TRIPLE POSITIVE GROUP
Comments
-
Thank you for your thoughts. It helps me very much to know that others are doing well on Lupron and AI. For me Tamoxifen did not work according to the Doctor that is why she will now try Lupron and AI.
I also had a second opinion from a different oncologist and he is sugesting the same Lupron and AI.
Hugs to you all,
Thanks
0 -
Forest: I did the ElastoGels (and had a port)....now, I could have done them myself but WAY easier and quicker with the changes if you have a helper. My hubby was there with me. BTW, I didn't lose my eyelashes and I think it is (1) maybe I wouldn't have anyhow or (2) because the entire area was cold.
Someone mentioned about Scalp mets - that has been disproven and there are tons of studies/reports out there. I'm thinking if there was a big risk for scalp mets, the major centers wouldn't be offering the caps. My onc thinks they will be FDA approved in the near future.
0 -
hi all
bone scan tomorrow...prayers/good thoughts, vibes needed
ugh
question - are expanders ok when you do a bone scan?
0 -
LeeA,
In case you want to understand the white count issue with chemo better, here's a little tutorial for you.
It is not just your WBC.
The number you want to examine is your ANC (absolute neutrophil count). ANC = white blood cell count X % of granulocytes (they are also called neutrophils). There is a more complicated formula, but this one gets you close enough and is the one I use.
For example - say your white blood cell count is listed as 3.0 K/uL (scale is important - so look and see how yours is listed) and your neutrophil/granulyte % is listed as 25.2%. You convert the WBC to 3000, multiply that by .252 and get an ANC of 756. This would be Grade III neutropenia.Grades of Neutropenia
Grade 1 = 1500 to 2000 = slight risk of infection
Grade 2 = 1000 - 1500 = minimal risk of infection
Grade 3 = 500 - 1000 = moderate risk of infection
Grade 4 = < 500 = severe risk of infection
Your onc may be considering delaying your chemo if he thinks your white count is too low and needs to rebound before the next chemo.
0 -
rozem - I had a bone density scan and two PETs done with TEs in - I think the problematic scans are ones that are magnetic, like an MRI.
0 -
Best wishes Rozem. Thoughts are with you!
0 -
Rozem:
and the only issue with expanders is MRI because there is a big strong magnet and your TEs have metal in them. I have this image of you sticking to the MRI by your TE's and spinning around. Not good.
I too heard about the scalp mets thing but I don't think breast cancer goes to the scalp.
LindaKR mine came back great then fell out again but not as good I assume because of Anastrozole. I do paint Minoxidil on them 1X a day and they did improve a bit.
0 -
The cold caps may be contraindicated if you have a systemic kind of cancer, like lymphoma. Arlene, I lost quite a bit of my eyebrows/lashes, so maybe you got lucky there. Not all of them though so who knows.
Rozem, good luck tomorrow!!!! I hope they get a really clear picture of a whole lot of nothing!
0 -
Rozem, I too had bone scan with TEs. Thinking of you & hoping you can relax a little after the scan.
0 -
Rozem, you got it! Prayers, good thoughts, good vibes and hugs sent.
0 -
I always thought I would be devastated if I had to loose my hair, but it actually was not bad at all - I wore scarves and light weight cotton hats by http://www.hatswithheart.com/ You can pretty them up, and some others that my mom found at a MX bra store by her. Loved them, wore nothing on my head at home, and sometimes in public, and am keeping my hair short, never in a million years thought that would happen. I guess what I'm saying is I was really surprised that it ended up not really bothering me - kinda weird
0 -
Linda, you are made of stronger stuff than I!
0 -
Thanks cypher, but I've read your story, I don't think so. We all have strengths in different areas.
0 -
UCSF is doing another Cold Cap study sometime this year to gain FDA approval. When my DH sent an email to one of the doctors doing the study, he got a lot of information on their previous study from last year. 68% overwhelming recommended the Cold Caps and not one of the individuals in the trial required a wig. I am hoping for FDA approval so maybe insurance will pick up the cost or there will be grant money to help others that want the opportunity to use them. It's. not for everyone, but if someone wants to try them it would be nice to know that it can be affordable.
0 -
It is a nice option, and very interesting concept.
