TRIPLE POSITIVE GROUP

TonLee

She might take it more serious if you said, "Before this I could do 100 lunges and 100 squats per session."  lol  (My Onc and Cardiologist are always interested when I mention a significant performance change.)

My left elbow and knee (runner's knee, ran long distance for decades) are very painful.  Sitting here right now they ache.  I can't reach out and pick up anything heavier than a soda can from a relaxed position (like sitting on the couch).  I can still lift with that arm, but I'm generally standing with good posture so the arm muscles do the work, not the joints.

And while I'm complaining.  I'm PMSing this week and my TE is so painful I can't sleep well.  Everytime I roll over it is SO painful I wake up groaning....I don't know how I could possibly have "breast" tenderness when THERE ISN'T A BREAST THERE......Actually I think it is more likely fluid retention.  I have lots of fluid retention with PMS.

Oh well. 

Lago, I'll let you know how it turns out...gotta dig out my food processor.

lago

Well I am only holding 5lb pound weights in each hand. I used to be able to easily do them with 7 and 10lbs weights in each hand before BMX Seriously this is liveable and not forever. Just hope it doesn't get worse.

dancetrancer

So glad to read about so many of you having the higher doses of Vit D3 recommended by your onc. It makes me feel more comfortable with my onc's recommendation.  He has recommended I think 2000 mg a day (I have to follow up with the nurse).  Even though my numbers were "normal" at around 35, he says he likes bc survivors to test in the high 70's or 80's.  He checks bloodwork regularly to assure response and also to assure you are not moving in to the toxic range.  

Omaz

dance - I am also doing 2000 D3/day per onc PA's recommendation. Blood levels started at 30, then after 3 months made it up to 33!  I am hoping for 36 this visit - LOL!

lago

Last time I was tested I was 79! Not bad considering I was single digits.

dancetrancer

Lago, wow!  That is awesome!  You've got to be feeling some protective power from that kind of number.

Omaz, hope you get even higher than 36!

I won't be starting my D3 til after rads since RO told me no additional supplements beyond a multivitamin.  

Kitchenella

|What exactly causes the joint pain?  Is it arthritic changes or something else.?  I've had arthritic knees for years and, thank G-d, have been able to keep the pain under control mostly with mild resistance exercises. Once in a blue moon I have a bad flare up and have to take one of those strong meds for maybe 5 days but once it calms down I am fine with just movement.  I havn't had a flareup in over a year.  And for sure keep moving.  Stairs are bad but regular walking and non vigorous biking should help. 

Peggy 

TonLee

Omaz,

Your D3 #'s sound like mine...I've been taking 2000 D3 a day, PLUS the D3 that comes in my calcium (300 x 2 a day) ...so 2600 a day..and my D3 was 57 Thursday.  I know that's normal, but seriously, I take a LOT of it, I thought it would be higher.  Unfortunately I don't have a baseline D3 #...Onc never checked it.  My endo checks it even tho he poo-poos the link between breast cancer and low D3.

It is supposed to be warm here this week (in the 50's!!) so I hope to get out and enjoy it a little bit at least.

Taking Finch the cat to get declawed this morning.  Hate to do that to the little guy, but he's ruined my last upholstered chair!  Some days that cat is more work than both my kids together!

(But he's still my baby

laolson18

So, my Mom had her follow-up mammography and ultrasound, and she did not need another biopsy and they did not see any lymph nodes involved.    Now we just wait for the surgeon consult for later this week.  I am hoping surgery will be next week!

laolson18

Ok, not so good of news.  My Mom's pet scan came back and one lymph node lit up near her liver, so now she has to go for another type of scan.  They said it is not in her liver, just near it.  Has anyone experienced this before?

shore1

Laolson, hope it turns out ok. I don't have much experience with scans, but from all I have read over the past months, it seems things light up that turn out to be not cancer related quite often.



Anyone taking fish oil supplements - I can't find one that does not contain soy. Im trying to avoid soy. Does anyone know of a brand without it?

lago

laolson there can be false positives all the time. That is why they keep scanning my liver and yet nothing changes. I'm not sure what they mean by "lit up". Did they see a lesion? Is it possible that the lymph node is just fighting some infection.

You need more information. Unfortunately this is what it's like at the beginning. The glass is always half full & half empty with this disease. hang in there. The road is bumpy.

laolson18

I will call the nurse tomorrow, but according to my Mom, it is the lymph node next to the liver that lit up, not the liver itself.  She specifically asked the nurse if it was in her liver and she said no, just that the lymph node next to her liver lit up.  What is strange, she did not have anything else light up.  Wouldn't one or two lymph nodes near her original tumor light up if that was the case?  Everything else seemed fine.  My mom is just relieved that it is not in her lungs and bones, go figure!  Will the CAT scan reveal anything more or just confirm what they saw on the pet scan?

lago

I would assume it will give more information regarding what this is or isn't… it could be a false positive. Just not sure exactly what it is if anything at all.

laolson18

This is going to drive my crazy until Friday, which is when her CT scan test is scheduled.  Why is your doctor questioning your liver?  Did they see something prior to your surgery?

