Starting Chemo in JAN 2007

Hi Ladies,

Just checking in. Still not feeling well and am pretty down that I have to do 3 more of these. The fog is really thick this time and I still can't see the lighthouse. I really hate this feeling and am frustrated.

I haven't read all the messages that are new, hope everyone's doing ok.

Aldora, Mizsissy and Joni, hope your chemo's went ok today. (and anyone else I missed)

I hope to start feeling better tomorrow.

Lynn

MrsShey - check with your oncologist's office about the OncotypeDx test again. The nurse at my onc's office told me that there are funds available for the test when insurance won't cover it. I've heard the same thing from several other people too. So, if you are a good candidate for the OncotypeDx test you should be able to get it even if you can't pay for it. It never hurts to double check.

Ilene - if you are feeling nauseous after the Emend call and ask if they can give you something else on top of it. I get Aloxi via IV before chemo and take Emend. Then when I get home I take both Zofran and Phenegran (sp?). I also take Ativan at night and sometimes 1/2 an Ativan during the day. All 5 combined work for me most of the time. The Phenegran is not very strong and can be taken as needed every 4 hours. I'm rambling a bit, but just wanted to say that you should be able to take something to make you feel better.

Congrats! I'm jealous. Thurs is my 2nd Taxol, keep a good thought.

Chey,

Even though your doctor has told you you have "had" cancer I hear your concerns. Your first shot is your best shot, "once the horse is of the barn there is little they can do" except to put you on a lifetime regemin on and off chemo to control or shrink cancer that has spread to other parts of the body. Dcotors think that individual cancer cells can break off during surgery and spread to other parts of the body.

I think you should try to get the Onctotype test. The following information is listed at the Onctoype DX site http://www.genomichealth.com/oncotype/about/reimbursement.aspx

Quote:

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Genomic Health is prepared to bill insurance plans directly on behalf of insured patients in the US whose physicians order the Oncotype DX assay. Genomic Health is working with major insurance plans to establish coverage for this new test. Because this technology is so new, many insurance plans are evaluating the assay and have yet to set policy.

Your physician can request a Benefits Investigation (BI) to determine if the Oncotype DX™ Breast Cancer Assay is covered by your insurance plan. Your physician can reach our Genomic Access Program (GAP) at (877) 235-4349 for assistance.

If a claim is denied on first review, Genomic Health will work diligently with the Medical Director of the specific insurance plan to appeal the decision, with support from the patient's physicians as needed. In those cases where all appeals are exhausted and there is a final determination on the claim, it is possible that the patient will ultimately be billed for any balance remaining on the invoice. Genomic Health is also obligated to bill the patient for any co-pays and/or deductibles as indicated by their insurance plan. The reimbursement professionals at Genomic Health will do their very best to minimize the patient's financial burden for this test, but they cannot guarantee success in all cases.

The Genomic Access Program (GAP) has been designed to assist you with any billing or reimbursement issues related to the Oncotype DX test. Genomic Health welcomes your questions and encourages you to contact GAP if you have questions. Please call (877) 235-4349.

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I have read stories of other women here who needed help, whose insurance didn't cover, and where they were given free tests by simply showing their tax return.

The other possibility is the TailorDX study. I am having trouble getting the web page to load that describes. Anybody who joins--and you would be eligible-will get the test for free. I joined this study. Unfortunately, I think the cut off date for this is March 6 (today), which may be whiole I am having the problem loading the page. Go here for more information...it is possible to join from anywhere else in the country

http://www.cancer.gov/newscenter/pressreleases/TAILORxRelease

Mizsissy

Chey,

Another thing you could do is just go right ahead with a chemo regimen so that you feel entirely safe. This is entirely your decision,and I think most insurance companies will pay for chemo. My chemo was very quick and easy to handle: I was on a two-month, 4 dose-dense regimen. The typical scenario for women in early stage as we are is either AC (adriamycin + cytotoxan) or TC (taxotere + cytotoxan). Adriamycin a little harsher on the body and has some risk of damage to the heart. Taxotere also has risks, but it seems to be highly effective and has some edge on the AC regimen in preventing recurrence http://www.breastcancer.org/research_chemotherapy_021706.html .

Taxotere is much more expensive than adriamycin, a much older drug, and costs abou $2200 per infusion vs. $300 for adriamycin. The infusion would also contain anti-nausea meds (aloxi,$300) which worked 100% for me. You would need to take steriods and ativan to boost your body before and after treatments, as well as Neulasta or Nuepgen shots, which are all quite expensive. The total costs for a 4-term infusion would range from $20000-$40000.

This is why the Oncotype test can be a boon for insurance companies, because in the long run it can save money.

