours getting IV antibiotics. Then I was sent away with a 7 day supply of oral antibiotics. I took them all, felt fine, and went on with my life. Twelve days later I noticed some milder versions of the same pneumonia symptoms. A chest x-ray confirmed it had returned (or had never left) and I got another 2 weeks of the same two oral antibiotics.

My oncologist ordered a CT scan of my chest. It shows that cancer in the right lower lobe might have contributed to the pneumonia developing, and might be making it hard to clear the infection. So she referred me to a radiation oncologist.

I have an appointment for August 22. I learned that side effects of radiation treatment to the lungs include shortness of breath, coughing, loss of appetite, and acid reflux. I have most of these conditions right now, so I'm wondering about that.

On the other hand, I've also been wondering for a couple of years if I should get some sort of local treatment in my lungs. They are the site of the largest mets I have, and they seem to be the most resistant to systemic treatment.

Anybody have any input here? Suggestions? Experiences to share? Precautions? Other ideas for local treatment?

Re: Local treatment in lungs?
 

Amy,

I have nothing to contribute except to say that I will pray for you and for your medical team! It does sound like an aggressive step against those pesky and persistent lung mets. I would check into cardio-toxicity related to radiation of the lungs. I hope it zaps those lung mets into oblivion!

Re: Local treatment in lungs?
 

Amy, you know I don't have any advice for you but I'll be your cheering squad. Squash those mets!

Re: Local treatment in lungs?
 

Hi Amy

sorry to hear that you've been having to deal with pneumonia on top of everything else.....

My first mets journey was three lung tumours nearly 9 years ago. Two of them disappeared with chemo, but the largest one never disappeared - it did shrink a couple of times, and then was inactive for quite some time. But last year it started to grow again, and was active as seen on a PET. So I underwent sterotactic body radiation therapy - SBRT - a 4 dimensional targeted radiation. I had about six sessions. And it seems to have worked, although it's difficult to ascertain on scans as there is quite a lot of scar tissue from the radiation around the site. But what I can report is that my tumour markers have been very low (CA15-3) dropped to 9, and stable ever since the SBRT.

It's painless, although depending on the sophistication of the machine, it can be a little strange. I went through a very detailed planning session where you have a planners and physicists meticulously marking up the location of the tumour or tumours with a CT scan (they can do more than one at a time), . I had a special body mold made so that each time I had treatment you were placed in the exact position. You also get a couple of small tattoos to help with the tracking. The strangest thing is that I had to have my nose clamped shut and breathe through a snorkel each time. This is so the breathing patterns are monitored for the radiation to be administered to the correct location. I understand that with the more sophisticated machines, this is not necessary.

Sometimes it only takes one session of SBRT to achieve the result, but because the rays were going near where I had originally had a lot of radiation on my left breast, they did less intensity over more sessions.

I've had no side effects at all, except for a little radiation burn, but I dealt with that with aloe vera plant gel. There is the risk of pneumonitis, but they monitor this (and I didn't get it).

Other than Herceptin, I haven't had any other systemic treatment now for over three years. I had liver resection 2 years ago (SBRT wasn't suitable for this, although we gave it a shot but in planning the tumour was too close to the bowel), and then the lung SBRT. I would recommend definitely looking into this, or some other local treatment.

Keep in touch as to how your appointment goes on August 22, and you know here at these boards this is where you can get great information - it's helped me a lot over the years!

Best wishes
Marie

Re: Local treatment in lungs?
 

Hi Amy,

I had 3 spots in my lower left lung treated with SBRT- I had 5 sessions over a week. I didn't really notice any side effects from the treatment. I had quite a dry cough before treatment, afterwards it slowly diminished. I didn't experience shortness of breath or increased acid reflux either. My scans do now look more "cloudy" in that area, but we do see that as scarring. I am currently doing Perjeta and Herceptin, on break from weekly Taxol for several months now. Scans coming soon.

