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Helen
05-30-2006, 12:14 PM
Hello everyone! I am feeling scared because of the result of my CT scan from last week. It was noted that there was an increased soft tissue fullness in the superior mediatinum prevascular space area. This was never mentioned in my previous scans. My liver mets is still stable. I am waiting for a PET scan appointment. My onc told me he does not like to see this type of results.
What am I doing wrong? I have changed my diet completely and it looks like I am having progression even with Herceptin weekly. I haven't seen much of the mediastinum area mentioned on this board. Is this the same as lung mets? Will this respond to chemo? My onc mentioned navelbine and gemzar but he said he will check my films with the radiologist further. Does anyone have an advice to offer? I will meet with my onc tomorrow.
My last chemo was between 7/2005 - 12/2005 with Taxotere/ Carboplatin once every 3 weeks and weekly Herceptin.
Thanks.

Helen

Cathya
05-30-2006, 01:26 PM
Helen;

What about a lapatinib clinical trial? Perhaps you need the double punch of herceptin and lapatinib to knock out the her2 and her1. I do not think you are doing anything wrong. This is about finding the right treatment at this point. I am sure someone has heard of this.....I am sorry that I have not.

Cathy

Cathya
05-30-2006, 01:31 PM
Helen;

AlaskaAngel posted this trial which also might be of interest.

Clinical Trial for PTEN-deficient Mets progressing on trastuzumab-based therapy
Phase I-II Study of Trastuzumab in Combination With RAD001 in Patients With HER-2 Overexpressing, PTEN-Deficient Metastatic Breast Cancer Progressing on Trastuzumab-Based Therapy
This study is currently recruiting patients.
Verified by M.D. Anderson Cancer Center May 2006

http://www.clinicaltrials.gov/ct/gu...317720?order=13 (http://www.clinicaltrials.gov/ct/gui/show/NCT00317720?order=13)

Sheila
05-31-2006, 09:07 PM
Helen
I am wondering if they might be visualizing mediastinal nodes, which like the ones in the neck and axilla seem to flare up on some from the breast cancer....if so, still very treatable when found early...I hope it is nothing for your sake...this disease is so unpredictable....sending prayers and good thoughts your way.

Helen
06-01-2006, 09:44 AM
Thank you Cathya and Sheila. It looks like mediastinal nodes is not very common. I have also heard from Patty Z. I just hope and pray that my PET scan tomorrow is going to be okay. I will keep you all posted.

Cathya,
I did inquire about the Lapatinib trails on phase 3 at UCSF. I am waiting for a response.

Thanks.
Helen

Helen
06-08-2006, 11:13 AM
I got my PET scan result yesterday and I am very disappointed and scared. The mediastinal area lit up as well as the old stable lesion on the liver (1.8 mm). What surprised me was another area that lit up on my liver that was not detected on the CT scan. My onc suggested that I go back to chemo and he will give me Navelbine weekly along with Herceptin. He said he will look into the EAP for Tykerb for me. Why would an area on my liver lit up and yet it's not on the CT scan? I also have a cold when I had my PET scan. Will the cold give false positives? I don't have any symptoms on the mediastinal area.
I have read so many post on navelbine side effects but I would appreciate any advice and feedback at this time. I am so glad I have this site to turn to. You all give me hope, strength and courage just by reading everyone's post.
Thank you.

Helen

Cathya
06-08-2006, 12:18 PM
Helen;

I am so sorry to hear of your results. I would assume that the CT missed something caught by the PET as I understand that a CT doesn't identify anything smaller than .3 mm. That is good news as any activity must be small if I am correct. I'm sorry I know nothing of the treatment but many others will. All the best and keep us informed of your progress. You onc shouldn't have any difficulty getting the lapatinib for you and I would think that it, coupled with herceptin and a chemo should be a one, two, three knockout punch!!

Cathy

Barbara H.
06-08-2006, 02:29 PM
Hi Helen,
I am currently on Navelbine, 2 weeks on and one week off. I am doing OK with it. After my first infusion I had pretty bad mouth sores for a few days and fatigue. As I have continued to receive it my white and red blood cells have declined. I have received procrit for red blood cell counts, but so far I just had my treatment declined one time for low absolute neutrophil counts, which are the white blood cells that fight infection. My onclogist would prefer that my white counts rebound on their own at this time. Although I feel tired and achy during the first part of the week after I receive infusion, I am able enough to make it to my job, which is teaching 3rd grade. I was also given nausea meds and have not needed them. I hope this information helps. You really won't know how you will react until you receive this drug, but you will probably do reasonably well with it. Most women on this site feel that it is tolerated well. Good luck.
Barbara H.

lu ann
06-08-2006, 10:10 PM
Dear Helen,

I was dx. with mets to medistynime and spine two years ago. My local onc. would not do rad. tx. to med., but to spine only. I went to Cancer Treatment Centers of America in Zion, Ill for a second opinion and they were able to do both rad. tx. to med. and spine. I had a large mass which shrunk and has not given me any problems since. I had shortness of breath and pleural effusion but no mass in lungs. I am currently on xeloda for a large lymph node that popped up on my last ct. scan. I also am on zometa for the bone mets. I havn't had heceptin since Dec.

Love and Blessings, Lu Ann