TRIPLE POSITIVE GROUP

Hi!

I was on Fosamax for six months before my MO figured out how to get my insurance to pay for Prolia. I didn't really have any problems with it. You pick a day of the week that is convenient for you, and you take your Fosamax with a generous amount of water right after you get up. And, then you're up. Lying down after taking Fosamax is a no-no because it can harm your esophagus. After 30-45 minutes, you can eat. And that's it.

Some women have stomach problems (e.g. nausea) after taking Fosamax; others complain of diarrhea. I didn't have any problems.

I'll be going for a dexascan in June to see whether or not Fosamax-Prolia has worked. Hopefully, my bone density will have improved.

Good luck!

Nanette7fl;

I hope that you can stay on the Kadcyla it was a life changer for me. I have had a new development that I need to research now. Kidney problems and if they are related to the drug treatments I have had for the last 2 years that interrupted the effectiveness of my Diabetes medications.

AngelsGal57

Those of you who kept your port how much are you being charged per flush? I was charged $462, when a lab draw is only $199. This makes absolutely no sense to me.

Thanks Elaine. According to several sites it should be around $160, this is something I'm going to fight.

PhoenixCruiser, I finished Herceptin May 2018 and still have my port. I have it flushed every 4-6 weeks, costs me $51.89. The port gives me no problems and not really in a hurry to have removed. I have used my port during my colonoscopy and this month twice during cataract surgery.

Hi AngelsGals47. I had 7 months Herceptin/Taxol and 3 Kadcylas. Also have Diabetes. Tried Letrozole for 8 days but it totally messed up my blood sugar. So far my kidneys are OK but I refuse to take any meds that make the diabetes worse. It's under very good control with a Dexcom 6 and careful diet. Also losing a lot of weight, 113 pounds lost so far, 68 more to go. I've had to stop Kadcyla because neuropathy pain has become excruciating. Terrifying. Chemo was killing me. So many side effects from all the 'treatments.' Trying a lot of natural supplements because I cannot go further with chemo / ai. This is not fun. I have a Palliative Care intake next week.

What about the Paraguard IUD? No hormones, just copper. And it lasts for 10 years I believe.

Pennyk, my first to-do when I was diagnosed was to have my Mirena removed. I was highly ER/PR+ and the breast surgeon and oncologist insisted it be removed ASAP. You might consider having a consult since hormones are our enemy. I take Arimidex now and call it the estrogen killer.

And hello to everyone. It’s been a while since I posted. My diep reconstruction went great but my post surgical infection has been a bear. I had all the mesh removed and hope I can get back to some kind of normal life. For the time being I am hooked up to an IV pole a few hours per day. Not fun! Hope everyone is doing better.

Brandi,

I'm now on Prolia for my osteoporosis. It's a shot, and I get it every six months. I don't get any side effects from Prolia. Prolia is more expensive than the biophosphonates, however, and your insurance may not cover it. Talk to your oncologist about it.

Hi Dawn,

Sounds like it is not very common and it is uncertain whether or not if would be resistant, even if mucinous. It would have to be confirmed by pathology surgery, then even if confirmed mucinous, it could or could not be resistant to Herceptin. You are receiving neo-adjuvant treatment, and will have surgery later, correct? Did you have AC chemo. or are you only getting Taxol + H + P? (This is just me being curious, I was also IIB and got a ton of chemo)

The good thing is that, even if your tumor turns out to be both mucinous and resistant to Herceptin, nowadays you have many options. Kadcyla has just been approved to treat Her2+ breast cancer when there is residual disease after neoadjuvant treatment, and it is a very powerful drug. And another drug has just been approved to treat Her2+ breast cancer that is resistant to Herceptin, I think it is trastuzumab deruxtecan or something like that. I would say dont panic. Even if resistant to Herceptin your cancer wont grown under Taxol, and upon surgery they will be able to see the response and decide how to blast any remaining cancer with the appropriate drugs.

Also, did you (and everybody) check the new guidelines for staging? Sound like some of us would downgrade from stage II to stage I with the new guidelines. I was wondering if somebody discussed to with their MO.

hope everyone had a good holiday weekend.

For you nausea ladies, ask for the Transderm Scop Patch and try the OTC Sea Bond acupressure for your wrists, learned this trick from other groups and it worked perfect for my 1st round.

As for the Herceptin ... look up this study they did ...Kadcyla is Herceptin on steroids. Fewer side effects.... KATHERINE STUDY....Trastuzumab emtansine (Kadcyla®): an antibody-drug conjugate that targets the HER2 pathway and delivers toxic drugs to tumors; approved for subsets of patients with HER2-positive breast cancer... new data shows that high risk women ( positive nodes and/or residual disease after neonadjuvent treatment at time of surgery) should get Kadcyla for a year (adjuvant) due to Katherine trial. Kadcyla is chemo ( TDM-1) inside a Herceptin Linker.

Question: we are all Triple+, wondering why some are AC&Taxol and some, like me, TCHP?

And is the neulesta Shot a CHOICE for you, does your Onc demand you take it?

Anybody have natural Tips or Tricks to keep WBC up? I am researching these new infusion centers near major sports towns, they offer high dose Vitamin C and there is some research this helps kill off and flush your systems to minimize side effects, many 'integrative/ Naturopath Oncology centers offer...

Hang in There everyone, we got this, don't give the BCB (breast cancer bitch) any control or power over our lives, yes a few adjustments but it is our lives so it is up to each of us to live our lives as best we can...

Keep F*cking Going...Always an Adventure ~Kim

Kim, I read everything about Kadcyla, and asked for first and second opinion about it, and I think you are wrong to say that has fewer side effects (I am assuming you are referring to fewer side effects than Herceptin + Perjeta, which is the treatment that Kadcyla will replace -when there is residual disease after neoadjuvant treatment); Kadcyla is chemo, and has much higher toxicity than Herceptin + Perjeta.

Laughing Gull, I completed 4 rounds of AC and just had my 5th Taxol. I tried looking on the mucinous carcinoma board but nothing there related to her2 positive.

Thank you for the information on other drugs available. I guess seeing herceptin may be resistant bothered me.

Thank you all for your input.

LaughingGull, As far as the Kadcyla, sorry, I should have clarified that was all copy and past from the Triple+ FB group.

I will keep moving forward.... I start with new Onc June 19th, who is more interested in me as a patient than Insurance telling him what meds to give and not give.... fingers crossed

Sad note: my hair is coming out, they say I will be bald by my 2nd round June 3rd ...

But on the good side: no hot, heavy, long hair to deal with during the summer, AND I don't have shave my pits or legs Whoop Whoop for me!!

Kim - I hate to break it to you but my leg hair kept growing up to the bitter end. It did seem to slow down a little, but is growing back gangbusters now. The pits were the first to give up and the last to come back though. To this day I have only a few stray pit hairs.