Mom/questions

I found this website yesterday and am so thankful for all the great info. My mom is Stage IV, extensive mets throughout spine (two vertebrae nearly gone), mets in pelvis and multiple lesions in liver. We've been given a minimum of info from the doc - so frustrating, She has appt today for results of echocardiogram, and possibly to start chemo w/ Herceptin. She's on 160mg/8hrs of oxycontin (this has been increased 2x in the last week), w/ MSIR 60mg as needed for breakthrough pain. I am woefully uneducated about all this and trying to quickly fill in the gaps - Is it possible she can max out on the pain meds? A couple of weeks ago, they were saying not to worry about the pain, they could control it, now are saying that it will be a balance between how alert she wants to be and what level of pain she can accept. Have any of you experienced this? I don't know what level of confusion I can expect with the meds she is on, but she has times where she is significantly confused, and she has times where she is very alert, and there does not seem to be a rhyme or reason to it. I don't know if lungs or brain have been scanned, but based on some of the postings here, I intend to find out. Also, she was in the hospital for a couple of weeks for radiation and pain control - Doc said that there was not enough tissue from liver biopsy to determine Her2neu status, but that initial breast cancer dx in 2000 was Her2neu+ (Stage I DCIS left breast, lumpectomy then mastectomy, clean nodes, give clean bill of health until three weeks ago) and they could make an assumption from that. Can that assumption be made (like I said, woefully uneducated!) from your experience? Can or does it ever change? Mom does not want to hear the answers to many of the questions that Dad and I have, and the onc has not been very available - I am sure she would give him permission to talk to us, though, so we have to try to cross that hurdle today. Sorry for long post - Just starting out with research (totally overwhelmed) and any information would be much appreciated. Thanks so much for such a great support site.

Mel

Sorry you and your Mom have to deal with this. I hope she can find a chemo that will improve her condition. I am also an "older" woman and Stage 4 but Navelbine and Herceptin have brought me to clean liver, lungs and bones.

I get copies of all my test results and have learned how to read them. It is a patient's right and, in my opinion, responsibility to know what is going on.

The women herewill have answers to most questions you could ask!

Good luck.
Jane

Dear Mel,

I too am sorry to hear about your mom's condition. It looks like your doing a great job with your dad. Hang in there and be an advocate (along with your dad) for your mom.

As JaneP stated, get copies of all of your mom's recent diagnostic tests (e.g., PET scan, MRI scan, CT scan, blood tests, etc). You indicated that she had Stage IV mets to the spine, pelvis and liver. Get a copy of the medical test(s) upon which that determination was made. Ideal testing for an HER-2 positive breast cancer patient is a PET scan from the base of the neck to the lower calf and an MRI scan of the brain.

Also, obtain a copy of your mom's original 2000 pathology report. You indicated that the report states that the breast cancer was HER2 positive. Your mom should be able to get herceptin if she is HER2 +2 or +3 as measured by IHC testing or + as measured by FISH testing. It is generally known that FISH testing is a more reliable measure of HER2 status. If your mom was IHC tested in 2000, the tumor sample can be retested by FISH if the sample was preserved. It is highly unusual for a truly HER-2 positive primary breast cancer tumor to change HER-2 status upon metastasis or in Stage IV.

Also check your mom's 2000 pathology report to see if her cancer was estrogen/progesterone positive. ER+ HER-2 positive breast cancers can also be treated with anti-estrogen treatments such as Femara, Exemestane (Aromasin), and Faslodex, assuming she is post-menopausal. If she is not menopausal, there are ways to effectively create menopause for this purpose.

If you mom is HER-2 positive (i.e., +2 or +3 as measured by IHC or positive as measured by FISH), she will likely receive herceptin in combination with one or more chemotherapeutic agents. Jane P mentioned navelbine above. Accordingly, the following combos are quite effective:
1. herceptin and navelbine;
2. herceptin, taxol, (with or without cisplatin or carboplatin); and
3. herceptin & taxotere (with or without cisplatin or carboplatin).

You can search for potentially available clinical trials at http://www.clinicaltrials.gov. under the search terms "herceptin" or "HER2/neu".

The most important thing at this point is to control your mom's pain and to obtain an accurate diagnosis with respect to the nature and extent of your mom's metastases. The cancer appears to be in the bone and liver based on your comments but I would also demand an MRI of the brain. Also, get permission from your mom to allow the doctor to speak directly with you and your dad. In this way, you and your dad can assist your mom in making decisions as you move forward.

Once you get a recommendation from your doctor, post it on the board along with relevant 2000 pathology report info and relevant recent diagnostic test info as discussed above. The women (and men) on this board have a vast amount of experience with respect to virtually every aspect of this form of breast cancer. It is an outstanding, caring and informed community. You are always welcomed here. Keep the faith and hang in there ... you're doing great!

If you have more questions, please feel free to post at any time.

Mel,

So sorry about your Mom.
Be assured that here is someone posting on this board who has gone through a similar circumstance as your Mom. Please post all the information you can from her records, also include her age and overall health issues, everything makes a difference. Remember that the biggest difference is that she has someone to support her through the tough days.

Be absolutely sure that her oncologist is telling you everything, and if s/he is not cooperative, you have the right to change him too.

My wife was dx in 99, no positive nodes, four A/C and 30 rads. No symptoms, no bad check-ups, them mets to both lungs, July 03. Like you, we were devastated for a few days then we began planning the fight. I think maybe the tears help the determination grow...

Please know that you all have already been lifted in many thoughts and prayers since your posting. Thank You, for being there for your folks and taking the time to search the web for answers. I do not believe you found this site by accident!!!

God Bless You,
ron

Thank you, Thank you, Thank you!!! This info is so helpful and has raised a ton of questions for her doc. The website (breastcancer.org) was very informative too, and so positive, much like this one. It answered a lot of our questions too. So thankful that this great support network exists.

Thank you one more time!

Mel

Lolly,

Thank you!! I'm so glad that you have done so well, and it gives me hope for my mom, too - thanks for sharing. My goal is to get the best care possible for her, and I know we can do that (with the right information!!)

Thanks,

Mel

Thank you so so much Ron. I appreciate the thoughts, info and advice so much. I will be thinking of you and your wife as well in your battle.

Thank you!

Mel