I continue to wish you well, Amy!

With love and blessings~
Vicky

Re: Local treatment in lungs?
 

Hi Amy!
Would a lung resection be an option for you? I had one on the left lung and it got rid of the cancer there. There is a spot on my right lung that has been stable for a long time. Wishing you well. Diana

Re: Local treatment in lungs?
 

Thanks everybody! I appreciate knowing I'm among friends--whether or not you've got experiences to share.

My oncologist isn't too keen on resection, for some reason. I do have some scattered small mets in my upper lungs and chest, so maybe that has something to do with it.

I feel better prepared to meet the radiation oncologist now.

Re: Local treatment in lungs?
 

Hi Amy,

I too have mets in my right lung and am considering SBRT. I am currently doing WBRT as I discovered that I have around 40 brain mets, none bigger than 1cm. I just finished 5 days of radiation and have another 10 to go. I get breaks on weekends. I have a slight headache, but the biggest factor is the fatigue. I am left feeling useless, with my head in my hands. It is so hard to do anything.
I am on Abraxane and Herceptin for the lung and liver mets. Once I am done dealing with the WBRT, I will be looking at SBRT for the lung (maybe liver) mets.

Sending healing wishes
Fern

Re: Local treatment in lungs?
 

I'm so sorry to read your struggles Amy and Fern. You two have been long time warriors, keep up the fight - we are all praying for you two!

Jessica

Re: Local treatment in lungs?
 

Hi Amy and Fern,

I just wanted to chime in with Jessica that I am praying for you both!

Carol Ann

Re: Local treatment in lungs?
 

You wonderful HER-2 buddies sure know how to be a support group! Thanks for the well-wishes and prayers--and sharing experiences.

Fern--best wishes to you. I hope the brain mets are all gone soon and you get great results in your lungs.

Re: Local treatment in lungs?
 

There is a pneumonia vaccine that needs renewing every 5 years I believe, could this help once you are well again?

Re: Local treatment in lungs?
 

Sarah,

I do plan to get the pneumonia vaccines, whether or not insurance covers them (I'm under 65). My brilliant science-trained daughter told me you get Prevnar, then wait at least 8 weeks and get Pneumovax. If you do Pneumovax first you have to wait a year to get Prevnar, and it doesn't work as well.

Amy

Re: Local treatment in lungs?
 

Fern, Praying for you. Amy I have been dealing with lung mets for ten years. Had cyberknife but it did not maintain ....doing chemo now with one more to go and then the plan is cyberknife again to right lung and chest nodes. Have had a good deal of improvement with current regimen. Can give more info if you want or need it. Oh happy day, just attended 45 year class reunion. Cathy

Re: Local treatment in lungs?
 

I've had mixed results with local procedures.

First, a lung wedge resection in April 2007 for a solitary met. However, the cancer recurred in the same area of the lung a year later. To treat it, I had RFA and there's been no cancer in the lung since.

(A brain met in 2008 was treated standard-of-care: craniotomy + 5 dosages of targeted IMRT, or intensity modulated radiotherapy).

Best wishes to you,
Joan

Re: Local treatment in lungs?
 

Thanks, Joan, for chiming in. It's great to hear from you, and it's awesome to be reminded of your success story.

Amy

Re: Local treatment in lungs?
 

Hi Amy
just checking in to see how you fared at your August 22 appointment.
Cheers Marie

Re: Local treatment in lungs?
 

Just wanted to send you good juju, prayers and light.

Re: Local treatment in lungs?
 

Hello, friends.

The appointment went well, and I'm scheduled to start treatment this coming Tuesday.