0 -
rhonda - I hope that FDA approval means that insurance will cover cold caps for some but FDA approval does not mean that coverage is a forgone conclusion. Mammaprint (similar to Oncotype DX) is FDA-approved, and my BS sent one of my biopsy samples off to them for genetic assay, hormonal receptor status and Her2 status info. He did not get a pre-approval from my insurance company first. I ended up with a bill for $5,000 because my insurance company considered it "experimental" and denied payment. Fortunately I did not sign anything that said I would be responsible, so I did not pay the bill either. Insurance paid a small fee so I requested an AOB form from the Mammaprint folks (Agendia Labs) filled it out and faxed it back and they were left with no choice but to accept that as payment in full - they got $61 and had to write off the rest. Interestingly, they have paid for all other treatment, no questions asked - and there has been a lot of it!
0 -
SpecialK,
Good point. I could see insurance saying it is cosmetic and not medically necessary.0 -
rhonda - My insurance did cover payment for my wig (or "cranial prosthesis" I should say!) though, so who knows? I wonder if insurance coverage might be complicated by oncs unenthusiastic endorsement though.
0 -
dancetrancer - thank you for that info about how to read the WBC on our bloodwork. I am a numbers gal and that helped me to understand a lot. I immediatley got out my calculator and figured out my grade!
For those of you stressing about hair loss, I saw this on another thread yesterday. A little trite I know, but maybe it will be an ancouragement to someone. (being bald still sucks though!)
Breathe in, breathe out, the hair will come back, the cancer will not!
0 -
rozem, prayers and well wishes on your scan!
dancetrancer, great information about the WBC. Thanks so much for posting it!
tonlee, I've bookmarked your post about eating (and not gaining weight) during chemo - thanks for that!
cypher, thanks for your comments/suggestions on that as well.
linda, I'm going to try to convince myself that I crave protein (like you did) during chemo. I wouldn't mind coming out of this a few pounds less (but definitely don't want to be several pounds more).
bren58, good saying to help keep things in perspective!
0 -
Rozem, You are in my thoughts and prayers today. Hope your scan is clean!!!
0 -
Roze,
I'm lifting you up!
0 -
Rozem: Thinking of you!!
0 -
kayb - sorry about your friend! It really irritates me that not only are we dealing with BC but then we have insurance headaches on top of that - who has the extra energy? Anyway, an AOB is an Assignment of Benefits form. It states that the insurance payment comes to the lab, hospital, etc. instead of the patient. In my case because my insurance paid some random handling fee - and because Agendia said we will accept whatever insurance pays as payment in full - that is all they got! My BS was really the at fault party because their surgery scheduler/insurance wrangler failed to get pre-approval. EVERYTHING with my insurance plan requires this - they would have known in advance that the Mammaprint would be denied. The thing that saved me was that I had not signed anything specifically for the Mammaprint responsibility. She also failed to get a pre-approval for the plastic surgeon requested by the BS, and I didn't find that out until the Wednesday before my Monday surgery when I showed up at his office for the consult! I was mighty pissed! I left withut seeing the doc (consult would have been out of my pcoket) and went over to the base and got the pre-approval myself. I was not happy having worked all day at my own job, then I have to do someone else's job! As far as your friend, if her insurance gave approval in advance I don't see how they can now claim they will not pay the bill. Has she talked to the Genomic Labs insurance coordinator?
0 -
On the hair subject - I found this wonderful book at our local library, then my daughter gave me one as a gift - I think that everyone should get this book at diagnosis - takes the fear out of losing your hair - it's called Turning Heads:Portraits of Grace, Inspiration, and Possibilities
http://www.amazon.com/Turning-Heads-Portraits-Inspiration-Possibilities/dp/0977007405
I love the book, I still get it out and read the inspiring stories!!!
0 -
Rhonda: Remember the days when chopping off the breast was acceptable without providing new breasts - it was considered cosmetic and now look how that has changed. Cold caps aren't for everyone but I would do them again and they kept my mind off my treatments because I was so busy the time whipped by. I think the option should be there for those who want to use the caps. Enough from me now on the caps.
Wow, SpecialK: You have to be one step ahead all the time with these insurance companies. I had a little skin biopsy and ended out the lab the dermatologist sent it to was out-of-network so I had to pay. Next time, I'll find out who they are sending it to. My insurance pays out of network but it requires a separate deductible.
