I could really use some input

DeenaH · 10-26-2010, 10:17 PM

Everytime I think I have my mind made up about how to proceed with treatment, something happens and my head is spinning again.

As a quick recap, since I haven't had a chance to add my signature with my particulars, I was diagnosed with stage IIIC locally advanced IDC. I did neoadjuvent chemo and had a bilateral mastectomy in September. The path report showed that I still had 18/51 cancerous lymph nodes, my originally 7cm tumor was 3.2cm, and cancer was found in the fatty tissue outside the nodes. Originally my mammory and suplaclavicular nodes were also involved. With that much cancer after chemo, there is no question that I need more treatment.

My Dr. wants to go for adding Lapatinib to Herceptin after radiation. I'm supposed to start radiation next week. I have been to Stanford and CTCA for opinions in the last couple of weeks. Stanford was no help, and CTCA is recommending more chemo followed by radiation. While at CTCA, they did a CT scan, and it showed several spots on my lungs and 1 lesion on my liver. All were too small to test (largest was 4mm), and might or might not be cancer. Since I have an aggressive cancer and it was so locally advanced, it scares me that these spots could be cancer.

While I was at CTCA, the oncologist wrote an email to Dr. Slamon since I told him I wanted his opinion before I make any decisions. Dr. Slamon recommended the Lapatinib first, then TDM1, then chemo. But, he doesn't know the whole story. He didn't know I was doing radiation first, and he knew nothing about the CT scan. I've been trying to get in to see him for over a month, and still can't nail down a date. His nurse hardly ever responds to my emails. I'd still really like to get his opinion when he has seen all of my scans and reports.

I go to a support group run by an integrative medicine Dr., and he is very knowledgeable. He says the argument for doing more chemo now makes alot of sense with the cancer left in my body. They also ran a CTC Test to see if there are cancer cells in my body. IF that number is elevated, that will make me think the cancer could spread anywhre from there. Do any of you know about this CTC test? How accurate is it?

At this point I either have to put off radiation to start new chemo. What scares me is that I have spots on my lungs and liver that we don't know what they are. Other than the radiation that is targeted to the lymph nodes, chest wall and axillary area, the only other treatment I would be geting would be Herceptin. All of the doctors I have talked to agree that Herceptin alone will not be enough.

I go to a support group that is run by an integrative medical Dr. He strongly suggests that if I decide to continue with radiation, I should push for another CT scan within 6 weeks to see if the spots have changed or grown. I am also getting the results of a CTC test that shows cancer cells in the blood.

I am so unsure about which direction to go in. If you were me, how aggressive would you want to be?

1. Do my radiation and then add Lapatinib to Herceptin if my Dr. wins the battle with the insurance company. I would want follow up CT scans to make sure the spots havent changed at all. Maybe every 4-6 weeks.

2. Try to get into a TDM1 trial.

2. Postpone radiaion and do Carboplatin/Gemzar and Herceptin. This would be done at CTCA so my healthy tissue can be spared and we get the benefit of the natuepathic Dr. to help manage my side effects, etc...

I'm just so afraid of making the wrong decision here. My gut tells me that there is more cancer in my body (and possibly spread to my lungs). I feel like I need to be aggressive. Do you think after finding out about the CT scan, my dr. would opt to be more aggressive too?

Bascially if I decide to move forward with Radiation, I will be pushing to be watched like a hawk. I want another CT scan in 4-6 weeks, I want my tumor markers taken every week, my liver function every week. I also had a CTC test run to see if cancer cells are in my blood.

Any thoughts on this huge mess? I hope this was not too difficult to follow. My thoughts are all over the place, so it's hard to get it organized into a post.

sarah · 10-27-2010, 12:30 AM

Hello Deena,
I can't answer your question but.....
Since you want Dr. Slaman's input, you will have to call his office and woo his nurse/assistant since she/he is the key to getting to him. Maybe you don't need to meet him in person but only be sure that he has the copies of your reports so that you can just have a phone conversation. Unfortunately all of us with HER2 would love to see him but his time is limited and research is his most important gift.
With an aggressive invasive cancer, aggressive treatment seems to be the logical choice.
I hope Lani will answer because today it seems that bc is being divided into sub groups therefore there may be more tests that could be done on your tumors to more specifically identify what sub group it falls into and that may point more directly to one set of treatment over others.
Good luck with your research and your health.
It's good that you are in a supportive support group.
hugs and love
sarah

kiwigirl · 10-27-2010, 12:32 AM

Wow! I can't recommend your next course of treatment but i do really like how your looking at all your options first. I to believe that your first line of treatment is the most important. A second opinion is always a good way to start. I wish i could give you more advice. I'm thinking of you over this tough time and sending you lots and lots of positive thoughts. Stay strong.

