TRIPLE POSITIVE GROUP

bjquilter

Thank you for your responses. I asked a friend to with me for my first H infusion since my hubby just had surgery and get go. Didn't know what to expect. I'll ask them to go slower on the first one.

shelabela

thinking of you today HapB! Sending hugs

shelabela

thinking of you today HapB! Sending hugs

shelabela

thinking of you today HapB! Sending hugs

kae_md99

God bless hapB! i noticed that the second to the last herceptin made me fatigued.i will have my last Hthurs next week.. i am so done.KB870, glad to know you are starting to get better..

Elfmcg

Hi everyone, i've never posted in this thread before as i'm hormone negative, but as it's the most active on the her2+ board, i hope that's ok.

Basically i started on subcutaneous herceptin three weeks ago after completing 12 with taxol, and had my second herceptin alone today. After the first one, i got worse aches and pains then i had on TH, in my upper back all over, and beside the lower part of my right shoulder between the shoulder and spine in particular has been aching, and i still have some upper stomach issues and rib pains i had during TH, although they feel a bit better. I was wondering has anyone else had anything like that? I did ask the nurse today and she basically looked at me like id ten heads, and that no one has ever reported symptoms like that to her, only chest pain etc. Im really worried now

Cherry-sw

Elfmcg, I also get subcutaneous Herceptin, I am in Europe. Just had my first injection after chemo this Monday. I have also been having issues with my upper back since the disgnosis in June, it started at some point in July. It probably has nothing to do with Herceptin, it could be all tension you got there during the treatment causing your muscle knots and lockingyour thorasic spine. Ask your rehab to sign you up for a PT appointment. I know this pain can be excruciating and even linger through the night

Cherry-sw

I am called for a mammo tomorrow, I wanted my MO to order one before rads, but I am so nervous, last time they did it they found my bc, the question is what will happen tomorrow. And I started to take Tamoxifen today, red about all SEs and now wait all of them to happen to me😡 I mean I already am depressed, retain water, am cranky, gained a whole lot of weight, hot flashes, no sex drive, chemopause so just through some anti-hormonals on top of that, seems like a good idea

Taco1946

bjquilter - Having herceptin every three weeks after having it weekly with the taxol means you will be getting more each time. Most centers put it in a 90 or 60 minute drip to try it. I had no trouble at 30 minutes but some do. I had no premeds - just a blood draw. Good luck.

Anonymous

elf-my herceptin was IV but I felt worse after the first infusion than on chemo with a mix of herceptin. Oncologist slowed it to 90 minutes and it helped a lot.

Cherry-I was on tamoxifen for almost three years. The main thing for me was the hot flashes. They were awful...like drenching, about four times an hour. I had them in the day, not so bad at night. They switched me to arimidex at the three year mark when my vaginal ultrasound (ob/gyn did one every six months to monitor things due to potential for uterine cancer) showed a thickening of the lining, and my pap smear had endometrial cells in it. While not cancerous, apparently they shouldn't be there at my age. So on to arimidex. Hot flashes are much more manageable but joint pain was bad, can't sleep well, etc.

I hit the five year mark in 2016. Quit taking it in November of 16, when my oncologist said it would only make a 2% difference. Then I had that big scare last month. I immediately got out my stash that I had continued to fill and started back up. My new oncologist (last one retired) said I should do 7 years on an AI. So...I'm back at it. I can't get anyone to order the breast cancer index test. My new onc said she would order it but did not think it was covered. I have Anthem insurance and am going on a mission to find out if it would be covered. If so, I'm hoping that will give me some additional help in deciding if I continue.

On tamoxifen, my sex drive was pretty ok. On Arimidex, it is nil. I really have to work at it.

kae_md99

i am curious , for those who hadlymph nodes taken out on both sides,where do you get your blood draws after your port is taken out? the lab i go to dont do legs/feet just like the hospitals nor do they do ports...

PoseyGirl

Thinking of you Hapb and hope you get through these scans free and clear. You know I was the same with my recent MRI and you were a solid voice beside me. We all understand the feeling and I feel inside you will be ok

SpecialK

hap - very good! Hang in there!

fluff - BCI is from Biotheranostics Laboratories. They have a department there that does nothing but insurance initial billing, then appeals if insurance denies coverage and payment. They handle the appeal process fully and if exhausted they do not charge the patient. This is what happened with me - because I am insured, but claim denied and appeals exhausted, I was not personally billed. If you are uninsured, they will use their patient assistance fund to reduce the cost.

kae - I had bi-lateral nodes removed and I allow infrequent blood draws/office visit BP on the side with fewer removed nodes, but I have good veins and I am an easy stick. For surgery they do BP on my ankle but I also allow an IV set on the side with fewer nodes, but I warn them they have to get it on the first try so bring the best they have for that one attempt, lol! This has worked for me so far for the 7 years since BMX with the subsequent 16 surgeries, but the vast majority of my labs after diagnosis were done at the oncologist's office so they used my port which was removed only a year ago.

kae_md99

thanks SpecialK!

Jumpship

Today the doc found a skin spot and thinks its basal carcinoma. I was proud of myself for not freaking out but I do wonder if the two cancers are related.

On a side note the MRI showed nothing (birads 2) but I can feel a pebble on top of my saline implant under the skin. How do you know it's just scar tissue or nothing to worry about

Cherry-sw

HapB, great news!