Here's the interesting part: They had started off thinking they'd just do a little radiation to shrink the tumor and get it out of the way of the infected area temporarily. But after talking to me awhile the resident said, "You look great. You don't look like you have cancer. I'll have to run this by my boss, but I think we should do a longer course of treatment and try to get rid of that tumor." I smiled and said that was music to my ears. For two years I've been wondering about getting local treatment in my lungs. The resident explained why it's hard to eradicate lung tumors with just chemo. That fits with my experience. Everywhere else in my body the cancer is being controlled well with medicine, but my lungs keep slowly getting worse.

The attending physician approved the plan. I'll have 6 treatments and take a break for about 10 days. Then I'll come back, they'll do imaging again, and I'll get another 6 treatments. By the time the second round starts the cancer should be smaller and easier to distinguish from the infected area. (I'm also hoping the pneumonia will be cleared up by then.)

I've been back on antibiotics since last Friday. They haven't knocked the infection back very much. It seems they're just holding it at bay. It's subtle. I'm a little more tired than usual. I have a little pain. I'm coughing a bit. I get winded more easily. I don't have a fever and I'm not acutely ill. I realize that could all be from the lung tumor, but I'm hoping that, whatever the cause, the new treatment plus Kadcyla will solve it.

If everything goes well in the right lung I'll get radiation treatment for the left lung as well. I am hopeful this will buy me a significant amount of quality time.

Re: Local treatment in lungs?
 

Amy,

That sounds like an excellent plan! I'm glad the resident suggested it and the attending approved it. I realize there is a lot to treating cancer but it does seem to make logical sense since you are doing well with the exception of the lung issues. I sincerely hope that this plan works for you! Keep us posted.

Take care,
Brenda

Re: Local treatment in lungs?
 

Amy,
I haven't posted anything on this site for a LONG time but do check in once in a while. You have been an inspiration to me from when I was first diagnosed in January 2014. I am glad you have a plan and will be praying for you.

Take care,
Kathy

Re: Local treatment in lungs?
 

Thinking of you Amy and sending healing thoughts your way. Hope everything continues to improve and that the new treatment is successful.

Re: Local treatment in lungs?
 

Hi Amy

I hope all went well on your first treatment day. Would love to hear how you feel. What kind of radiation are you having? I'm interested in the 6 treatments, break and then 6 more treatments. Hope your infection is clearing up.
Best wishes
Marie

Re: Local treatment in lungs?
 

Hey, Amy!

Just peeking in to cheer you on. You can do it! I hope things are going well for you. <Rah! Rah! Kick it out!>
XOOO
T

Re: Local treatment in lungs?
 

Amy,

Praying for success in treating your lung mets.

Joan

Re: Local treatment in lungs?
 

Hi Amy, I see that you finished radiation on October 3, and was wondering if the radiation worked for you and helped with your lung mets?

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, 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. 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 scare 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: Local treatment in lungs?
 

Thank you to all my wonderful Her2 sisters. I completed the 15 rounds of WBR and my latest MRI is clear (happy dance). My liver mets are stable. My right lung and now left too, just can't seem to get over this cancer. I may look at lung radiation. Has anyone looked at Proton Therapy? Amy - how are your lungs faring?

Hugs
Fern

Re: Local treatment in lungs?
 

Hello Fern and Tiffany.

It's too early to assess the results of the radiation to my right lung. I feel pretty good--breathing OK, sleeping well, etc. It takes two months for the post-radiation healing to occur. And then a fair number of people get radiation-induced pneumonitis 2 or 3 months out. They treat that with steroids.

If all goes well, I'll get the left lung done next.

I asked what kind of radiation it was. They had an answer, but I didn't write it down. It was all very precise and carefully planned and targeted.

Tiffany, I'm glad your brain MRI was clear. I know that's a huge relief. Fern, it's good to hear from you. I'm glad the brain mets are gone. I don't know what photon therapy is.

Best wishes, everyone.

Re: Local treatment in lungs?
 

Keep us posted Amy. I hope the radiation works for you!

Yes, I’m very happy that the brain MRI was clear! Hoping for more good news in the future!


¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, 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. 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 scare 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!