Jacqui

DeenaH · 10-27-2010, 09:26 AM

Thanks ladies. I am going to try to get in to see the other Dr. that works with Dr. Slamon. She is involved in the trial I am interested in, and has many more clinic days than Dr. Slamon. I have an email in to Kimberly now.

I think my biggest concern right now is the timing of treatment. I am wrestling with which treatment to do too, but I'm afraid that waiting to add another treatment to Herceptin until after rads is risky. If the spots do turn out to be cancer, that means they grew there during Herceptin and that Herceptin is not working. If I continue only Herceptin until after 6 1/2 weeks of Radiation, and the spots are cancer, that gives them alot of time to grow. My gut is telling me I need to put off rads and do something now. The problem is that it is going to be a battle to get Lapatinib, and that is going to take time too. Even getting qualified for a trial takes time. Do I have that kind of time? If not, maybe chemo is my only choice right now.

I also have a call in to my local onc, who I really love. She still doesn't know about the spots, so I don't know if she would still recommend rads now or later.

On one hand, I can see why my doctor didn't run a CT because we can't tell what these spots are. If they turn out not to be cancer, then I will have done all of this worrying for nothing. On the other hand, if they do turn out to be cancer, I will be so happy that we found them when they were still tiny.

CourtneyL · 10-27-2010, 10:26 AM

Oh Deena my dear, I am so sorry you are in such limbo right now. I just sent you an email before reading all of this.

My two cents - why haven't they done a PET scan? This will show whether the spots in your liver/lung are metabolically active and likely to be cancer. A CT is not enough. It only shows masses but does not indicate whether they are actually cancer (as you know). I'd ask your onc to send you for a PET pronto. If it is mets, then I am in favor of postponing radiation in favor of a systemic treatment. The radiation will do nothing to treat the mets and this should be your primary focus - controlling regional spread. Lots of great options for systemic control. Tykerb is a great option as is T-DM1. I'm sure when you meet with Melisko next week she will help you sort out all of the available treatments. Gemzar is also a good chemo option, paired with Herceptin. You could receive it locally (as opposed to going to Chicago) as it is an approved therapy for breast cancer. I did it for 6 months and it cleared up my lung involvement with minimal side effects.

Hang in there, sweet girl. The answers will come.

ElaineM · 10-27-2010, 10:37 AM

I can't tell you what to do, but I also like how you are considering all options and possibilities. One way to find out if the nodule in the lung is cancer is to try to get a PET/CT scan. Sometimes CT scans can't definitely tell what something is, but the PET will probably be able to determine whether or not the nodule is cancer or if there are any other areas of cancer that have not been identified.
I like Dr. Salmon's idea even if he hasn't seen all your reports. He is one of the world experts on her2 positive breast cancer and he is still doing research. If Dr. Salmon thinks T DM1 will help that means alot. Perhaps you can find a way to get your reports to him and if he can't talk to you in person maybe he would be willing to discuss your situation with your doctors or talk to you on the phone for a few minutes.
It does sound like this is going to be quite an experience for you. The integrative medicine is going to help you get through it too.
You make the final decisions no matter what the doctors think. Do what your intuition tells you that you need after you talk to all the doctors and get all the opinions you need.
Take good care of yourself. We are cheering for you !!

DeenaH · 10-27-2010, 10:45 AM

I just had a PET/CT on August 20th. Wouldn't these spots (largest being 4mm, and most about 2mm) be too small to show up on a PET? I don't want to expose myself to that kind of radiation when the spots are too small to show up on the test. Is there any other way to tell if they are cancer besides a PET, and when they are so small?

Jackie07 · 10-27-2010, 03:55 PM

Deena,

I would take Dr. Slamon's recommendation and not to worry about the radiation treatment at this point.

Chemo/Herceptin is a systemic treatment that reaches every corner of your body. With so many lymph nodes involved, you really want to use Herceptin to wipe out any cancer cells anywhere.

Part of the reason of my opinion is that I don't think radiation is that effective to either treat or prevent Her2 breast cancer. I had the standard radation (33 rounds?) after my 18 weeks of chemo/Herceptin. It had no effect on the Her2 breast cancer whatsoever. Instead, because I'd had radiation, my recurrence was misread to be 'scar' tissue' and did not get treated until four years later.

