TRIPLE POSITIVE GROUP

Hi Ladies, I have a question regarding side effects and wonder if any of you have had these...I'm not sure if it would be the Tamoxifen I'm on or the Herceptin...One is that for a long time I've had a stuffy nose that really mostly acts up at night. Stuffy and presence of excess mucous (more crusty than loose and running). The mucous is partly bloody too. I'm not sure if it's the dry air or related to treatment.

The second one is more recent and relates to a tender scalp at the root of my hair. So, if I run my fingers through my hair, I feel the sensitivity. There isn't a lot of pain at all, but I do notice it and can't figure it out as it just started up within the last two weeks. Anybody else recognize this? I'm done all treatments except for the two therapies mentioned above.

Thanks for any insights you have,

Hi PoseyGirl I'm on herceptin and yes I get stuffy a nose at night too with some blood in it. I get headaches, sinus pressure, runnung nose and tiredness also but I thought it could be from the pollen.

I have had a bloody nose on and off since starting TCHP. The past week the eye tick in one eye spread to the other. It's very very annoying and frightening as my mind goes to the worst case scenario. : (

On the tender scalp subject, yes, I have experienced the same thing. My hair was cut off weeks ago. I have spots where I am completely bald, spots where tiny bits of hair has grown back, and spots that are sensitive

Started reiki/massage therapy this week in an effort to try anything to feel better and get healthy for surgery. I had tried it during my healthy life but it was different as I really used to concentrate my minds eye on healing (like pushing your edges in a yoga pose) and it was exhausting. I would hear sounds in my ears during a therapy session like the sound you hear when you put a shell next to your ear. I always felt as if I received a benefit from reiki if my mind was completely involved. Right now I am so depleted, I simply relaxed on the tabled and tried to rest. It seemed different being in a compromised state as I could not participate. Will have to see how it goes. This is probably not the right place to discuss. I was wondering if anyone else has gone this route.

PoseyGirl- I get cold-like symptoms from Herceptin. I also have the scalp thing from time to time- will last a couple days then improve. I just finished my last herceptin so I'm curious if it will go away.

Thanks SpecialK. The therapist is certified in oncological massage among other modalities. There was no pressure applied as the session was all reiki and no massage. It was more like healing hands energy work. I'm laughing at myself as that takes a great leap of faith. I will make sure to discuss the bruising issue next time.

Good to know that I am not alone with the crazy, random and every changing eye twitches.

PoseyGirl,

I started on Aromasin and I'm still on Aromasin. Aromasin made me moody and gives me hot flashes. To cope with the moodiness, MO prescribed Celexa. I have never been a fan of SSRIs, but hormonal changes have always negatively impacted my moods. I struggled with depression during PMS and pregnancy. I figured that there was no reason to suffer from depression for ten years, so I opted for the Celexa. It's worked well. As for the hot flashes, they occur mostly after 5:00 pm. Let's just say that I sleep with the ceiling fan on.

I do not have the severe joint pain others have endured. I can still walk, run, scooter, and swim without joint pain. But, I'm not going to win any races anytime soon. Best wishes! Hope you find an AI that has few SEs for you.

posey - my MO favors Femara so that is what I started with, and the pharmacist recommended that if I try one generic brand and have too many side effects to switch brands until I find one that causes me the least side effects. Often it is the fillers and additives that cause issues - my advice would be that whichever AI you try Arimidex (anastrazole), Femara (letrozole, or Aromasin (exemestane) - try to find the generic with the fewest additional ingredients. I am taking Roxane generic letrozole and it has fewer additives than the name brand Femara from Novartis, however, Roxane just merged with another pharmaceutical company so whether or not they continue to make it is a question. It is getting a bit difficult to obtain - my local pharmacy can't get it but the mail order one can.

OK, just figured out to add the DX...I had filled everything in, but didn't see how to add it. Thanks for the heads up!

