Bad news on liver, node, etc.

[michelemd]

Dear Group:

You guys are all so helpful!! I am rather upset today as my latest CT scan showed growth of mets in my liver, and growth in nodes -- that means its back in my bones.

Its disheartening -- I went through Carbo-Taxol-Herceptin 5 mo -- all seemed well then Pow!! its back in the breast, neck and brain. (failed Taxotere, Navelbine, Gemzar)

Xeloda seems to be the last regular chemo I can try with the Herceptin.

Consulting a research Onc Monday, then I guess start Xeloda.
I am trying Celebrex -- though I have had intestinal virus for a while.

Meanwhile I have a pain in my right upper leg thats keeping me up at night. Doctors just prescribe narcotics.

Dont qualify for any clinical tials at moment -- need to see if brain mets are "stable."

I am really glad most of you are responding to chemo!!

I guess I will have to pray.

God bless you guys!!

Michele in MD

[Lisa]

Michele,
I'm so sorry about your scan results. I feel like you're in my boat. As soon as I get one met in remission, mets appear (or reappear) somewhere else. Unfortunately, there seem to be many of us in this way too crowded boat. I do have a question. Why do mets showing up in your lymph tell you they're back in your bones? Mets showed up in my nodes around the stomach, but the bone mets are doing much better.

Keep us posted.

Love and light,

Lisa

[Velva]

Michelle, Sorry you recieved bad news. I don't kwow what to say exept don't give up. Xeloda & Herceptin worked for me on skin mets for 9 mos., but failed neck node, but everyone responds differently & some have had more success. If it doesn't work some women try what has worked in the past. Sending prayers your way, Velva

[Lolly]

Michele, so sorry to hear about your news, but I will keep you in my thoughts and prayers that Xeloda will work for you. Have you had a bone scan to determine if the thigh pain is caused by bone mets? I know women who have spot rads to bone mets to alleviate pain, it seems to help in some cases.
You hang in there, and keep us posted on how it goes with the Zeloda.

Love, Lolly

[al from canada]

Hi Michele,
Very sorry to hear about another struggle. Some options: maybe try Herceptin + navelbine + xeloda. Many women are having tremendous success with this regime. Also, are you taking any supplements? Although many think it is snake oil, much of the research shows it works. I always like to think that the sum of all the parts is greater than the whole. Vitamin D, Olive oil (or oleaic acid), fax seed oil, and an adaptogen such as rhodiola may be helpful. I would stay away from tumeric if you are on chemo, as well as any other antioxidant. Excercise, yoga all help to build the immune system. As well, start watching comedies and fun stuff to get those endorphans flowing.
Good luck and thinking about you,
Al and Linda

[wlward]

Dear michelle
I am sorry this has happened.I had very good results with Xeloda for skin mets and hear good stories for others. All the best.
love
linda

[michelemd]

Thanks guys!!

The Navelbine didnt work for me at all. Will see what consulting onc has to say Monday. By the way we never got through to Dr. Fetting at Hopkins.

Bone scan not a bad idea -- to be sure. Since my cancer is one of those "visible" ones my doc has not ordered many scans for me. I am tired of the "assumptions." For pain she has recommended pain killers but I just cant live on pain killers.

I am still running a business, am trying to sell it. but it keeps me going really. I have been able to delegate more, added employees, etc.

The pain in the leg got worse today, and its wrecked my sleep. This is more miserable than chemo ever was for me.

I am watching progress of Lapatinib too. I am disappointed that none of the docs around here seem to recommend drugs for brain mets.

Thanks!!

Michele in MD

[StephN]

Oh NUTS!
Well, I am going to pray and visualize your brain mets as stable. Your brain is far too active to allow them any more room to grow, right??

There is the new drug Abraxane, but have no idea if it would be appropriate for you. Are you taking anything like Zometa for your bones? Perhaps you should be taking some kind of biphosphanate.

Keep us informed, ok. We are all sending our best healing wishes, so you can get on top of this disease.
Like Al says, don't forget the good supplements and the organic anti-cancer foods in your diet. I am pretty religious about all that.

I too am waiting for Lapatnib. Don't know if I will ever get it, but want the option if it would help at some point.

[Lolly]

Steph is right on regarding Zometa, all the bone mets people I meet at my treatment center are on a bisphosphonate; some are oral and some are given by IV.
Remember, you have every expectation of getting this situation stabilized, but it will require a pro-active approach.
Sending prayers your way.

Love, Lolly

[judiek]

Michele,

I'm sorry this beast is growing again. I have heard that Dr. Fetting isn't taking anymore patients...but I was told that 4 months ago too...he did take me...I hope he's not sorry. I would try him one more time. He is very good...caring Doctor...I feel very lucky to have him. I'm praying for you Michele...there has to be more out there for you to try.

Warmly,

judiek
Maryland

History

Discovered lump Sept. 2002 (mammo didn’t pick it up)
Dx Oct 2002-just turned 41
IDC and pagets disease, stage 2B, grade 3/3, nottingham scale 9/9
3cm, lumpectomy,clean margins
er/pr-pos, her2 neg, 2/25 nodes w/cancer
Nov 2002-March 2003-FEC (5fu, epirubicin, cytoxen)
March 2003- started tamoxifen
May 2003- finished rads (33tx)
June 2003-CT/PET Scan- clear
Started 3 month check ups w/lab
Dec 2003-complete hysterectomy
Jan 2004-extensive mets, both lungs & liver(labs normal)
Jan -stopped tamoxifen
Feb CEA-23 (0-3 normal) CA27.29-66.1 (0-38 normal)
Feb 23to current-clinical trial, taxol & avastin
April 15th, -CT-significant shrinkage on all tumors/plueral effusion gone
June 8th -CT-all liver lesions decreased in size/lung mets gone
Aug 9th, -CA27.29 is 22.3, CEA is .8)
Aug 9th, 2004-Brain-CT neg, lung mets/pleural effusion still gone, liver mets had slight shrinkage. Largest hypodesne lesion is 2.1cm, 6 others 1cm or less.
Sept 13th-bone scan negative, mri revealed herniated disc.
Sept 27- Ct of brain, negative/lung mets still gone/ 2 liver lesions gone, 4 under 1cm, 1 @1.7cm.
Nov 29-CT shows stable, lungs still clear, liver tumors stable
Jan 11, 2005-CA27.29 23 / CEA 2.9
Jan 18th, Ct shows disease is still stable
Jan 27th, Brain MRI negative
Feb 8th, -CA27.29 is 22.1 / CEA 3.7 (slowly rising)