TRIPLE POSITIVE GROUP

shelabela

@coachvicky , thanks everyone says I look great with shorter hair. Still so new to me. Used to having long hair my whole life.

Welcome to all the new ones! Sorry your hear but this is a great place for info.

Tresjoli2

afternoon ladies! I went to my eye doctor today for an annual exam. In 2016, the pressure in my eyes was a bit high. We checked it again today, and it's higher than it was in 2016. Apparently that puts me at risk for Glaucoma. I now have to be seen every six months and have a measurement of my cornea, along with an ultrasound of my optic nerve. The optometrist also said that tamoxifen can cause damage to the retina, and so I need to monitored very carefully. No one ever mentioned that to me. I look it up, and sure enough - Tamoxifen can cause problems with the retina. ARGH it never ends. I'm now left wondering if all the high doses of steroids I took for so long during treatment elevated the pressure in my eyes. No signs of glaucoma yet - but now let's add one more doctor that I have to see every six months because of my stupid stupid stupid stupid cancer. Wah!

Ingerp

Ugh, Tresjoli.

ElaineTherese

Yes, indeed, Tresjoli. Cancer is the gift that keeps on giving.

SpecialK

tres - well that's craptastic! Bonus is that one of the meds for glaucoma brought about Latisse to help grow eyelashes, so if you need it (Bimatoprost) to control your eye pressure you will also have beautiful lashes! Trying to look on the bright side for you...

Suburbs

Tresjoli, ugh not fun. Sometimes I think being triple positive is like the movie “My Cousin Vinnie.” Just pile some more on. I’ll go next.

I can relate to your emotions. If it was not bad enough having a rare infection and an abscess post sugery as well as horrible side effects from nerlynx, along the way I added two eye surgeries for rogue eyelashes returning and growing into my eyelid, and more recently a knot on my chest being monitored by ultrasound thought for now to be necrosis. What next! Wah!

Blownaway

Hapa - I've had above the muscle implants and now I have sub. The pre definitely sag sooner. The sub implants don't restrict me at all. I can do push-ups or anything else with no loss of strength. No bra needed for support of my D girls either

Homemadesalsa

Hi all-

I'm a week out from finishing rads (hooray) and my skin is almost done peeling, but the scar and boost area are still painful, but less so.

I have a question for Suburbs or anyone else who might have dealt with rash issues. I've been on Herceptin/ Perjeta since late March as part of TPH, and never had any skin issues until I started rads in late June, when I got a persistent rash on my upper arms. Over the counter hydrocortisone cream and Benadryl creme help, and then I found some Betamethasone (rx cortisone) that does the trick. The RO says it's not radiation rash or radiation caused, and it doesn't seem to be caused by H or P, unless it was jolted by the rads. I wake up at 4am wanting to scratch myself into oblivion. I was hoping that the rash would go away once I stopped rads, so have been patient (as much as I can be...), but am looking for some guidance. Will call my primary doc, but thought you gals might have some insight. Thanks in advance!

SpecialK

homemadesalsa - I did not do rads, and I am not sure if rads could have brought a rash to the forefront, but I did have rash issues during treatment. Both taxane based chemo and H and/or P can cause skin rashes. Mine was photosensitive, and would come on pretty intensely if I went outside for more than a few minutes in sunlight. I am wondering if rads exposure could trigger in the same way. I used cortisone cream, but also Rx Atarax (hydroxyzine) and this worked well. It can cause drowsiness so is good to use at night, but be careful using it during the day for that reason. The further out from chemo I got the rash diminished, and I had no problems with it in the latter part of H only infusions.

Tresjoli2

I love you guys! So much! I'm over myself today. Onwards and upwards.... :-)

BellasMomToo

I developed rashes soon after my 9th Herceptin-only infusion. I live in a cool climate, but during the mini-heat waves that's when the rash would be at it's worse. Benadryl helped and so did calamine lotion. After I finished Herceptin, the rashes went away.

lulabella

hi Sarahnola...

I’m on your same regimen and just did my 4th out of 6th round yesterday.

I usually have treatment on Friday and take the following week off of work. Then back to work for two weeks until next treatment. I tried to go back to work sooner but I was exhausted and not feeling well and couldn’t make it work. I usually feel pretty much back to normal on the following weekend.

I can’t say that I have breezed through it. I have had diarrhea (I think perjeta) that caused weight loss and have also been extremely tired and weak. I have been very grateful for help from my husband and parents managing the household.

Wishing you all the best

SarahNola

hi ladies! Thank you so much for all the info. Feels so good to hear from other women going through the same thing.

I finished my first treatment today. Was better than I imagined..had my mom and husband with me and friends poped in and out all day. I am just happy to be home!

A little afraid of what comes next but I will deal with it no matter what it is.

