TRIPLE POSITIVE GROUP

Anonymous

ElaineTherese
My tumor is under 2 cm ..its at 1.7 cm at the widest.. I do have one lymph node that is 9 mm ... tiny ..

Hugs from TN
Denise

Anonymous

Hap,
From what I understand .. and I could be wrong... being tiny is what the problem... Mirco cancer cells can get out into the body... and they can't find them an kill them ... so BOOM nuclear bomb it ...
I know reading about the medical research folks are doing they are looking at using a person's own immune system to find and kill ..
And they are making advancement on a daily bases..
Saw this one yesterday ...

http://www.goodnewsnetwork.org/new-cancer-drug-eff...

Hugs from TN
Denise

SpecialK

shelabela - yay! For surgery after chemo I would encourage you to eat as much protein as possible to get your hemoglobin in a healthy place, 100g a day or more and continue that after surgery to help with healing. BMX with TE is uncomfortable for the first several weeks, but if you are having rads I would encourage you to fill as much as you can handle, as fast as you can. Radiated skin does not stretch well, so it is best to be as expanded as possible prior to the start. Use pain meds and muscle relaxers if you need to so you can remain as comfortable as you can during this process.

hap - the addition of Perjeta to Herceptin is for tumors over 2cm, or for smaller tumors that also have positive nodes. That is the current FDA approval for Perjeta for early stagers - but it is not in place of Herceptin, it is added to it. Early stage is categorized as anything IIIA or less. Perjeta was previously only approved for metastatic patients, as is often the case for newer drugs. That was true of Herceptin as well, and it was approved for early stage use only a couple of years before my diagnosis.

kae_md99

shelabela,my PS told me we need 3 things for wound healing. protein,zinc and vit.c

SpecialK

hap - use of Herceptin alone is at your oncologist's discretion, but it would be somewhat off label for an early stage patient. I don't think you will find any specific FDA guidance on this. Stage IV patients get Herceptin only for as long as it works long past chemo - some for many years, but most have had chemo along with their initial dosing at diagnosis. I know you had queried this in an earlier post - there is just no current data yet available on the efficacy of Herceptin when not accompanied by a taxane. Here is some Herceptin FDA info, but it is about the initial approval for early stage and the stats regarding adding Herceptin to chemo versus chemo alone.

https://www.cancer.gov/about-cancer/treatment/drugs/fda-trastuzumab#Anchor-Breast

Here is an article regarding Herceptin only treatment, with no substantive stats, but the acknowle4dgement that it may be a viable choice - this article is from 2011 and suggests initiating study:

https://www.ncbi.nlm.nih.gov/pubmed/22015286

Here is the NEOADAPT trial looking at monoclonal antibody treatment without chemo, but with anti-hormonal:

https://clinicaltrials.gov/ct2/show/NCT02689921

kae_md99

hap , he told me i could get protein,vitc and zincin any form so im guessing food and supplement.

Anonymous

SpecialK you are a wealth of knowledge.. thank you so much for everything you do for us ..
Hugs from TN
Denise

SpecialK

denise - happy to help! Please ask me any questions you have and I will try to answer them.

I saw a discussion earlier about icing. Here is my experience with this - I iced during the Taxotere portion of my chemo - started 10 minutes prior to the infusion and continued for ten minutes after, and the infusion itself was usually 60 mins. I used bags of frozen peas that I brought myself. My oncologist had no objection to my icing, but my center has no independent support for icing - like a freezer or mitts and booties like some places do. Personally, I am not a believer that icing prevents neuropathy. I used systemic means in the form of L-Glutamine powder (30g a day in 10g servings dissolved in a cold, non acidic drink, and Vitamin B6, regular capsule for prevention and management. I just don't think the half life of chemo drugs is fast enough for a local treatment like icing to have that much of an effect on a neurological side effect like neuropathy. I did develop mild neuropathy, beginning with the very first infusion, but it resolved by the next infusion, for the first three infusions. After that it stayed, still mildly, but I continued supplementing and by 90 days PFC the neuropathy was gone. I iced to prevent my fingernails and toenails from lifting and coming off. In addition to icing on the day of chemo, I also painted my nails a dark opaque color, usually dark gray or navy. I left this on for the day of chemo as light penetration is supposed to have an effect. After the first day I removed the dark color and painted a clear nail hardener on my very short nails, and then put on a coat every day for seven days. After that I removed it and started over again for the next seven day period, and one more time until the next infusion when I painted them dark again. I had no lines, ridges or discolored areas on my nails by the end of chemo.

