November 2014 Starting Chemo Crew

I keep getting that darn neulasta shot and I hate it! The bone pain from the third round was incredible. I didn't leave the house for a week.

Midlifecrisis, have you tried tea tree oil on your nails? I've been using it and haven't had any problems. It smells kind of funky but I heard it helps.

Erica

I'm so sorry to hear of your loss of your beloved Grandfather, I will keep you, your family and your Grandmother in prayers🙏, perhaps he is still with you spiritually 👼

Happy belated anniversary AND Happy Birthday ((belated)) sending love and hugs 💞 and hoping your chemo today is kind and gentle with you my friend

You're in my thoughts and prayers!

Cookies, thank you so much for understanding. Husband-ectomy made me laugh. I can't think about a divorce on top of everything else right now. Maybe I'll find a counselor, too, but I tried a few years ago, and he walked out early. I know he loves me and loves our kids, but he is cut off from his own feelings, like so many men, and alcohol just perpetuates that. Anyway, I'm sorry you are going through this, too. Thank you, everyone, for your good wishes.

KnittingPT, so happy you are done with A/C ... I start Taxol/Herceptin/Perjeta on Jan. 7, and I'm nervous about that date because of the chance of allergic reactions. Through all of this, the unknown is what unhinges me! I'll feel much better once I know what Taxol feels like.

TallyLassie, I'm sorry you're so sick; I'm sick, too, and feel just as discouraged. All this and then major surgery to look forward to. We won't get our lives back until summer. I kind of envy those who have already done their surgery. My surgeon told me last week that one of my "benign" biopsy sites is shrinking during chemo, meaning it wasn't benign, meaning mastectomy. It's hard to get my head around that when I thought I could get away with a lumpectomy.

On the WBC counts: This page below helped me understand the difference between neulasta (stronger) and neupogen. I think your oncologist plays it by ear according to how you do. I am hoping not to have neulasta during Taxol because the shot ushers in terrible bone pain and muscle pain all over my body, just like you, WheelyGirl. It lasts for about two days, and Tylenol does nothing for it. http://breastcancer.about.com/od/lifeduringtreatme...

MidLifeCrisis, my oncologist assured me that while A/C lowers overall WBC counts, including neutrophils, it does not lower your lymphocytes, which are the types of WBCs that fight viruses like the flu. So that might be why your MO isn't worried. Normal range for WBC count is 4,000-11,000.

Can't wait to have a normal life again when I don't use words like lymphocytes and mastectomy! Oh to be normal again.

Do you mind if I vent? Remember how the system I am with was VERY slow in treatment? Like 3 full months before surgery and no consult with oncology while the tumor grew 200%? Well, now the new insurance company "lost" my continuity of care paperwork so I'm due from Round 3 on Friday. I have my driver, my plan, trying to breath and not panic or be nervous. There's a lot that it takes for me to be ready mentally for chemo and then replace myself in my kids' life for 10 days.

Anyway, the doc's office is closed for the next two days. The new doc, who thankfully even took my call since we haven't met yet, is suggesting that I receive treatment without authorization on Friday (because that's Day 22 so time to start again) and risk the chance that the new insurance will cover the cost (they are not obligated). The nurse said that my treatment while FDA approved is aggressive and it's possible that the insurance won't cover the $54,000 in drugs plus cost of facility and staff.

Let's see, delay treatment, maybe risk survivability or go to treatment and end up owing more money than I can even imagine? I really don't know what to do.

Wow, minivan, you do not need this stress! I think you are doing the right thing: stick to the schedule and go on Friday (though won't the doctors or nurses glance at your blood work first? They should!). Any insurance company will be reasonable. This is standard care, widely accepted. I am really mad for you! Is there anyone in your life who can be a bulldog and straighten this out for you? You should conserve your energy for your kids and recovering from chemo.

Sheeba, send a private message to Bonnie with your FB name, and she will add you to the private group. I just joined and it's great. And midlifecrisis, I hear you!

hi ladies,

I am catching up here on the boards>>>.

Erica, dear one, you are in my prayers with the loss of your grandpa, What a wonderful soul he is. You have memories to keep you for ever.

Cookies, you are also in my prayers. The counseling and outside help would give you some much needed support even if you dont have it with your husband. He needs to be there to support you but if he cannot you have to find support in other ways. You are stronger than you know and realize. Ask for help from friends. Reach out to friends and family. People you would never imagine are available to take you here and there. Just ask. The local support systems thru cancer groups are amazing. see what is in your area and reach out at your earliest convenience.

Metta, I understand about the alcohol thing. My husband also drinks daily and has his habit i wish he would quit. I am lucky he is supportive during all of this for me. In my heart of hearts i wish he would take care of his own health and stop drinking. He suffers depression too i think and has back, weight and knee problems too. He is nine years senior to me at 65. sigh. I have a hard time approaching him about quitting but it is alife long friend. Never any abuse to me but sometimes takes it out on my oldest son (23)...makes me sad. Enough of my own soapbox.... I love all you ladies here and am happy to be able to be supportive of all on our cancer journey together. All in all my husband is supportive and is also in pain as a caregiver too. He needs self care as well and I understand that.