Sending you all good vibes for a comfortable, restful weekend! Xoxo!

coachvicky

I broke out with a rash on my face down to my chest the day after my first chemo (Taxotere, Carboplatin, Herceptin). Wasn't bad or itchy. Called in and my MO prescribed a steroid cream. Cleared it right up. MO did not seem surprised. Rash did not come back. BTW, I did not have radiation.

I did not know that being in the sun and on chemo was a "no no." I have freckles on my arms and legs now. Enough that I notice but most likely no one else sees them. The Nurse Practitioner on my MO Team said the freckles were due to sun exposure.

Here is what has remained and I don't know if this is from the chemo or chemo and sun exposure: Whenever I garden (just about everyday) my arms and the tops of my hands itch after I have touched any type of foliage. This never happened before chemo. My Dermatologist prescribed Triamcinolone cream 15gm 0.1%. I use it for one week and then two weeks off. I am not that great at following a schedule. It still does work.

I did get DH to put a faucet by the garden so I can immediately rinse off. Not a bad deal to itch to get a new faucet and it beats dragging the hose!

I have no research on this but I think our skin can be affected just like our hair and nails. I also think the longer the time from chemo, the better our bodies become.

Best wishes Homemadesalsa. You might want to see a Dermatologist. The one I see works with skin cancers and seems to know more about the effects of cancer treatments. My Primary Care listened about this but I am unsure if he would have made the same prescription.

One more thing to share ... you know that numbness with phantom itching that can happen after breast surgery? I still have some on the back of my left arm and under my arms. The back of my right arm just feels different. I used a coffee scrub on these areas once I healed and I think that brought back a lot of feeling.

I can live with this and I don't want to live with this. So ... I asked my Physical Therapist if she thought dry needling would help. She made no promises but agreed to try it.

I had my first dry needling on Tuesday. I have not itched and I have a little greater feeling on the back on my left arm. The back of my right arm feels almost normal. I have three sessions, each a week apart, to go. She also recommends some home techniques such as gently rubbing a cotton ball over the areas followed by a sharp end of a paperclip. I have no idea if this will work for the long term. My insurance covers seeing the Physical Therapist and the exercises but not dry needling. The charge is $35.00 for the dry needling plus my co-pay of $30.00.

Here is the topic on BCO:

Topic: Phantom Itching 2 years post reconstruction

Forum: Surgery - Before, During, and After — Surgical options and helpful tips for recovery and side effects.

Have a great weekend everyone.

Vicky

PhoenixCruiser

Back from vacation!

Surburbs, that sucks about having to shave your legs again, The hair on my legs was the first to grow back - go figure.

Shela, you look fantastic! I hear you about being used to having long hair. When we were in the Southern Caribbean I was finally ok without my wig. Now that we are back home it is back on.

Welcome to our new members, congratulations to those finishing up.

My MO is sending me to a specialist due to repeated low sodium levels. Anyone have any experience with this? Just doing Herceptin now, finished Taxol at the end of February.

Suburbs

homemadesalsa, i had a rash from perjeta which was kept barely under control through steroids and cortisone cream. The rash appeared after my first infusion. I had to be weaned off the decadron around 4 of 6 cycles. I had to either tough it out or drop the perjeta.

I used baby shampoo and cerave liquid baby soap, then coconut oil as a moisturizer. For the last two cycles, I took Benadryl before infusion and immediately after and that helped. When I stopped the TCHP, the rash went away quickly. I did not do radiation.

As SpecialK said, rash can be a side effect of perjeta and chemo as well, though it is not common. I had a number of sun spots, actinic keratosis, that lit up like a Christmas tree. I have very light skin and freckle. I had to completely avoid sun.

I hope you get some relief.

deni1661

Hello everyone,


Welcome to the newbies. Sorry you have to join us but you're in the right place. You will find support, inspiration, and great information from these wonderful ladies.

Sarahnola - congrats on getting through the first treatment. You can do this! I think it is wonderful that you have such a strong support system.


Shelabela - you look GREAT! I love your hair short, it's a good look for you. I'm so happy you are feeling well after your surgery.


Homemade - CONGRATS on finishing rads and your bike race. The article was so inspiring, thanks for sharing. Sorry to hear you are having skin issues. I had a rash on my neck and chest when I first started the Herceptin and Perjeta treatments. It went away after a few months. My MO wasn't sure if the rash was from the AI or HP but I think it was from HP because it is completely gone since I finished treatment. I hope you find relief soon.


Hapa - I am really glad you are going for a second opinion before having surgery. My PS has been a tremendous source of comfort for me since the day I met him. I trust him completely and am beyond grateful for the care I received. I pray you find the same level of trust and peace moving forward.

