TRIPLE POSITIVE GROUP

Jumpship

Thanks Special. Did you do Perjeta? My original dr did not put me on it and the new dr is just following the old plan. I feel like I'm missing out on a possible key to survival. I see the dr in two weeks and will ask again.

knmtwins

Minivan - I'm not sure if Perjeta was available for Stage II, when Special was doing her chemo. It was only approved by the FDA in the neoadjuvant (pre-surgery) setting, for Stage II and III in October of 2013. Mind you, NCCN guidelines have a footnote recommending it in the adjuvant setting if neoadjuvant wasn't done. Therefore, some people are getting it after surgery, but it might be a discussion your MO has to have with your insurance company to get it. It is expensive, my chemo center bills it at $14,700 and it's negotiated price with my insurance company is $4,036.16. That is for EACH dose, and my first dose was a double, so double that.

Here is a link to the NCCN 2014-1 guidelines, (takes a long time to load) I'm sure your MO has access to more up to date one, but you might want to scroll down to where it says page 46 on the pdf scroll bar, but on the document it says - BINV 1 of 7 and show your MO footnote 8, which allows you Perjeta (pertuzumab) in an adjuvant setting. This might help if you want Perjeta added to your regime.

debiann

I met my BS first and had a lumpectomy, then met my MO in April 2014. He was disappointed that I had already had surgery because he would have recommended neo-adjunctive TCPH. I knew from reading these boards that some insurance companies were paying for adjunctive Perjeta, too, but I was a bit hesitant to add yet another toxic chemical into the mix. At the time Perjeta was so new and I could find very little information about it. The MO and I decided that Herceptin was very effective and may be all I need. Perjeta would still be available if I needed it in the future, so I did just the TCH. In hindsight, I see many doing well with the added Perjeta, perhaps I should have pushed to have it. Time will tell.

Jumpship

Thanks KNM. I had to wait almost 3 months from diagnosis until surgery and I was not permitted to see the oncologist. As long as I had to wait I still don't understand why they would not have moved me along to oncology and started the chemo with the perjeta. Oh-to be a person in their eyes and not just the "11am appointment"!

knmtwins

3 months - are you in the US or another country. If in the US, maybe time to find a new team.

rleepac

I was told by 2 local docs and 2 major University Cancer Centers when I called to inquire about making an appointment that 'surgery is ALWAYS first'. They never asked if I was HER2+ or any other details of my case - but I don't believe it's become a new 'standard' yet - at least it hasn't affected the scheduling desks! It wasn't until my BS took my case to the Tumor Board, that they decided chemo first.

Note that I did have an excisional biopsy (not quite a lumpectomy but more than a core needle biopsy) so I think I'm still considered neoadjuvant? I don't think it would have changed the opinion of the Tumor Board though even if I hadn't already had the tumor excised. Dunno and it's irrelevant now...I will be getting Perjeta added to my regimen and that's what I feel is important!

SpecialK

mini - I had chemo in 2011, so Perjeta had not yet been approved.  Also important to note that the size cut-off for Perjeta is supposed to be 2.0cm or larger, although some have been able to get it for smaller masses.  Oncologists seem to be able to administer Perjeta for smaller masses, and add it to adjuvant chemo, if they do a peer to peer with insurance companies.  I have not seen posts from anyone who has tried to get Perjeta and been turned down by their insurance, it has mostly been a case that they were unaware of it, or their oncologist did not yet have experience prescribing it.

Pbrain

Peeps! I'm so far behind and have to catch up on my beloved board!!! I miss you and I want to hear all about the newbies, so I'll get to reading. I finally took a vacation day. I've been involved with "the most visible project" at work and have been pulling out my beautiful, healthy, happy hair.

Fluff, did you ever hear from Dr. Bhatia? If you want to PM me, I can give you the contact info of his NP. He is fantastic, but very busy.

Ok, lots of short messages from me coming up as I read. I miss you gals so much! And I'm doing great! Sleep issues with Arimidex, but the neuropathy in my feet is getting way better. And if anyone needs some info on a natural product for hemorrhoids, I have become their new spokesperson tee hee, JK, but it is great stuff!

Pbrain

Debiann, if you are on arimidex for 4 months with no SEs you are a blessed, lucky woman. I started in June, and by Christmas, I was barely able to hobble up the steps of the SEPTA train to travel to the airport. My poor Mom was in tears watching me go. Over January, I started to think about getting a cane (at 54 years of age). By March, I was back to my old self. So I think you are out of the danger zone, GF. Congratulations! Now, I really have no problems with arimidex, just some zits and some wanting to sleep through my alarm clock every morning...tee hee, pisses my boss off, but his wife is a survivor too with the same issues.

Pbrain

Special K, you are such a great and amazing supportive guru on this board! I love your amazing knowledge about these new drugs!! Thank you!. :-)

lago

Mommato3 & formydaugher My MO told me that adjuventonline is alive and cancer free. I would be surprised if the others weren't the same.

Mommato3

The Predict website just said x number of women are alive so I assumed that meant alive whether it was with a recurrence or not. I certainly like seeing alive and cancer free!

SpecialK

pbrain - what a nice compliment, especially considering what you do at work!

Anonymous

hey pbrain! I did finally gets through to Bhatias office. However, I met with Keith Logie this week and was very impressed with both his intelligence and compassion. I just decided to cancel my other two appointments and stay with him.

He spent over an hour just talking with me, and was answering questions before I even had to ask them. My worry is that he is 61, but I made him swear he would be around at least 5 years.

To all those asking about percentages, he placed me at less than ten. Told him my theory of zero or 100 and he laughed saying there was some truth to that.

