TRIPLE POSITIVE GROUP
Comments
-
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.
0 -
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.
0 -
SpecK thank you for the info !
Hugs from TN
Denise0 -
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.
0 -
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!
0 -
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!
0 -
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
0 -
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!
0 -
HapB
So true!
0 -
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
0 -
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
0 -
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
0 -
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!0 -
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.
0 -
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.
0 -
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.
0 -
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
0 -
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
0 -
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😬
0 -
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!
0 -
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?!?!"
0 -
Thank you... I know that Im in good hands all away round.
Hugs from TN
Denise
0 -
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
0 -
is blurred vision a side effect of herceptin? i cant read the small prints of my bible
0 -
Kae md99
A member of my MO Team said they see eye changes all the time with chemo patients. They could not say this was permanent or not.
I've gone from -2.25 to -1.75 in the past 10 months.
Go figure.
Vicky
0 -
I had a lot of eye issues and my prescription changed during chemo, but its back to what it was before now, I am about 9 months out.
0 -
getting my first infusion right now... Everyone has been wonderful.. Port is a blessing
0 -
Kae md99, I still have issues with my vision nearly 5 weeks out from last TCHP, but can't be sure if it's the cumulative effect of TCHP or H only. Blurry vision and changes in reading and distance vision. I am holding off on getting my eyes tested for the time being. Thank you Meg2016 and Vicky for the feedback.
DeniseT, the port is something for sure. It saves your veins. I am happy to hear you got through your first infusion. I have had a similar experience with the oncology nurses during infusion - incredible caring and real attention to comfort and safety.
0 -
all in all it wasn't too bad. Just really long day. They gave me my pill cocktail... Stuff for my stomach and steroids and a host of other stuff. They also gave me some Attvan to chill me out.
I haven't had any problems yet with the meds. Sx..so far is a lot of gas... No appetite... And wornout due to no sleep and being there 9 hours I have my little Neunesta thing on. It's already injected me... Just waiting for it empty out by tomorrow. I'm all pill up and now resting
Thank y'all for the good wish. I got very good care and it wasn't as scary a I thought. But now on to the next scary thing the next 10 days.. .
Hugs from TN
Denise
0 -
suburbs - best wishes to you on your surgery next week. I am praying you have great pathology results. Take care
0