Thanks for all the input on AI's and other, ladies. I meet with my onc. tomorrow and will ask. I am thinking I'd like to stick with brand name product for now (try it); my oncologist said it's more expensive, but generally speaking it will mean fewer side effects (other than the research you've done, SpecialK).

am on 3rd TCHP and the reflux is bad that it is hard to eat. i am going to the infusion center today to get some blood work and hydration.next week, i will meet with my MO and she mentioned reducing the dose of taxotere who she thinks is causing my reflux.i am also going to have an endoscopy...is reducing a dose of a certain chemo drug the norm when it has a lot of side effects.my tumor cannot be felt anymore..honestly i dont know if i still can endure the excruciating pain of the reflux plus i cannot eat my caloric requirements because of it.hopefully, it the taxotere gets reduced, it will still be effective and side effects will be minimal particularly the reflux

Hi SpecialK, I'm Canadian and so we are covered by OHIP as well as another government program for medications that are mandatory for breast cancer treatment. There is some cost to me, but I don't believe the brand names (from what I recall from my last meeting) are stunningly expensive. But I could be wrong. I will find out today for sure! My husband and I don't have private insurance. Thanks so much.

special K,yes i have all the anti reflux meds, omeprazole,pepcid, reglan for gastric emptying ( as i also have delayed gastric emptying which complicates matters).i have sucralfate to coat my esophagus and stomach plus i have GI cocktal ( mixture of viscous lidocaine and mylanta for when the pain is unbearable).so i actually have everything. even my GI doctor said, he wiil not add anything to my regimen.my gastro specialist will scope me next week. honestly at this point i dont think i can tolerate a full dose of taxotere anymore..i will probably asked my Mo what she thinks of reducing the dose9 she did mention it).my breast lump is gone and i want to achieve pCR but i think it has come to a point that full doe of taxotere is taking a toll on me..

Apple cider vinegar - go figure! I have some here and will try it. It's not really a big pain, but it's something I've definitely noticed.

Kae - how many doses have you had and how many more? If your lump is looking gone, sounds like you're likely there!

posey - you need the raw organic apple cider vinegar that has the "mother" at the bottom - DH uses Bragg brand, shake it up first and then measure out the 2 T, and dilute with water and drink on an empty stomach. Be careful not to add anything with sodium, or much sodium, or the vinegar denatures and is rendered ineffective. I am going to start doing it too!

suburbs - hold on to the thought that what you feel/see is a tumor shell, or ghost - I have seen people on BCO who had the same situation as you and then had a much brighter pathology post-op than they expected. Also, know that those who have neoadjuvent chemo at least get to know one way or the other whether the drugs had any effect, and possibly manage their treatment going forward based on that knowledge, such as continued Perjeta post-surgery or a different choice of anti-hormonal treatment. Those of us who had adjuvant chemo will never know if it was effective - we had to go on faith. Aside from shrinking tumors in the breast with neoadjuvent systemic treatment for a better surgical outcome such as better margin establishment for a large tumor with mastectomy or a smaller lumpectomy defect, the real reason for systemic treatment is to head off spread outside of the breast. I am aware that pCR is a better prognostic indicator but eradication of the tumor in the breast is not necessarily the primary goal of neoadjuvent chemo and targeted therapy for Her2+ patients, rather it is a quantitative marker of effectiveness. Not that long ago, prior to the late 2013 approval of Perjeta for early stagers, it was much more unusual for even Her2+ patients to receive neoadjuvent chemo. It was usually done as stated above for better surgical outcome. One of the reasons that Perjeta is only currently FDA approved to be given neoadjuvently, even though it is sometimes prescribed in other ways and with other drug regimens even for early stagers, is that it was a fast-tracked FDA approval drug and they are still gathering data. The approval process is a number of phased trials, but Perjeta was given somewhat of a shortcut, so it is still looked at from a confirmatory standpoint - being proven by the measurable and quantifiable method of post-op pathology.

thanks for the encouragement Posey Girl... is pray that it is going down.