Starting Chemo March 2015

ninjamary

Sloth - What a jackass your RO is. I'd write a letter to a higher up in the hospital. Not sure anything will be done about it, but at least it will be on record somewhere. They get enough complaints they might terminate him or his contract.

My MO is actually growing on me. I had a really good conversation with her yesterday. Still not a fan of the nurses though. Geez...did I post this earlier? I swear my brain/short term memory is shot.

ThePrincess

Ladies - someone mentioned low HGB as a reason for transfusion? What is considered that low? I just checked my # from yesterday and it's 9.3?

Trvler

I don't remember if you posted it, Mary.

I am firing my MO. I have a consult appointment with one and I might see another one in the same practice. I have complained several times about one nurse at my center who has the sensitivity of ….well, I don't know what. So far since, she hasn't been near me.

Trvler

ACtually, I don't think she is even a nurse. She is the $10 hour person who escorts you to the room.

Jackbirdie

Princess- the magic number is usually 8 or lower for a transfusion. Good luck and I hope you don't have to go there.

Allison, I'm glad to hear you're looking around for a new MO. I know you haven't been happy and confident, and you need to be.

Trvler

I went for a mole check at the dermatologist the other day since I had a couple of new moles. I am high risk because I am fair and had a lot of burns as a child. I didn't want to die of skin cancer because I was so busy recovering from BC. The derm was more compassionate than she is.

Jackbirdie

I love my derm too. He is hysterical. I went for a check recently too, as my whole family and I have had skin cancer. My younger brother died 5 yrs ago from a metastasized melanoma. Another brother has hada melanoma. I've had about 5 basals and one squamish sp? burned off and had a large basal on my face near my eye that he surgically removed. The incision ran about 5 inches down my face, but he did a great job and you can't see it now.

Anyway, it is extremely important to be checked regularly, especially if you are fair. I'm glad you brought this up, Allison. Being from the baby oil tanning generation, we did a lot of damage when we were younger.

I told my derm this last time that I'd come and paid my $35 copay, not for the exam, but for the laughs. I was down because of the whole bc dx and tx, etc., and needed some entertainment. He did not disappoint. This guy is a great doctor. He is very smart, doesn't miss much. He send his slides out, but also reads them himself. He's not a plastic surgeon, but where he worked on my face, you cannot see it. But he also gives great advice about preventative care, is easy to talk to, and is a total crack up.

Just sayin'. It's possible to be a doctor and a human being at the same time. Someone you actually like to be around. Allison, my wish is you find someone like this for your new MO.

Lovemylab

princess...I posted on low hgb. I was 9.5 and he offered me a transfusion. I was shocked as I never heard of transfusing above 8... Like Katy said, that is the magic number. Maybe he just wanted me to know it may be in my future if it keeps dropping!

ThePrincess

so does the hgb go down on taxol or is this the remnants of the last Ac treatmenrt

Jackbirdie

Princess- it is probably the taxol. Anything that starts with tax.... I think, oh yoohoo, SpecialK????

Jackbirdie

hair check this morning- it looks like a brittle stubble, but is sctually pretty soft!

This is a picture of my head one day prior to TC #6

eheinrich

My doc also doesn't do scans or anything post chemo. Makes me nervous. I know soon we will be out living our lives and the fears will fade, but not yet. It would be nice if they did something - even just ultrasound my boob hole - every few months: maybe one after 3 mos, one 6mos after that, etc. Just to confirm that we are well, that would let the fear fade.

BBwithBC45

ThePrincess, my hemoglobin kept going down from Taxol. The lowest I've been was 9.4, but never was there any mention of transfusion. I was and still am taking iron pills that MO prescribed. Hgb is slowly climbing back, but not quite there yet.

Jackbirdie

E- "boob hole" LMAO.

I am sorry for the worries. They are going to take a while to get over. But I'm glad you have your tongue stuck firmly in your cheek.

Today is my last day of not feel good, but feel ok, before my very last chemo! I think even though it's not too sunny, I'll take Jack the Wonderdog for an off leash extravaganza on the beach! Tutti goes to the vet for her first exam, shots and worming too today. There's a great beach nearby the vet that Jack loves called Whiskey Run.

shaz101

omg katy...you have hair!

Sloth your RO needs firing.

Ive taken myself away for a few days to chill out before everything ramps up again. I feel emotionally drained. I hardly left bed today.

I just want my life back!

SueH58

Katy - that's a lot of hair!!! I'm surprised it starts going back while you are still undergoing treatments.

I have felt really drained the last day or two. Today I'm a bit headachy. I'm 2 weeks post my last treatment. Do you think I need to go in for fluids? I'm drinking as fast as I can!

Lovemylab

My hgb never went this low on AC so I guess it is the Taxol.

Katy you are getting hair and one more chemo... Congrats! A walk on the beach to celebrate, priceless!

The rest of us well, hang in there everyone!

Maureen

rleepac

My BS has ordered a post-chemo chest CT (because I had a little blip on the first one), breast MRI, and mammogram (which I think is useless) to be done before surgery. I'll have those about 2 weeks after my last chemo and 2 weeks before surgery. I will also meet with the MO at UCSF to discuss what hormonal treatment is recommended for my future. Gee...can't wait - I will have 7 appointments over 2 days at UCSF. YeeHaw! I'm bringing snacks and a pillow for in between appointments.

Trvler

Bekah: What kind of surgery are you having?

SueH58

Theresa, I don't mean to be nosey, but why did you get neoajuvant treatment vs. surgery first? I'm always so curious as to why one is done vs. the other. I had forgotten you hadn't had surgery yet. That'll be the easiest part!