Anonymous

Hi all,

Just trying to keep calm before my lithotripsy (kidney stone bombing) tomorrow afternoon. What a way to celebrate my one year BMX anniversary! Herceptin in the morning, the the kidney stone thing in the afternoon.

For you pizza lovers....Trader Joe's has fresh premade wheat pizza and Whole Foods has the same only it is whole grain. I like it a little better. I also bake it a little before I put all the stuff on as I thought it didn't always cook too well with the good stuff on it.

SpecialK

fluff - hope all goes well tomorrow.  I have a morning appt. to lose my drain and see if they can get this allergic reaction under control.

Anonymous

SpecialK...meant to tell you....hydroxyzine, generic for atarax, is a great anti-itch pill. It is a strong antihistime with some anti anxiety stuff also. My NP prescribed it when I had my major hive attack and for the foob rash I had the other time. I usually only took it at night as it knocks me out, but it really helps a lot...more than benadryl I think.

SpecialK

Thanks - last time this happened they had to use steroids.  Not sure if PS is a fan - BS handled it last time.  I have taken Atarax previously - I am prone to this.  I actually thought I had some, but couldn't find it in my giant box of random pills!

laolson18

ok, so I spoke with the nurse today and they see an abnormal lymph node outside the liver, so they want the CT scan to rule it out.  There is no cancer in the liver, thank god.

TonLee

Good luck today Fluff! 

Moonflwr912

Good luck fluff, Specialk, hope your reaction goes away soon. Laolson, once again, you just have to wait and see. Don't borrow trouble. Much love and small SEs.

dancetrancer

fluff -best wishes on your procedure today!

lago

Fluff so maybe that's what I was doing incorrectly with the TJ pizza dough. I felt it was mushy when I made it. Good luck today. I hope they get to the bottom of this already.

Laolson they saw lesions on my liver in the CT scan I had done before surgery. The believe they are cysts but my onc wants to be sure. So far after 3 scans in 1.5 years there is not change… so that's what these appear to be. Not sure if she will scan again in a year.

laolson18

Thanks Lago.  I know they are just being extra careful, which is what you ultimately want.  I am actually glad she was able to get the PET scan before surgery, since at least we now know exaclty what we are dealing with.

coni111852

hi ladies,

Im currently going herceptin and taking letrozole...however my hair is very thin...I just wanted to know if anyone else is taking the same and has the same side effects.  I will be going to dermatologist for the hair....just want to know if anyone is taking anything for it...right now im taking biotin and biosil, for hair, coconut oil, you name it (natural im trying)...

bucky317

fluff good luck with your lithotripsy tomorrow!!

special k hope you get rid of the rash soon!!my best friend is highly allergic to the adhesive/latex also. It was a pain in the ass after her biopsy and bmx.

SpecialK

bucky - I have had the adhesive allergy for a long time - I have all kinds of tape warnings on all my records.  Now the PS thinks as of today that it might be the Betadine that they wash you with in pre-op.  He says there is something else they can use in the future.  So I had Betadine with adhesive over it - fabulous!  Drain is out and got a scrip for Atarax, so progress!

dancetrancer

Those of you who still need mammograms may find this up and coming new technology of interest:

Molecular breast imaging 

Key issues

• Molecular breast imaging (MBI) is a new nuclear medicine technique that employs small semiconductor γ-cameras for high-resolution imaging of the breast.
• Imaging technique is similar to mammography but only uses a third the compression force.
• Current studies employ Tc-99m sestamibi and provide functional images of the breast that are complementary to mammography.
• Early results indicate that MBI has comparable sensitivity to breast MRI, but at a fraction of the cost per procedure.
• In a screening study of women with dense breast tissue at increased risk of breast cancer, MBI detected three times as many tumors as mammography while maintaining a lower false positive rate.
• Recent work has been aimed at reducing the radiation dose from MBI. The goal is to reduce the effective dose to the level of screening mammography.
• MBI is complementary to anatomical techniques such as mammography, tomosynthesis and ultrasound and will have an important role to play in the diagnosis of breast cancer. 

Anonymous

Had my seconf to last herceptin today. Are you all aware that genentech, the herceptin company, has a copay assistance program? Totally missed it and it is not retro, but the basic qualifications are they will pay 80% of the copay up to $1500 if you earn more than 100,000 and up to 4,000 if you make less. I gave the paperwork to my onc today and told him he needs to be giving it to everyone to at least apply.



Lago, i went through three pizza crusts before I read a note on a recipe site that someone said it helped. It really did.



Got my ONC the non tester, to promise that in one year, he will run the CTC test and a couple other cancer blood tests. He still doesnt want to do the PET scan, but says he will do that or ct, if I push him. Lol



Also decided to see if insurance will cover the BRCA test. My ob/gyn says he sees no need for me to have ooph or hsto unless it comes back positive. So, if we can get insurance to cover the test, then I am in.