Hugs to all

Lined

I have one more ac treatment to go.. then a months off before 33 rounds of radiation. I will continue with herceptin and perjeta for a total of a year. Are there any side affects from these two drugs and will my hair grow back while on HP? Also did anyone lose nails and if so does it hurt

JaBoo

Suburbs, even I had ti shave my legs this week! I'm totally bald after 3 rounds of AC, but the leg hair don't care! I was postponing it a bit, thinking they would just fall out. well they didn't and grew strong and dark as ever. ugh

SpecialK

I had to shave my legs throughout chemo - just not as often, but also lost my hair late and not completely. had thinning of brows and lost most, but not all, lashes. First thing to grow back with vigor was upper lip hair, lol! Ridiculous!

lined - you should experience hair re-growth during H&P, but some have a slower rate and more rapid growth after the targeted therapy is done. Are you having periodic echocardiograms? H&P can cause heart issues for a small percentage of patients, so it is important to monitor. Some people have some joint pain so slower infusion times can help, and I have also seen some who use Claritin to help with the discomfort. A runny nose is also common, and sometimes a low grade headache

JaBoo

SpecialK - lip hair first?!? Such a bummer! I'm sure it will be strong and dark under my nose when they decide to grow, ugh. My hair is dark but my skin very very light, so these growths are VERY visible.

Suburbs

Hi deni1661. Your PS sounds like a very special doctor. So glad for that. Hope that shoulder is doing better everyday.

Jaboo, hair is evil! It grows where you don’t want it, and takes a leisurely path back onto the head where you watch it daily.

Lined, everyone is different. Nails can get very weak,break off and split. I haven’t read that one experiences intense pain if they fall off, though pain is a common side effect for a whole host of conditions. Sounds like you are close to the finish line for chemo when many of the morerotten side effects make an appearance or have already done so.. Good luck with your radiation treatments. There are threads here on the message board which might be helpful while you start this next step in your treatment plan.

ElaineTherese

Still not shaving my legs here. Thanks AC + T! But, yeah, some facial hair became more prominent (fortunately, it's blond). And, my eyelashes are still pretty sparse. It just gives me an excuse not to use mascara anymore (though I do have a stash of false eyelashes for special occasions). Never lost my nails, so I can't speak to that.

Sadlynew2018

hello friends and fellow warriors. I’m new here. 10 days post diagnosis. My HER2 test came back equivocal so they are sending it to FISH? Google has scared me to death (I know, I’m my own worst enemy sometimes). I am reviewing this forum on triple positive because I want to know what to expect. Everyone sounds so helpful. I wanted to ask, if appropriate, whether anyone struggled with an equivocal test initially and the waiting period for FISH. Even if FISH is negative, I’ll always wonder if it’s too close to call and I should be treating as if triple positive. Sorry for the rambling everyone.

hapa

Sadlynew - My Her2 test came back negative on my initial biopsy. Two months later it was biopsied again and came back equivocal and was sent for FISH. It took a month to get the FISH results back and I strongly suspect the results were either lost or sat in my MO's inbox for two weeks, but that was positive. I'm probably not making you feel any better. FISH is considered the most accurate test for Her2 and there is no equivocal result from FISH testing, you're either positive or negative, and IIRC the vast majority of equivocals that get sent for FISH come back negative.

coachvicky

Welcome Sadlynew.

Any questions are appropriate. You will find tons of support here.

Dr Google is not a friend or at least not to me. However, the research on breastcancer.org (this site) is AWESOME.

Vicky

Ingerp

Sadlynew--after my initial pathology report came back equivocal for HER2 and they did FISH on it, my BS called and told me it was positive and I asked, "Are you sure?" and he said, "*Oh* yes." I'd trust whatever FISH comes back with.

LaughingGull

Hapa, thinking of you and hoping the reconstruction conundrum is resolving!

hapa

Thanks LaughingGull. I'm going through with the surgery as scheduled. I've heard from two other PSs in the area that my PS is a good surgeon, just not very nice. (And also kind of backstabby to her coworkers, which jibes with my experience as she has said things that directly contradict my BS. Anyway...) I'm going to stick with the pre-pec implants and I think whatever the cosmetic outcome is I'll just live with it unless it's really horrible. A little rippling isn't going to be the end of the world, these things are mostly just to fill out a shirt anyway. I'm not excited about having my boobs cut off but maybe knowing the cancer is out will be a relief and ultimately worth the pain and trouble. I'm hoping surgery turns out to be like chemo. I had tons of anxiety over it and it turned out to be not that big of a deal - anxiety was the worst part.

Princess_Meg

Hi SpecialK you are so right with the H causing heart issues. My H treatment has been put on hold now as my echo cardiogramm came back 40-45% after 3 months (5 sessions) of H. So right now, it is a waiting game. I see my MO on Thursday, then I will know what’s next. I am so bothered about this heart function issu