Trvler

I can't answer for Theresa but I was told it is becoming more the norm to have neoadjuvant chemo and my doctor told me it makes for better surgical outcomes. In retrospect, I don't know how I feel about it because still knowing I have cancer in my body and worrying about it is very hard.

Italychick

SUeH58, I have done all the surgery I am doing for now. I guess I was very lucky with my surgeon. I went in for an excisional biopsy because I had a Bi-Rads 5 rating and I didn't want to get poked and biopsied and stabbed a bunch of times. She did such an awesome job she got everything out the first try with wide margins. I was prepared to have to go through a mastectomy, but after every scan known to man, my MO said that because my outcome is so good, she would just monitor every three months for right now. Sorry I was confusing. I guess they aren't used to people having an excisional biopsy that becomes a lumpectomy that becomes wide margins with no node involvement. So even though I could still go through a mastectomy, the surgeon, MO and RO have all said it would be overkill.

I just got lucky that I had such an excellent surgeon. So no biopsies, nothing. Just the one surgery, then the chemo, and now Herceptin for a year. My surgeon also did the side of the nipple cut, and I can tell you, from a distance you can't even see the scar. The one under my armpit from the sentinel node biopsy is much more noticeable.

I will tell you that if anything comes up on a future scan, the girls are gone and I will get barbie boobs because I'm never going through this stress again.

pboi

After seeing the discussion on supplements/antioxidants it upsets me that providers cant agree on some basic things one way or another. I know research is lacking in areas, but what are we supposed to do?! Can I trust my MO fully to know what's best? After all he is just one person. This is why I love coming here so much, it helps to see what others are doing, and if my MO had other opinions or way of doing things you can bet I will ask why!

I along with many of you will have no post-chemo scans. I wish I could though.

Will be 2 weeks pfc tomorrow. Very very very slowly I am feeling better. My neuropathy started very late, maybe Taxol #10, very very slowly over the past 2 weeks it has been getting better, but surprisingly yesterday it started to get worse, WHY?! I'm going the wrong way!!!

Katy - wow lots of hair! And thanks for posting the pic of Jack in Tuttis bed, so cute!

Bekah- 7 appts in 2 days, that's a lot. Hope all goes well with them.

PB

KBeee

For smaller tumors, surgery is usually done first. For larger tumors, chemo is done first. It allows shrinkage of the tumors and also allows the MO to see if the chemo is working or needs to be changed.

Most MOs automatically transfuse at 8.0, but between 8 and 9.5 or so, they will if symptomatic (though this second one varies from one MO to another). 8.0 is an automatic ticker to transfuse.

Trvler

Kbee: Were you on blood thinners at all? I attributed my nose bleeds to those, not the chemo.Of course I could be wrong.

Trvler

Pb: I have learned WAY more here than from almost all of the doctors I have seen throughout this mess. But I don't think they keep up on the supplement stuff. I had to ask about glutamine and b6. My doctor never mentioned it to me. I was just talking to the nurse yesterday and she said good I was taking the stuff. But I have no idea when/if my doctor would have even mentioned them to me. Maybe if I had told her I was having neuropathy? BTW, she is getting fired.

Trvler

Katy: Great on the hair!! The only thing I have up there is dandruff. YES, still have it!! lol

KBeee

Allison, I am not on any blood thinners. I am not sure why I am getting them. My platelet levels are great. Started one side, now both. Luckily they are not too bad... Mostly just first thing in the morning or when I blow my nose. Annoying ones, but not horrible ones (yet).

Jackbirdie

Look what came in the mail today! Do you remember Sharon posting pics of this scarf she made from yarn she spun from her own sheep then wove this on her loom in probably the only hours she was free of those horrible migraines and nausea? I dropped the biggest hint in the world. She must have mailed it the same day. My colors too! What a fabulous, thoughtful gift, Sharon. Thank you! It's s magic scarf. Can make a bald woman beautiful!

SpecialK

I hate to tell you skin cancer peeps that chemo has accelerated my basal cell lesions - I have had half a dozen removed in the last year alone - and probably 30 total - I have lost count. I had the first one at 35 - which was almost 25 years ago, I have not been out in the sun since, lol! All of the most recent have been on my back and three of them have been wide excision removals with 3 inch incisions and a cubic inch of flesh removed, one of them was a recurrence - in essence, a lumpectomies on my back.  Two others have been electrodessicated - so I have three long incisions and what looks like two bullet holes.  My husband says I look like I was attacked by a bear and then shot.

Regarding transfusion - yes, a Hgb of 8 will buy you a ticket to transfusion - as Kbee said - also symptomatic above 8 - which would be dizziness, lethargy, confusion, and fatigue that makes movement difficult.  Any chemotherapeutic agent, and also Herceptin, can drive your Hgb lower.  Eat protein, leafy greens fortified cereal, etc. to bring up your Hgb.  I ate a lot of burgers and steak right as chemo ended.

Neoadjuvent chemo is offered to Her2+ patients who qualify for Perjeta as it is only currently FDA approved for this use in early stage breast cancers.  Some oncologists have been able to convince insurance companies to pay for it adjuvently, but technically this is off-label use.  Neoadjuvent chemo is also offered to Triple Negative patients because it is critical to know if it is working since there is no adjuvent hormonal treatment available.  Also, surgeons recommend neoadjuvent chemo is there is a desire to shrink a mass for lumpectomy or to achieve cleaner margins.