0 -
Rhonda, that would be great. It would also be great if the company priced the rental lower – they seem rather overpriced to me but perhaps they need more users to get sufficient economies of scale to bring the prices down. In terms of it being cosmetic, I wonder – I’d be interested to see a study that charted activity levels, levels of self-reported emotional distress etc. on women who used them and who didn’t. Of course, the true study would be those who wanted them and couldn’t afford them or use them for other reasons, and those who didn’t want them. It made a big difference for me.
Linda, thanks. Some days I don’t feel so brave.
SpecialK, I was told that the oncotype tests were pointless if you were her2+, so maybe that’s why your ins co denied payment? What was it that the mammoprint test showed in your case?
I have a question for you ladies – I am almost done with rads (the 23rd, yeah!!!) and MO put in for a CT scan of my abdominal area and a bone scan, but not a pet scan. I called to make the appointments and was speaking to one of the techs. She said it’s best to wait at least a week in between doses of radiation (ok) and that the pet scan gave you more radiation but was a more sensitive test than the CT scan. She also said it had a shorter half life even if it was more radiation. She wasn’t sure whether a pet scan was useful for bones or whether it was just for soft tissue. This conversation was late this afternoon and I know MO wasn’t in anyway, so I thought I would ask you oh so helpful women before formulating my email query to him. So – what have you all been getting and why, etc.? Thanks!0 -
Forgot to mention today is 2 years since my last chemo. Seems like ages ago. I never thought I'd have my nice shiny hair back but I do. Granted not long anymore but still nice and shiny.
0 -
lago, that's a big milestone - - - congratulations!!
The most important date in my iCalendar right now is the date that I anticipate finishing chemo. I have the Herceptin doses charted out until late September when they'll need to be adjusted for a trip we have planned but TheDate™ that stands out is the sixth chemo date. I'm hoping the schedule doesn't get off track because of the low white blood cell count (this from someone who never calendars out ANYTHING!).
---
Today is day 17 (counting infusion as day 1). I noticed for the first time this morning a large amount of hair coming out. I was kind of hoping that my head had been left numb enough from cosmetic surgery twelve years ago to keep some of the hair loss at bay (this was my silly pipe dream/fantasy based on nothing and I knew the inevitable was, well, inevitable).
After watching hair fall all over the place as I was eating lunch I decided to go get it cut (what prompted the thought was looking across the parking lot and seeing a hair salon - big light bulb moment). So, I had my first hair cut since August 31 - and it's shorter than it has been in years...
My stylist is 90+ miles away so I just went to Fantastic Sam's and told the stylist the situation and showed her two photos. The first style was a bit longer and she said that if my hair was falling out I should stick closer to the second photo (shorter style). However, as she was cutting she decided to make it closer to the first photo because she said I wasn't losing any more hair during the cut than what most of her other clients lose (i.e. clients who haven't had chemotherapy).
I wasn't going to go the short route before going *gasp* bald but now I'm glad I did since there will be short hair before there will be long hair again (my hair was a bit past my shoulders).
Then, I went to Nordstrom's and bought the Anastasia brow kit. They had a special promotion/sale which was unusual (according to the salesperson).
And I had fills today for the first time in quite a while (breast fill-ups, that is). Fortunately, I no longer have to wear this netting thing (which was holding up a Telfa pad over the right breast and being held in place by a Bikini strap). Anyway, every little thing feels like a victory, which is one of the things I've noticed most since being diagnosed with BC. Now I'm down to a regular sized Band-Aid™ over one teeny red spot in the stitch line (the stitches on the right side came out today as well) so three little victories: stitches out (check), no more netting tube top thing (check), no more Telfa pads (check).
Another day in the breast cancer wars. And we had good weather for waging war! 82 degrees!
I hope everyone has a great weekend!
0 -
Lee, what's the Anastasia brow kit (for those of us who are... um... cosmetically impaired)? Also, now that you've trademarked TheDate™, do I need to pay you royalties if I use it? Just checking. I don't want to interfere with the intellectual property rights of a sister...
lago, happy anniversary! May your shiny hair last and last and last.
0
