Any advice, thoughts,opinions please; time running out

[wennydog]

My name is Donna and my partner's name is Pat. Pat was Dx with DCIS of the Rt breast in 2001. The surgeon who had special traing in breast cancer care said no onc was needed. She had a failed lumpectomy and the Rt mastectomy with an implant. No follow up treatment.

In 2003 Pat developed a cough lasting over 2 months. Finally PC doc suggested a bronch. What do you know, breast Ca in the lungs. Next bilateral thoracotomies for lung biopsies. Her2 pos ER- PR-. Onc began her on 6 months of navelbene, carboplat,herceptin.

2005 chest wall reoccurance, 6 more months of same chemo. 30 rads.
rads burnt chest wall---> infection---> IV antibiotics----> cdiff---> hospital for weeks.

June '06 enlarged lymph nodes on neck, then tumor on chest wall. 20 rads.

Fall '06 Pat begins with lymphedema Rt arm, shoulder and axilla with tumors under arm,cancer visible on mastectomy scar and epidermal spread down implant.I am located in Birmingham, Alabama but willing to go anywhere.

Jan '07 scans show more CA. Now Taxotere and Herceptin. Inflammation in the lungs and pneumonia stopped chemo after 2 treatments. Left vocal cord becomes paralyzed from CA to nerve, severe lymphedema. Next epirubicin, cytoxan and 5 FU. Pat becomes so weak she is no longer able to walk. High dose steriods given and gastric paresis developes and remains even after thre steroids are tapered down. Two rounds of this chemo have turned her into an invalid. She cannot eat or walk.They started TPN for a few days but now talking about a j tube. Now the onc says she may try docirubicin.

I hate this disease. Where did our lives go. I am presently writing this from her hospital room tonight. I feel myself begging, praying, for another remission and relief of her pain. Anyone with any ideas about trials or drugs for compassionate use please give input. Thank you for taking the time to read this. I am located in Birmingham Alabama, but willing to go anywhere.

[Lani]

Dr. Mark Pegram shows pictures at conferences of patients with extensive metastatic breast cancer with chest wall involvement and even fungating lesions which have responded to the combination of herceptin plus avastin (he has a clinical trial going) He is leaving/has left (his last conference lecture showed a slide with him already being at the Miami Cancer Center) UCLA for Miami. I don't know if his clinical trial will go with him, but look at the NCI clinical trial site.

Others here can give you reports of personal experience on other herceptin/tykerb/chemo combinations.

Good luck!

Dear Donna,

I'm so sorry. Just recently I read about a trial where three drugs were used together, one of which was herceptin, and there was some success with Stage IV cancers using the three-drug combination. One of them may have been the drug that Lani recommended, Avastin. I don't remember the other drug (but I do remember it was manufactured by a different drug company from the one that manufactures herceptin). I will try to find the names tonight, and if I find them, I will post again.

I think I also remember something about the use of a drug approved for diabetes that was used along with herceptin. My memory is terrible lately, but I will try to look through what I have on my computer to see if I can find anything. I may be mixing the two together.

Lani, do you remember the diabetes one? I think you may have posted this information.

I am so very very sorry for you both.

[hutchibk]

If you are in Birmingham, you are not terribly far from some fantastic cancer hospitals... Mayo in Jacksonville, FL, Moffitt in Tampa, FL, and MD Anderson in Houston, TX.

Best wishes that you and Pat can find the best possible care!

Donna--It was an article posted by Lani--you can find full article by searching threads under her name.

The three drugs were: Gefitinib (marketed as Iressa),
herceptin, and another drug called pertuzumab.

Conclusion: Combined treatment with gefitinib, trastuzumab, and pertuzumab to block signals from all HER homo- and heterodimers inhibited growth of HER2-overexpressing xenografts statistically significantly better than single agents and dual combinations.

A clinical study using drug combinations in newly diagnosed patients with HER-2 positive breast cancer will start soon under the direction of physicians at BCM's Breast Center, said Osborne.

This is a real long shot, but it might help knowing about this.

[Sheila]

Donna
First of all I am shocked that a surgeon would make the call on needing an oncologist to review the case and pathology reports and see what was best. Many surgeons are fooled by DCIS, that once gone it is cured, but we have a few on this site who have gone from DCIS to Stage IV...I would get another opinion as soon as possible at Moffitt, MD Anderson....somewhere. Avastin is a new drug given with Herceptin that blocks the blood supply to the tumors, and is showing great outcomes...or why not Tykerb/Xeloda......
Please seek another opinion!

[Believe51]

My girls are right on the money. If you are willing to go anywhere, I do suggest some of the same places they recommend. MD Anderson has my husband's records on file. You can read the depressing profile below. I am so sorry to hear your grief, I am so sorry we all have to meet here, but thank God we have somewhere to go. It is tough from your seat too as a caregiver and a person whom loves Pat. I can also say that Dana Farber in Boston may be able to help, but listen to the other posts and investigate the possibilities available. These girls are great and the advice they give should be reviewed, they have been there, done that. Sorry I can not help you anymore, but I needed to let you know we shall be praying for both of you and sending hugs your way. And Sweetheart, I too wonder where our lives went. Totally sucks!!>>Waiting For A Miracle>>Believe51

[Believe51]

My girls are right on the money, as they usually are, they have been there, done that. MD Anderson(Texas) & Dana Farber Cancer Institute(Boston) both have my husband's records, you can read his depressing bio below. Our doctor happens to be seperate from these two places of interest.

I am so sorry to hear you pain and desperation, I am so sorry we all have to meet here, but thank God we have somewhere to go. It is a tough job being a caregiver to someone you love more than anything. Please read the rest of the posts as they come in and explore your options at the end. Of course I wish I could give you better advice, but with time these 'Great Warriors of Mine' will shine through as always, keep heart Donna.

My husband and myself will be praying for Pat and yourself, we will send out positive vibes, and most certainly will send out giant hugs for you both. Keep the faith and stay strong for your dear love Pat, needs you now more than ever. May peace fill your home and heart and follow you both wherever you end up.

I too ask, where did our lives go? It is a sad question that shall never be answered.

[Jeanette]

Hi, Donna, my thoughts and prayers are with you and Pat. Life is so unfair at times. Don't give up though, listen to what the other girls have told you, they have a wealth of knowledge about this disease. I will keep you both in my prayers, Hugs, jeanette

[Lani]

Drs. Osborne and Schiff were among the authors. The discussed starting a clinical trial, but when???? Good luck!