HER2 Support Group Forums

HER2 Support Group Forums (https://her2support.org/vbulletin/index.php)
-   her2group (https://her2support.org/vbulletin/forumdisplay.php?f=28)
-   -   Local treatment in lungs? (https://her2support.org/vbulletin/showthread.php?t=65152)

Mtngrl 07-27-2016 01:35 PM

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?

Laurel 07-27-2016 03:13 PM

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!

MaineRottweilers 07-27-2016 05:16 PM

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!

Bunty 07-28-2016 06:18 AM

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

Vicky 07-28-2016 11:28 AM

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

DianaMK 07-28-2016 02:16 PM

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

Mtngrl 07-30-2016 03:26 PM

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.

waterdreamer 07-30-2016 06:21 PM

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

jra40 08-01-2016 12:23 PM

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

Carol Ann 08-01-2016 01:18 PM

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

Mtngrl 08-01-2016 02:29 PM

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.

sarah 08-04-2016 10:26 AM

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?

Mtngrl 08-04-2016 06:09 PM

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

Ceesun 08-06-2016 02:09 PM

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

Joan M 08-15-2016 05:37 AM

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

Mtngrl 08-16-2016 04:50 AM

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

Bunty 08-29-2016 05:59 PM

Re: Local treatment in lungs?
 
Hi Amy
just checking in to see how you fared at your August 22 appointment.
Cheers Marie

europa 09-02-2016 07:00 PM

Re: Local treatment in lungs?
 
Just wanted to send you good juju, prayers and light.

Mtngrl 09-03-2016 06:55 AM

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.

thinkpositive 09-03-2016 08:05 AM

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


All times are GMT -7. The time now is 02:28 PM.

Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021