Sheeba, send me your email if you havent already and i will send an invite to the FB group. Because it is a secret FB group you will not ind it in a search. That is the appeal to all who have joined it is that it stay a closed and private group.

Minivan, I am so sorry to hear about your troubles with the insurance. Stay vigilant and on top of it all and contact the insurance and start a dialog with them if you havent already. That can help enormously to be in closer connection with them so no surprises on the back end.

Happy new year and love to all....

minivan, that is a very tough situation. Are you trying to get this situated for TOMORROW or next Friday? If I didn't have the money to pay that bill, I would probably wait until I spoke with the insurance company to get a sense of how they make their decisions. At the very least, I would pour over the guide to benefits to try to tell for myself whether the treatment "should" be covered. Some insurances require pre-authorization so they could deny you based on that if you haven't done the proper procedure. What does the insurance person at your oncologist's office say about their experience with that particular company? (not the doctor . . they don't usually know all the intricacies of the insurance stuff) I would also ask what worse case scenario would be. Does that office write off the costs in similar cases (not likely) or go after you for the full cost if the insurance denies? Do they have a payment plan or discount for those paying out of pocket? I would want to know the full financial risk involved in the decision before going ahead.

Thanks Knitting! I finally remembered that I have a friend who is an attorney for a different health care system. So I called him. While he didn't have contacts in my new health care agency he couldn't say for sure that the chemo would be covered for tomorrow. No case worker assigned. So, if they truly wrote "urgent" (which I doubt because person #2 said person #1 didn't do that, and did I mention that I faxed the request on the 12th but no one at the healthcare place knows where it goes so it wasn't "received") then the 72 hours starts Friday at 8am central time.

I'm worried that waiting up to a week will effect my prognosis, but I am terrified of such a big bill and the fact that the health care system and the insurance company won't say anything close to "well, I can see if you'd like to live another 10 years year keeping chemo on track is important so we'll cover it" makes me too nervous to think about going on Friday. All I need is to be vomiting next week and get the call that it was denied.

Here's hoping the new onco will see me tomorrow and the gal with insurance approval in the new infusion center is as good as she says she is!

Mini van - I agree with knitting - call 2x per day if possibe- once in AM and once in PM - see if you can get the same person each time - that may help - but very hard - someone else mentioned to speak with oncologist about taking week off - lots of folks have done this due to poor counts, infection or family obligations but see what MO thinks. Also does your MO and their staff know about the insurance issue? Can they help? Is the MO new? Have you seen them yet? My heart goes out to you - I am sorry

Janiner, I just finished mine before Christmas (a/c). I start taxol next Friday. I'm doing weekly for 12. What are you doing? It is nice to finish one step of the process but I'm finding myself back in anxiety mode. . . what's it going to be like? Is it going to be worse than a/c? Am I going to be able to continue working? Ha! I'm learning to deal with the "unknown" and just go day by day but it is hard!!

Minivan, were you able to get your insurance stuff figured out? I hope that they took care of everything.

Knitting and tennis.

so amazed at both of you have worked through AC. Truly truly so amazed. There is no way in heck that I could have done that. I'm so hopeful that the taxable will be less than the AC so that I can go back to work hopefully. I'm on the same plan as you, 12 weeks of taxol. I don't have a starting yet date but should be two weeks after this Friday give or take. Oncology was too busy to schedule appointments for me. I do have an appointment with my Onc between now and my taxol appointment. I'll post when I get that. I totally understand about the anxiety part. Never seems to go away much. They have have had a hard time every time when it comes to putting that darn needle in my port. They never can find it the first time. I get poked at least two to three times and have several nurses come by to try to find the right spot. So now I get extra anxious knowing I'm going to once a week its like seriously can you find the port the first time. So a lot of my anxiety comes from that fear. my hope is with taxol the side effects of major chemo brain, stomach disorder, and plain old severe tiredness, goes away with taxol.knitting please let me know how your first round goes if you can. I know the first round is pretty tough just because they stalk you up with benadryl and steroids and everything else they can give you in preparation of any reaction.

Thanks for asking. My new hospital is amazing. I saw the new oncologist Friday and I finally got a prognosis! Then infusion was able to get me in for Sunday chemo- so it was only a two day delay! Yeah!

Hi...question for those going through TC chemo. Do you happen to know what dose you are receiving for each? I believe the average dose of Taxotere is 60 -100 mg per 3 months. And the average dose of Cytoxin is 600mg. I could be wrong. But just want to see if my dr has me on too strong of a dose and that's why my side effects have been so bad.

Metta, I start Taxol on Friday too. My oncologist says that taxol is "a breeze" compared to A/C. However, the PA told that they do have people have a reaction sometimes so they are making me start the infusion early in the day the first time just in case. If I get a reaction, then they pump in some benadryl and slow the infusion rate and usually nothing more. I sure hope it is as easy as they say. They also warned that T can cause more constipation than A/C so I"m going to be ready for that as well as for the neuropathy. We will have to compare notes this weekend.