Pbrain

Hahahaha! Fluff, you crack me up! You remind me of myself watching pilots eat in the airport. If they are putting Brewer's yeast on their vegetarian meal, I want them flying my plane!

I'm so glad you've found someone you feel good about. I hear Community South is now MD Anderson affiliated, so you are in good hands!

flaviarose

Hi Pbrain, I'd be interested to hear of your natural product for hemorrhoids. I used to use preparation H, but after reading the label I stopped because it is full of parabens.

lago

I have found the best solution for hemorrhoids is sitting in a warm bath.

Anonymous

Pbrain, unfortunately I am no longer with the Community Network.

However, my late oncologist and my BS both laughed and rolled their eyes about the MD anderson affiiation. They say it doesnt mean much. Just looks good to patients. My oncologist actually said he had no need for that as he was better trained at organizations with better reputations. I think he did a lot of his work at the national cancer institute or whatever it is called. Both said it was more marketing than anything else.

Jumpship

Muga help please!

I had an echocardiogram to begin chemo and now I'll have my first MUGA tomorrow. They mentioned drawing blood and then putting in an iv....but no one in the office does port access so they'll be relying on my little vein that collapsed two weeks ago. Ok, so not liking that. Then she mentions a machine that will be place just a few inches above my face and chest. What???? For how long???? I was fairly medicated for my last PET and MRI scans and still had to practice all of the calm down methods I knew.

Can anyone tell me more about this procedure? As I was not expecting it to be different from the echo I don't have a driver lined up for tomorrow so I can't take ativan. Who creates these machines?

Mommato3

I haven't had an echo so I don't know how the Muga compares. Basically you lay on this narrow table and they place a strap across chest to hold your arms so they don't drop below the table. Then the table moves under the machine. They take 3-4 different pictures of your heart and it takes about 20 minutes or so. The machine takes a picture on the left side, straight above and the right side of your body. It does get really close to your face when it is directly above you but there aren't any sides on it so it isn't like being enclosed. I'll admit it was a little weird when the machine kept getting closer and closer but I just closed my eyes until it stopped moving. I've had four Muga's done and it doesn't bother me at all now.

Anonymous

minivan-

I only had echos, so can't help you there, however, if I knew there was going to be some sort of blood drawn, I would always run by my ONC's office. They would access it and then then cover it so it was kept protected. I always did this before my surgeries.

ElaineTherese

minivan -- RE: MUGA -- There is blood drawn which is then mixed with a tracer and shot back into you. I always use my port. The most time-consuming part of the process is waiting for the tracer blood to get back into circulation (20-30 minutes). At least at my hospital, the scanning only takes 5 -- 10 minutes, and my tech likes to do it in the dark (some light in the room because the door is open).

debiann

Minivan, Muga scan is not as bad as it sounds. They didn't use my port either. They inject you intravenously with radioactive isotopes or something like that. It's a tracer that shows up on the scan to see how your ticker is pumping. After you're injected you wait about 30 minutes to give it time to circulate.  

I'm very claustrophobic and can't tolerate mri at all, but I'm fine with muga. You lay still on a very skinny table. They do 3 scans, 2 are 5 minutes each and the last one is 10 minutes. There is a flat screen that hoovers over your body, but its open on the sides so you don't fell closed in. For one of the scans its kind of close to your face. Its not noisy like mri. I actually feel asleep last time. So that's it, in and out in less than an hour and you don't really need a driver. Good luck to you!

Pbrain

Mini, MUGAs are no big thing, and this is coming to you from a major claustrophobic. My biggest fear once digesting the BC diagnosis was "how can I do this without crapping my pants in teeny tiny tubes?" You'll be fine, but I'm sad they won't use your port. They used mine and it made things so much easier.

Fluff, so you're saying the MD Anderson thing is "fluff"? Tee hee! I suspected it was for Marketing mainly, but it does make us unwilling victims feel better somehow. But yeap, I knew my docs were doing what they normally do. The only difference that I saw (maybe?) at Community North is that they had a bigger access to their tumor boards. I know I was a tough case, stage 1a, no nodes, but a pretty big tumor for 1a at 1.6 cm. I know I was up in front of tumor board a bunch.

Flavia, the site is Nolly's Naturals and the product is Hem B Gone (gotta love the name!). I have not taken it as directed (3 pills 3 times a day_ but instead take 3 at night. It is oral witch hazel extract and it seriously, seriously has worked for me! I can't say enough good about it!

Jumpship

Thanks all! I'll do my best tomorrow but I think I'm going to ask for echos after this.

flaviarose

Thanks, pbrain!

Anonymous

pbrain...that is a great name for a drug, lol

Moonflwr912

minivan, I had MUGA s done and echos.my first time my left arm had to be above my head and it was only 2 weeks after my BMX! Can you say ouch?. I t took 20 min. Then they did it again on the new machine. The Radonc was comparing all the old readings to the new machine. Luckily the new one only took 8 min. By the time i was one i was shaking and crying. But they were very nice. They also did not use my port and tried to find a vein for a while finally found one yea. LOL the MUGA is more costly than an echo but is considered to be the gold standard.

Much love to all.

Bren58

For all of my sisters who are suffering from LE, I hope you were able to watch Kathy Bates on The Doctors. She is a high profile celebrity who is choosing to come forward with her struggle with LE after BC and to try to educate others. Thank you Kathy Bates!

Here is the link. http://www.thedoctorstv.com/articles/2953-kathy-ba...

chrissie29

Has anyone had an ECHO done with expanders in?  I had one yesterday and the tech had a horrible time doing this and this ECHO says my EF has dropped so I am not sure if it was the poor pictures or a true drop.  Has anyone had this experience?  Are ECHOs easier to do once expanders are exchanged?  Is this why a MUGA scan would be more appropriate?  Anyone know?