You really need to follow Dr. Slamon's recommendation as he 'is' the authority on treating Her2 breast cancer.

Sandra in GA · 10-27-2010, 04:10 PM

Deena,

I know you are getting a lot of advise. But, if you don't mind I would like to point out something about my treatment. I had my radiation treatments while I was also taking Herceptin and lapatinib. I was in a trial at Mayo in Jacksonville. I had the Herceptin and lapatinib (daily) with Taxol weekly for 12 weeks then when they started giving me the Herceptin every three weeks while I was taking lapatinib, I had five weeks of radiation. If they could combine your treatments, it seems that some of your concerns could be addressed.

I wish you well ~ Sandra

DeenaH · 10-27-2010, 04:45 PM

Jackie and Sandra - Thank you for your input.

Jackie - I am already on Herceptin, and have been since late June. The plan all along was to continue Herceptin through radiation. My Dr., however doesn't want to add Tykerb during radiation for safety reasons. I didn't question it since I didn't know what I know now at the time. That is very interesting about your take on the radiation.

Sandra - Do you know what toxicity Tykerb has? For some reason my dr. doesn't want me to take both Herceptin and Tykerb during radiation. I am also concerned that if I start radiation and then stop to do more treatment, will I be able to finish radiation at a later date? I guess that would be a question for my radiation oncologist. In fact I just made an appointment with her to see her right before I am supposed to start radiation to go over all of this. At that time I can decide whether to move forward or not.

If I decide to move forward with Tykerb right away, there is the problem of insurance approving it. Since it is approved for stage IV only, there is a chance it could be denied. And even if my dr. wins the battle with insurance, that will take time. I can try for the Emelia arm of the TDM-1 trial (Dr. Slamon's second recommendation) comparing it to Xeloda and Lapatinib, but again, getting into a trial takes time. The only thing I know I can get immediately is chemo. This limbo stuff is for the birds! I just want to have a plan and run with it.

Sandra in GA · 10-28-2010, 05:29 AM

Yes, The Tykerb does not affect the heart like Herceptin can. As you probably already know, the worst side effect of Tykerb is the diarrhea. It can be quite debiliating. I did have to take potassium supplements during the year I took it. I found (after much trial and error) that a LOW fiber diet (white bread, meats, canned fruits, and only fresh green beans and asparagus) along with Immodium and Lomotil at the first signs of problems allowed me to go the whole way. The only reason I got into the tiral I was in was because so many women had dropped out because of this. I did not notice any increase in these symptons during the radiation. As a matter of fact my radiation onc laughed at me because I kept telling them how much better I was feeling during treatment. The Taxol along with the Herceptin and Tykerb was MUCH worse for me. I did not experience the radiation fatigue until the very last week. It wasn't nearly as bad and what I experienced with the A/C and Taxol phase.

I hope you doctor can get you approved to take this. I feel so blessed to have been able to have it with my Herceptin. I had 21/21 lymph nodes and growth outside, so I was just before becoming a stage IV. As a matter of fact, my breast surgeon was shocked when my scans didn't show mets in any organs. Somehow, I ended up where I needed to be to get the treatment necessary.

You are going to the best experts. I am sure they will come up with a winning plan for you.

~ Sandra

SunDiego · 10-28-2010, 01:48 PM

My wife had the good fortune of being seen by Dr. Slamon this week. For those interested in seeing him, he does not take new oncology patients, but is willing to see patients for consultative purposes only. His partner, Dr. Sarah Hurvitz, does take new patients. You cannot simply email his nurse in the hopes of getting an appointment (too many people try that). It took us a few months to get in, but basically you need to call the appointment line, speak with them about your interest in an appointment. Then we forwarded all of our medical records to them. Dr. Slamon only comes to the clinic once in a while, and his calendar is only made available last minute. So they will call you if there is an opening, and you must be able to drop everything to go see him during that opening. Hope that helps!

On a related note, he was very positive about the current research and specifically commented that he sees very big things coming for Her2+ treatment in the near future. He's also excited about TDM1 and wasn't overly concerned about the recent FDA postponement (he suggested it was just a formality).

Dr Slamon is an amazingly down to earth and compassionate man and is an incredible resource to the community.