In any case, you need to find yourself a very good oncologist, you can help get your Onco test, who can help you join Tailorx study, who will support your properly with anti-nausea meds, steriods and so forth, and make sure you get Neulasta or Nuepogen to boost your white blood cells if you are taking a dose dense regieme. I would suggest you get a referral from one of the larger, better know cancer centers in your area.


Still...another option. There is a new drug out called DCA, which I'll put in another post.

Mizsissy

Mrs. Shey,

I think you made the right decision. My situation was very similar to yours. The onc said it was "up to me." After talking with several specialists, I decided to do the chemo and the rads. As my radiologist said, "It is easier to fight cancer with prevention than it is to attack it and cure it." He also said that if you do the chemo, you'll always know that you did everything you could to prevent a recurrence and you'll never wonder and say "what if." Also the grade of the tumor indicates the aggressiveness of the cancer. Mine was Stage 1 but grade 3, which is the most aggressive. Therefore I chose to fight it aggressively. I see that yours is grade 2 or 3, which means it grows at a fairly fast rate, too. I think you made the right choice.

Rita

Good morning all, and good wishes to all having a treatment this week!
MrsShey - my onc recommended chemo based on my premenopausal status. The guidelines in Canada are: ER/PR- is considered agressive - chemo is almost always recommended. For hormone +, it is recommended if you are premenopause. Of course size, grade, etc is important too. Yours being less than 1cm is a good thing - they caught it very early - yeah! I felt as some of the other ladies, I'd rather go through chemo now, than regret not doing it later. What I want is to never hear or see the "beast" again - then I can wonder whether the chemo was necessary or not, but I can live with that uncertainty. Good luck with your decision. Chemo sucks, but it is doable.
Amera, I hear you about food - the first week or so I have the "rumblies" and think food would help, but nothing appeals. I wish there was a meal pill - like on the "Jetsons" from when I was a kid!

Viddie - I had a mastectomy on one side after my lumpectomy didn't get clear margins. The DCIS and IDC (and a third type I can't remember) were very wide spread on the mastectomy side so I talked at length to my surgeon, oncologist and a plastic surgeon about having the other side removed when I do reconstruction. But none of them think that I need to have the other side removed. I'm still a little torn on the issue. I did get my genetic testing results back after my surgery and that was negative. If it had been positive that would have made the decision easy.

I am also up in the air about reconstruction. The plastic surgeon here recommended implants or TRAM as my best two options. There is no one locally here that does DIEP so I am thinking about traveling to meet with someone who does. I just can't warm up to the implant idea - but that is my own weird issue. Part of it is not wanting to be lopsided for months with an expander on one side. With the TRAM I'd have to go down a cup size which stinks since I'm pretty small anyway. I've been thinking about this for months and still can't make a decision.

I guess another up side to having your surgery now is that you'll be able to have immediate reconstruction. I do see the advantage of having the bilateral so that you have both peace of mind and symmetry. There's a lot to be said for both.

Viddie,

I had my rb mastectomy back in December. AT the time they thought the tumor was 1 cm and it turned out to be 7.5cm multifocal and in all 4 quandrants of my breast. The MRI showed small enhancements in the left breast. I have discussed this with my surgeon and my Onc and they both support my decision to have my lb removed when I have recontruction. I will be having DIEP and have the initial appt. in April. It will be a while (late fall?) before I can have it done because I need rads as well. I am already happy with my decision because I can't live by 6 month MRI's feeling that I'm just waiting for the cancer to happen in the lb. Also, I had ILC which has a higher risk of bilateral disease. For me, the decision was easy because there are already enhancements in the lb, but I have read many many women on this board who had it done for peace of mind.

Lynn

Hello Everyone:

Well I made it through Chemo #4 FEC yesterday, although it took them 4 pokes to get the IV needle in....ouch, ouch, ouch, ouch. I came home, and slept from 2:00 PM til 6:30 this morning....Darling Dan woke me up to take my anti-nausea meds, and the rest was snooze ville.

My Darling Dan is in the hospital this morning. He is changing out all our lights for energy efficient ones, and he was in the furnace room completing those, when he slipped off the stool and crashed into the pointed end of the furnace. He wouldn't tell me last nite...but this morning when he was trying to get up, I knew something was wrong. He has a severe gash, and I believe he may have broken some ribs. Anyways he's currently at the hospital, and they are just sending him for xrays, and he also had to have a tetanus shot.

I loved your certification document Mizsissy...good for you. How's that cold of yours?

Melia, it was good to hear from you again, and to find out you did go on the trip, good for you. I think that Vitamin D is a good idea. I find club soda works good for me.