meg2016

I had neuropathy after my first treatment of Taxotere. I freaked out because it was pretty extreme and was so immediate. I began icing but also began acupuncture. Where I go for treatment (Dana Farber) they are doing studies on acupuncture for neuropathy. I couldn't participate in the study because I didn't live close enough, but the fact that they are doing this multi-year study indicates they believe enough in the connection to further study it. As my treatments went on, my neuropathy got better instead of worse as I continued acupuncture. I was even able to have insurance pay for the acupuncture with a note from my oncologist that other treatments had been tried (there really aren't any for neuropathy during chemo.) So I recommend trying acupuncture. I was skeptical, but came though chemo without any permanenet neuropathy.

Anonymous

SpecK thank you for the info !

Hugs from TN
Denise

BJI

Taxol #3 went fine, no issues. My port was being kind of stingy giving blood, its very positional. Nurse had me leaning forward, lifting my arms, standing, laying down, finally got it going so we could it start. Always makes me a little nervous, but they always get it. She explained it probably gets to the side of the vessel and it takes a little coaxing to get it to move. Stopped to have supper after with my hubby. Still haven't lost any hair, expecting it any day. Have appt tomorrow with my sister to make a choice on wig and get it ready.. No neuropathy yet either. Hope I feel as good tomorrow, got lots planned, t-ball with grandson, groceries and get packed for the lake. Daughter and her twins coming for the weekend. Started my claritin and stool softeners tonight. Since I haven't been having any issues after my treatment, PA said she doesn't need to see me prior to next weeks infusion, just labs before. Plan on seeing MO the following week.

e12345e

Hello ladies, I'm here to seek advice.

I was diagnosed with triple+ IDC BC with a small DCIS in my left breast while I was 20 weeks pregnant. I decided to go through lumpectomy first and wait for chemo after I deliver. Tumor was 1.7cm and nodes were neg. Fast forward 6 months, yesterday was my first chemo day. My oncologist had recommended the TCHP regimen as I'm still young (35) and she wanted to be conservative with my treatment. However, literally an hour before my infusion, she told me that my insurance rejected Perjeta as part of my treatment. She said there's a recent study that came out that Perjeta does not significantly decrease my reccurence rate. In fact, it was a difference of about 2% but that's mainly for ER- patients.

Anyway, it just came at me so quickly so I didn't even have time to process. At first, I was thrilled that I can skip it but as I was waiting for the infusion, I panicked and feel I didn't have time to do my own search. I called Stanford hospital in the bay area and spoke to their first director of their breast cancer center and he mentioned I should do even the lighter treatment of Taxol + Herceptin only. Ahhh, so much information.

Can anyone who had went through either TCHP or TCH give me your insights? I did go for the TCH infusion yesterday. I'm feeling normal so far. I know it'll hit me in a day or two so just bracing myself now. TIA!

moodyblues

Shelabela.  I had a unilateral MX and honestly it all went very well.  I am not saying that I wasn't uncomfortable at times but I was not in severe pain, I expected a lot of pain but, was pleasantly surprised that it was minimal.  I took 1/2 of the prescribed pain meds, if that tells you anything.  The lymph node BX hurt worse than the actual MX.  I hated the fact that I was so numb under my arm (balloon arms) but yet felt the pain from the lymph node dissection.  I did have some shoulder pain (back) but, the pain meds handled that.