DeenaH · 10-29-2010, 09:37 AM

I got some great news last night. While I was at CTCA in Chicago, they ran a CTC test (circulating tumor cell). I just got the results yesterday. I don't know if anyone else has experience with this test because I had never heard of it until last week. It can identify cancer cells in the blood. It's supposedly better than tumor markers. My results showed zero cancer cells in my blood!! The doctor said this means I am NED.

Does anyone know if cancer can get to your organs via the lymph nodes and not be in the blood? My husband's friend works for the company who developed this test, and he said it will someday be replaced by the tumor marker test because it is so accurate. He said if my result is zero, that means I have no cancer in my body. I'm afraid to get too excited though.

I finally heard back from Dr. Slamon's nurse, and I can get in to see Dr. Hurvitz on the 19th. But, I think I am going to skip it. I got Dr. Slamon's input in a round about way, and I am seeing Dr. Melisko at UCSF next week. Her husband also works at UCSF and is supposed to be a HER2 guru. I hear wonderful things about Dr. Melisko, and feel like seeing her is my best bet. I can always see Dr. Hurvitz another time, or I can continue to try to see Dr. Slamon. I am also still waiting to hear back from my local oncologist, whom I have alot of faith in.

SunDiego · 10-29-2010, 10:17 AM

DeenaH, I wish I could tell you that a score of 0 on the CTC means NED, however I do not believe this to be true. My wife has had two CTC tests done, both of which have come back at 0, however she has a single metastasis on the liver that has been biopsied to be confirmed a met. It still lights up on the PET/CT. And her tumor markers are still elevated. Basically, she is NOT NED, but her CTC score has been 0.

I'm no doctor, but this is pretty clear evidence that cancer can spread without being evident in the blood. Your husband's friend seems to have given irresponsible advice.

Try the Serum Her2 test as well, if you have not already done that. It is a circulating Her2 test.

DeenaH · 10-29-2010, 01:14 PM

Looks like I was right not to get too excited. I talked to my onc today, and she confirmed that she has had patients with mets test 0 on the CTC. She did say it's a good sign that there isn't cancer in my blood, but I can't count on that to tell me if there is NED. I asked where she is in the process of getting Lapatinib approved, and she said my insurance hasn't even responded yet. She is ready to get the help of the drug company to help back up her fight. I may also get something from Dr. Melisko saying I need it, just in case. She said her reasoning for being aprehensive about me being on Lapatinib during radiation has to do with skin toxicity. She said if my skin seems to be holding up well with radiation, she would be more apt to let me start it sooner than later. I didn't tell her this, but I am going to push for another CT in a few weeks just to check on the spots to see if they are gone, or growing. I was congested with a cold when I had the CT, so there is a chance the spots were from that. Hoping...

Thank you all for the input! It's so nice to have a sounding board here. Especially before I can talk to my doctors. Now that I know this about the CTC, I'm questioning whether or not I should just forget it and do chemo, then radiation. I am seriously considering putting radiation off by a week so I have a chance to go to UCSF before I make a decision.

SunDiego · 10-29-2010, 01:40 PM

Be sure to get the PET/CT if you haven't already done it. CT alone isn't sufficient. You need a PET to see if there is any metabolic activity. Wouldn't hurt to also get a bone scan and brain MRI just to rule other things out as well.

Jackie07 · 10-29-2010, 01:51 PM

Deena,

CT involves a lot of radiation. Can you do an ultrasound?

DeenaH · 10-29-2010, 02:19 PM

Sun - I just had a PET/CT August 20th, and I had a bone scan the same day as the CT last week. Bone scan was clear thank goodness! I've wondered about a brain MRI, but my onc hasn't wanted to order one. I may push for one though. Especially since I learned that MRI's have no radiation.

Jackie - Ultrasound for lungs? I didn't know they could do that. What can they see on u/s that they can't with the CT I already had? I know there is alot of radiation with CT's. I wish there was an MRI they could do on the lungs and liver. I'll ask my onc about the u/s. I also don't know that they could see through my implants with u/s.

Lien · 10-29-2010, 02:29 PM

Hi Deenah,

I see that you received a lot of very good info. I just have one comment to make on the lung nodules: over the past 10 years 3 of my friends had a big scare, because their docs suspected lung mets or lung cancer. In all three cases the nodules turned out to be benign.
So please keep that option open in your mind. One of them even had extensive surgery as she'd had three breastcancer recurrences and her doc was sure it was a malignancy. No such thing!

I hope it will turn out to be like that for you. Keep breathing in and breathing out. You are doing great.

Jacqueline