Lymphatic Lungs

[Johnnag85]

I was diagnosed 1 year ago with Her2+++, Stage 3a; Multiple lumps-largest was 1.2cm;6 of 14 lymphnodes positive;Invasive ductal carcinoma; Had lumpectomy, AC for 4 cycles;Taxol and 6.5 months of weekly Herceptin, before heart weakened from 76% to 46% and I stopped Herceptin; 7wks radiation to original site. Started Tamoxifin in Jan, 06.

It has been 6 weeks since Herceptin has stopped when I developed daily back aches, shortness of breath,slurred speech, dizziness, blurry vision. Hands and feet swelling and falling asleep, fatigue, 15#wt gain.
Had Brain MRI-negative.
Had Bone Scan-negative;
Had Ab/Lung CT-found a dozen spots on both lungs.
Had PET scan- inconclusive due to nodule size.
Went to neurologist- everything ok
Had eye exam 6 wks ago, got new contacts- went back yesterday due to blurry vision, my prescription had changed in that 6 weeks- she doesnt know why- she said I have swelling behind my eyes.

My concern is of course the lungs , the blurry vision and slurred speech.

Please anyone with knowledge or personal experience please comment. I am 39, with 5 kids, the youngest age 2. I have basically become an advocate for organic foods, vitamins and vegi diet.

Open to any and all comments. Thank you all in advance.
Johnna

[mamacze]

Dear Johnna,

With all you have going on, and 5 wee ones to take care of, I am awestruck that you actually found the time to come to this beloved web site and type a coherent paragraph! Angel girl, you are in the middle of a health crisis and it seems like you don't know where to turn!

Your symptoms...blurred vision, slurred speech, spots on your lungs, dizziness, shortness of breath, swollen hands and feet...are all of concern. Do they plan to biopsy the spots on your lungs? What does your oncologist think? Do they think your shortness of breath, swollen hands and feet might be due to compromised heart function from Herceptin? You are on Tamoxifen; are you er/pr positive in addition to the Her2 neu +++? What nodule did the PET scan reveal?

In addition to being an advocate for a healthy diet, you need to be an advocate for YOU! I suggest you ask your surgeon about getting those lung spots biopsied ASAP! Ask when and if you can get back on Herceptin; and if it is contraindicated for you, ask if you are a candidate for Tykerb...ASAP! Ask your oncologist what he thinks is causing these symptoms....they are of concern; not to mention they interfere significantly with the quality of your life.!

Get some rest, hug your babies and get after your doctors. Stay strong and keep us posted.
Love Kim from CT

[Lolly]

Hi again Johanna! You should ask your onc about having anothe heart scan to see if your heart has recovered from the initial Herceptin regimen. This is often the case and patients can then resume Herceptin, usually with no problems and especially now that AC is far behind you; there's a coorelation between AC + Herceptin = heart damage.
If you do indeed have lung involvement, Herceptin could still be the backbone of your treatment. The other scan I would recommend you ask for if it's available in your area is a PET/CT fusion scan, now considered to be more accurate than either scan alone.
Most of all, chin up...we know this is a scary time but we're here with advice and experience.

<3 Lolly

[Johnnag85]

I appreciate your support, I have not been sure which way to go from here. My Med. Onc has said I need to wait for 2 months to get the PET scan again to see if the nodules- which are all less than 1cm,- most are a couple mm - get any bigger. ( Like I want to see that, before doing something about it. ) I will call and ask about the PET/CT Fusion Scan, I am not sure I know what that is, different from what I had before?

I am HER2 Positive 3.

I know the heart strength went down from Herceptin use, as soon as I went off, it went back up. The shortness of breath started with that. It is much better than it was, when I was on the Herceptin.

They think the hand numbness is from the Taxol- although it got worse as I used the Taxoifin and Herceptin. Swollen hands and feet due to Tamoxifin-so they say.

I had asked about the tykerb, but they said that was for post-menapausal?? Although, I have not had a period in a year, now. I dont know if they have any plans about putting me back on Herceptin- My Med Onc said it was not protocal for my age???

How do they do a lung biopsy?

What should I do if my Med Onc says he wont put me back on Herceptin since I stopped it? I remember having that discussion with him, beforehand.

Thanks in advance for all of your help!!

Sincerely-Johnna