TRIPLE POSITIVE GROUP

Ang don't be embarrassed to discuss this with your onc. They knew this happens. I too went into chemo-pause. I used a combination of Replens and Astroglide. Initally my NP told me to use the Replens 30 days in a row. After that I was to switch to 2X a week. Astroglide when actually using the "equipment" Now I don't even use Replens.

It doesn't work for everyone. Some people have more of an issue. Also check out the thread: "I WANT MY MOJO BACK!"

Also if all else fails the gals on the stage IV threads talk about this prescription drug called scream cream. I know nothing about it but it seems to work.

Lago:  I'm ready about the Al/Tamox treatments.  My onco last week told me that after 5 years on the Al, I go to Tamox for 5 years.  Not looking forward to it either.  Has anyone else heard this?

Arlene

I did ask and she said there is no clear study showing 10 years on either drug but since there are studies of 5 on one and 5 on the other that the new treatment is now 5 and 5 (for a total of 10).  I have osteopenia (like you) and no change in years.  I have no heart problems (my EF is back almost to where it started which was 73).  Maybe I need a second opinion!  She says most of her patients are happier with Tamox than Al's. 

I had to go to town today and my mind just went right in to the chemo clinic, Well I stopped at walmart then bought some donuts and took them to the chemo clinic for all the patients and nurses. The nurses where so shocked to see me It just felt so good to just visit and bring something sweet.

gratitudeforlife,

In my situation, stopping the drug was based on both intelligence as well as intuition.

During initial treatment with CAFx6, I had moderately increased LFTs, which continued after starting tamoxifen. Middle-aged and older women w/o bc or chemotherapy or tamoxifen not infrequently have "fatty liver" with increased LFTs. That can progress to a worse situation for anyone with increased LFTs.

Because I have no other known chronic disease and have positive health habits with no bad health habits, and am HR+ and dx'd as stage I, my odds of survival long-term were quite good without continuing to take the drug. Although many care providers to not grasp the risks well enough to comprehend that the risks of increasing the likelihood of other diseases are not included in the various cancer calculators, I do. It is also why I refused blood boosters during chemo, which prolonged my chemo misery by 1 1/2 months duration.

TonLee,  Thank you

Sure don't want to give up on sex at only 45 years old.

Hi to all of you,

Lago, yes, I am aware that some patients have fewer SEs with AIs than with Tamoxifen and vice versa. I guess one has to try these drugs to determine which of the two forms may be better for them. 

AlaskaAngel, I notice you were diagnosed in 2001 and no Herceptin treatment is listed. I am assuming it was not available at that time to a broad patient base (my MO, I believe, has told me that it is a relatively new drug, used on patients for the past 6-8 years??). 

Yes, some of you mention how all the cancer treatments negatively impact the "nether regions" re: creating a Gobi or Sahara Desert down there. I use coconut oil and Astroglide. Things have improved noticeably, thank goodness, but I remember the first few times after the six rounds of chemo, esp., WOOOOOOOOOOW---painful!!! 

Gratitude, it is possible that some of the aches and pains are Herceptin-related and not the Tamoxifen.  I am noticing that my aching eases in week 3 and intensifies after my infusion.

gratitudeforlife Herceptin was approved for early stage cancer in Nov. 2006, late stage in Sept. 1998. 

Vballmom, sure,it is possible that the Herceptin is making me achy, too. I feel like I have the flu for two or three days after the infusion, but I have chills and fatigue, YET I have not noticed any increase in joint pain.  I think we all know that it is quite difficult, definitively, to pinpoint which of the several treatments have left us less than what we were prior to the treatment. That being said, without the treatments, we would not be long on this Earth, so I basically ignore the pains, which are certainly not debilitating but are annoying, and just carry on. What is the point in focusing on one's ailments and missing out on enjoying life?!

Lago, thanks for the info., re: when Herceptin was first given to BC patients.  I knew you would be aware of that info. Smarty pants  (that's a compliment!!!).

I am attaching an article I read today about how mammograms administered after  BC treatments, focusing on  women who are taking Tamoxifen, may be used to measure decreases in breast tissue density, perhaps an indicator that women are metabolizing the drug well. That would be so great to know, rather than taking it, as so many of us do now, not ever really knowing how effective it is, yet also being concerned about its negative SEs.  Here is the article:

http://www.sciencedaily.com/releases/2013/04/130422175704.htm

TonLee - I read your post very early this morning and I have been chuckling on and off since.  I would loved to have seen your face at that moment.  The visual of you winking and giving her the ok sign is just hilarious!

TonLee...omg thanks for making me smile today! LOVE IT!

Lago, thanks for the helpful post on finishing up.  I'm ~2 weeks away from being done with radiation, and I worry about how I'll fare out there on my own.  My NP says that's when it really sinks in for a lot of women and that it is normal to feel worried and abandoned.

I have to try to catch up with this board!  I've just been so tired.  I have radiation burns too, but almost done!!

Pbrain - you'll still be getting Herceptin for a long while yet, and you'll be starting Tamoxifen, so you'll still have plenty of medical appointments!  Not to mention the periodic echocardiograms or mugascans.  I found it a big relief to be finished with the daily radiation appointments and am happy I only have to show up at the oncologist's office every 3 weeks.

I went to see the Physical Therapist today for a pre surgery eval. She is the same one who helped me after my BMX in 2000. Back then she was just starting to work with BC patients now she has become a certified LE therpaist and works almost exclusively with cancer patients. I am so glad I was able to get into her before my ALND surgery on Thursday. Not only did she give me a lot of good info about post surgery care, but she also did some myofacial release on my chest and underarm area that apparently has been tight for years from the last surgery. She said that releasing the muscles pre surgery should really help with post op healing. I have an appt for 5 weeks post op for follow up care.

Herceptin tomorrow, then surgery on Thursday. Busy week. On the bright side, as a show of support for me all the women in my office and even some of the men wore pink today. Normally I am not a fan of the whole pink BC thing, but it was very sweet.