Things I did.  Slept flat on my back or in a recliner.  Walked my arms up the wall at least three times a day, (with doctor approval) to prevent lymphedema.  Drained tubes three times a day (which became second nature after a day or two).  Walked every day (with doctor approval).  Get baby wipes!  (helped so much with my balloon arms in the bathroom doing my business)   Drink plenty of fluids to keep constipation at bay because the pain meds may cause constipation.  Allow others to help!  Allow others to do!  Allow yourself grace!  One thing I would recommend is a bag to hold your drain tubes in, I had two drains and had no problem keeping them out of the way AND away from any accidental pulling.  Also, it kept the drain tubes in place while sleeping. 

I heard horror stories on here about the MX  and drain tubes but, I really didn't have too many issues.  honestly. 

Tissue expanders were a bit tender at first but that is to be expected. 

Wishing you well!

coachvicky

Dear e12345e,

I have come to the point that the treatment doesn't matter. I know that sounds strange. There are survivors who took more than I did and survivors who took less than I did and they are still here!

I have asked a million questions to my MO as to why I can't have Perjeta. Kind ladies in this forum have given me the standard of care requirements.

At some point and after some messages from Special K, I came to the realization that my chemo regiment was what my MO determined was the best for me. I did my research, I questioned, I prayed and I have what I have.

I took the lead of faith that this is going to work.

I hope this helps.

Coach Vicky

moodyblues

CoachVicky  Very well said.  We each respond differently to more or to less of whatever they give us and I have found that there are a lot of survivors!  You too have been a blessing of encouragement to us!

wabals

HapB

So true!

deni1661

Shelabela - congrats on that last chemo, I'm so happy you're done! Enjoy the coming weeks before surgery and take good care of yourself.

I had a Unilateral MX. I felt pretty good within 2 days - up walking around, taking showers, able to move around easily. I was on pain meds for less than 2 days. The drain is annoying but easy to manage; the hospital gave me two pouches one dry and one for the shower. I had DIEP flap recon surgery 10 days later so I wasn't able to do the arm exercises until just recently. I would highly recommend doing the arm exercises as soon as your doctor approves otherwise scar tissue builds up and you'll get cording. I'm still dealing with cording 5 weeks after recon and it is painful plus limits ROM.

The surgery boards are wonderful. Lots of tips on what to expect, setting up your living space, what to wear, etc. I set up our guest bedroom and slept sitting up for about 6 weeks. I am finally able to sleep on my side! Some women sleep in recliners. I had a lot of fatigue but that was due to having two major surgeries plus I started back up with my HP infusions. Again, the surgery boards are wonderful and I'm sure you'll find plenty of tips that canapply to you.

I pray you have clear margins, lymph nodes and pathology - no more cancer for you! Wishing you the best

deni1661

coachvicky - I'm sorry your MO won't allow Perjeta. I admire your positivity and faith; we all need both since it appears treatment options vary greatly. Same with nutritional and lifestyle advice. Not to sound negative but how do we know with 100% certainty what is working? Our bodies are different and therefore we respond differently to whatever we put in our bodies.

There are many, many survivors and I believe God will bless us all with survivorship too. You are a great example of positivity, thank you for sharing

deni1661

BJI - glad to hear your treatments are not too problematic. My port stopped giving blood after 4 treatments. Very frustrating as I probably could have done without the whole port experience.

Take care

deni1661

Has anyone developed severe pain in your tailbone from any of the AI's or HP? I had terrible body aches from Arimidix and started having tailbone pain about 2 months ago. My MO thought it was from the AI so he took me off Arimidix while I was going through my surgeries and recently switched me to Letrazole. I don't have muscle aches from the Letrazole but my tailbone hurts more than ever.

My MO ordered an MRI when I have my next treatment. I'm freaking out that this might be a secondary cancer. Irrational I know since my pathology was clear at surgery but I can't get this out of my head!

BJI

e12345e, my diagnosis very similar, but I am 62. I am doing Taxol/Herceptin weekly for 12 weeks, then Herceptin every 3 weeks for 9 months. I had lumpectomy April 26 and brachytherapy radiation for 5 days. I just finished my 3rd infusion, all is going well. My MO said this is the best treatment for me, and I did my research and had to have faith that all would go well. Everyone is different even if our diagnosis is similar. Have to have faith and trust your MO. Good luck.