IowaCindy, I hear you on your gastro problems. I take Colace and also Senekot S, as the hemmoroids can really be painful.

Skye, good luck on the Taxol next week.

Jan, sounds like your daughter's birthday party was fun. And no "Turtle Faces" makes it perfect.

Viddie, thank heavens for 2nd opinions. The young girl that lives near me, also had to go back after a lumpectomy for a mastectomy due to DCIS. Hugs to you.

Lynn, I envy your bravery for being able to have the other removed. I currently have a mass in my LB that they are once again saying is a cyst (that's what they said about the other one), so I may consider having the prophalactic mastectomy on that one too after I'm done with chemo...and rads.

Mrs. Shey..good luck with your treatments, whatever decision you make, has to make you feel good.

Caya and Shorti hope you Ontario girls are doing well. Are you watching the curling?

Rita Jean, you sure sound good this week, I admire you after all you've been through.

Rebecca, Amera, you guys better this week?

Aladora....where do you get your energy, can you send me a bottle.

Hugs to everyone....Joni

**** We are each of angels, with only one wing, to fly we need only embrace each other ****

I go for FEC #3 this Friday, but I need some creative ideas for #4 which happens to be on my birthday. Since I have to have chemo on my birthday I thought it would be fun to have some kind of celebration in the chemo room. Something that would be fun for the other patients and the nurses. I'm hoping if we put all of our chemo brains together we can come up with something cool (but simple). Any ideas?

Greetings all!

I have been doing more lurking than writing lately...sorry. Actually I have been trying to save my focus for work...it takes a lot for me to keep a train of thought!

I am so glad that you have been going to work Robertin! I am with you...I would be lost without my job. I am not brave enough to do the commando thing, but I wear my scarf with pride, and I have had little if any disgusting pity thrown my way...and a lot of supportive smiles and compliments instead. very nice.

Viddie-I do not think that you are having drastic thoughts at all regarding the double mastectomy. If you choose to go the implant route, the esthetic results are actually BETTER if you do them both. I only did a single, and sometimes I think I should have gone the whole nine yards and gotten the other one removed while I was at it, then had them both rebuilt 6-million-dollar man style (better than before!!!). The problem is that many surgeons (like mine) do not wish to remove a healthy breast. I was scoffed at when I brought it up, and if I had been stronger at the time I might have gone for a second opinion, or been more strident. In the end it will be fine whatever you decide to do, and you have the time and the clarity to really be able to think it through...a luxury that I know I did not have when I faced the same decision.

As for me I am feeling pretty good actually. I am very tired this round, but the sleepies do not hit until the late afternoon, so I am good for work and school pick-up. I struggle through evening activities, and by the time I am home for good I am DONE DONE DONE (couch candy). I have to say that I really think that the light exercise helps a great deal with the energy level.

I am still coughing and sneezing from that stupid bronchitis, and I hope I am imagining it, but I think my nose is starting to run more heavily again. sigh.

I am having a real issue with my tastebuds this go round as well...everything has a bitter aftertaste. YUCK mandarin oranges, salad...you name it. Everything except CHOCOLATE (and strangely the nasty sludge that my husband makes every morning and calls coffee) tastes icky. Thank goodness for that...but it is not exactly the sort of thing I should base my diet on! I find myself picking and grazing more than I usually do, and I suspect because I am "looking" for something that tastes good....and not finding it. any suggestions? (except chocolate...which is still heavenly)

Oh...and congrats Mizsissy on being done! now you can see us through the rest of this trial with a clear head.

I am glad you are feeling better Amera...you sound more like yourself today.

I hope the rest of you that are currently recovering from an infusion are feeling better, and that those of you anticipating one this week are enjoying feeling well, and not stressing out about the treatment.

enjoy the sunshine!

I'm having a post chemo party, but a real one, at home. We're just inviting a few close friends, a couple artists, and our minister, who happens to be a lady 84 years old who is loads of fun and will probably say a few prayers just to put the right touch on everything.

I'm making it a potluck so I don't have to do too much and there will be some spirits as well to make sure everyone is relaxed. It's sort of a "coming out" party...letting people know I'm OK again, I can have fun and I'm not a "cancer" ...you know how people get strange ideas.

Mizsissy

I have a friend at work that chose the bilateral and never regretted it. For me, I am just doing one side as the surgeon says it would be a totally new cancer and a .8 percent chance per year of it coming there. I want to recover fast and I know with a bilateral it takes longer, with having to recover and with limited use of both arms. However since you always wanted a reduction, this sounds like it might be your wish come true. Good luck on your decision.

I just finished my #4 AC. Now i'm starting taxol and herceptin every other week. Has anyone started this? What are the fun things I should expect? thanks for the help.p.