SpecialK

hap - PICC lines are a pain, but they are a viable choice. They are more of an infection risk and have to be safeguarded since they are external. I have seen some use their inner bicep area since it offers a bit of protection from accidental pulls and can be disguised by clothing.

SpecialK

If your second Taxol is tomorrow you would have the PICC for 10 weeks if you just used it for chemo and removed it and did the Herceptin IV. I think that is workable, especially in light of having experience with one previously. Sorry your port is an issue. I was fortunate to have mine put in during mastectomy and it was totally healed before I started chemo.

Suburbs

deni1661, good to hear you are on the mend and recuperating well. I will have my surgery next week and hope to follow in your footsteps. shelabela, hurrah. It's good to be done chemo. Congratulations. Coach Vicky, I hear you. I have adopted the same attitude about surgery. Two weeks ago I decided to take a great leap of faith, set aside my fears, and place my trust in the surgeons. HapB, my port was painful for several days. Hopefully it will get better. I am keeping mine through to the end of Herceptin only infusions. All the best

coachvicky

Thank you all for your kind comments. It is a journey that I am happy to travel with you. I have peace and wish the same for all.

With love,

Vicky. (I am using my name from now on

Anonymous

Hey everyone, had my port put in this morning. All went well... Only had had one break down. I have a big fear about being knocked out... They gave me something before they wheeled me in at that point I didn't care lol.

next thing I knew I was in recovery telling everyone I loved them lol.

Doing OK scared to move ...feeling sore.. But it's better than this morning. On pain meds and Tylenol.... But doing OK really. The MD told my husband I did great.

I do look bruised a bit. But Im all bandaged up. They left it to where they can access it tomorrow when I start my chemo.

Which is a whole other scary kettle is fish...

I cant lift anything 10 pounds or more... but did y'all have any other restrictions? That's all they told me.... Other than not to get it wet just yet.

Vanderbilt took really good care of me. can't say enough good things about my care.

now on to this thing call chemo😬

Tresjoli2

Denise,

Good luck tomorrow. I know you are worried about the allergic reaction. As someone who had the allergic reaction (twice, but that's a story for a different day) I just wanted to say your team will be looking for it, and they will know exactly what to do should it happen. It most likely will not happen, but if it does it gets resolved very quickly. Hugs and good luck tomorrow!

Shelabela whoop whoop!

e12345e

HapB, CoachVicky and BJI,

Yea, my MO mentioned this study(http://www.nejm.org/doi/full/10.1056/NEJMoa1406281...) to me before suggesting TCHP to me because of my age. She said she felt more comfortable with the more aggressive treatment because of my age and the fact, I did have a grade 3 tumor with high recurrence rate. I just felt very uncomfortable that I was told I wasn't getting Perjeta literally 30 mins before my first infusion time.

However, after talking to the Director of the Stanford Hospital BC center, whom was one of the main participants of developing the drug Herceptin and was a big advocate of Herceptin + Perjeta, he assured me that the latest study shown Perjeta was not needed for my stage. It did give me a sigh of relief.

I want to stay positive and hope for the best. Thank you ladies for your support.

By the way, a random thought. Whenever I have to fill out the pysch evaluation, they always ask if I have any thoughts of suicide. I always think to myself, "No, I want to live FOREVER!" How do I live forever?!?!"

Anonymous

Thank you... I know that Im in good hands all away round.

Hugs from TN

Denise

coachvicky

e12345e

I find those psy questions strange too. I had depression on my records and asked who was qualified to make that diagnosis on my MO Team. Was told I had cancer and depression goes with it and was offered an Rx for it.

Really? I am dancing on my eyelashes (I had eyelashes then LOL) that it was found! Got that diagnosis removed.

Unless you have walked this journey, no one knows the range of emotions and the fight to live.

Vicky