Fluffqueen, my hot flashes are actually worse at night but they were induced by chemo. Now when I am 3,5 weeks past my last EC I have noticed they got less for every night, but I have started Tamoxifen so I expect them to be back. I just hope for as less SEs as possible, some people are so lucky they do not get any at all.

I just hot home from my mammo and US my MO ordered and everything looked fine, what a relief. I had a smaller lump nere my tumor location site that turned out to be just fat and the doctors confirmed that they could not see anything suspicious there. I was trying to act normal but burst into tears because I look gross and I was nervous because the last time I was in that room they told me that I had bc. So now I guess I can go on with rads without wondering.

SpecialK

jumpship - basal cell skin cancers are the result of sun exposure, and tend to occur more frequently as you age due to cumulative sun exposure. I have had close to 40 of them, long pre-dating breast cancer - by 20 years. I do not believe there is any direct link between BCC and breast cancer, but it i thought that melanoma is more closely related to breast cancer but it is not completely understood how.

rljes

HapB - sending you hugs - hope you find out something soon with your scan today 

deni1661

Hapb - so glad you received good news on your scans! Prayers do work and may your faith continue to get you through as you fight on.

Suburbs congrats on your last infusion. it is a good feeling to be done!

Kae - congrats on your upcoming last infusion. It's a wonderful milestone to get these treatments in the rear view mirror and move forward with life. I pray your SEs from AI are minimal.

Cherry- happy to hear your MRI was clear, what a relief!

I'm housebound these days due to a major shoulder repair surgery last week. Recovery is going much slower than I would like but understandable considering everything my body has gone through in the last 18 months. Typing is a struggle but please know that even if I don't post often I'm with all of you in spirit and you're in my daily prayers. You all mean so much to me! Have a good weekend 😊

SpecialK

deni - feel better soon! We're with YOU in spirit!

Cherry-sw

deni1661, I hope you will recovery from your surgery soon

shelabela

deni, hope your recovery starts going better.

I am not the best at responding individually sorry ladies😏.

I do check in daily.

To the ones who have gone through chemo, surgery and rads.... did you have a spacey feeling some days? I swear some days i can't remember crap. My MO said it should get better but it is so hard I've always been so good as the one who is on top of things.

I had some far grafting done a week ago and so far i love the results.

Happy Friday ladies

Anonymous

jumpship-I had a squamous cell skin cancer removed. The skin cancer doc said he didn't believe it was related but who knows. I tanned and burned a lot in my younger days. I'm surprised I don't have a lot more.

deni-hugs that you feel better soon.

kae_md99

shela,

my kids tell me i have amnesia! that is how affected my brain is by all the treatments. for example,i just opened the fridge but did not know what to get and yesterday i switched the twins' lunches! second time it has happened since BC..

deni,

will be praying for your recovery..

Jumpship

Thanks Special K, Fluff and Hap

ElaineTherese

shelabela,

I'm 3.5 years out, and I sometimes still draw a blank. My husband's insurance forced us to switch pharmacies, and I was applying for one of those Awards Cards. For the life of me, I couldn't remember my phone number, a number I have had for the last 20 years! Also, I often rely on my students to come up with names that I've forgotten.

Glad to hear that fat grafting is working out well for you!

deni,

I didn't realize that you were having problems with one of your shoulders. Hope you heal quickly!

PeachyJeanne

HapB glad your scans are behind you. Relax over the weekend.

coachvicky

Good news, Hap.

Deni, hope all gets better.

Shelabela .... Oh the stories I could share! Here is one. I am in the office with DH working on lesson plan. I am looking off in space trying to figure out a word. DH asks if I am OK. Sure, I respond. I say that I am trying to remember that word when you advance at work but it isn't a promotion; it has to do with money. DH says, "Do you mean a raise?"

It has gotten a lot better. The Nurse Practitioner on my MO Team told me last September that my energy would be back by year's end and I would begin to notice it. She said after a year the chemo side effects will diminish, again, to the point I would recognize. Everyday I find my strength better and energy higher.

I think what keeps some of the side effects continuing is my daily use of Arimidex. I have tolerated the drug well but I can tell that I take something. I saw the Physician Assistant at my Dermatologist's office on Wednesday. I have noticed that my hair feels thin. She said I have no balding and although not listed as a prominent side effect of Arimidex, she believes (as does the two Dermatologist she consulted with) that thinning hair is an Arimidex side effect. She continued to say that they would not consider giving me any Rx for this because it would interfere with Arimidex's purpose. And then ... she said "we want you to continue with Arimidex" to make sure my cancer does not return. I felt both understood and supported by her words and the depth she went to in consulting others. She shared that in her experience, once a person has chemo their hair NEVER returns to its original state. That does not mean worse; just not back to original. She recommended men's Rogaine stating that the women's formula was weaker than the men's. Unlike using Rogaine for non chemo-related balding or thinning, once off Arimidex I can stop using it. Right now, I have started on a biotin shampoo. BTW, looking at me no one would notice my hair is thinner. I just know the difference. I realize that I am fortunate to have the hair that I have.

Happy Saturday everybody!

Vicky

KimCee

Hi everyone one,

Forgive my chemo brain if I do not remember who posted what, lol.

Hap, so glad your tests are behind you.

Deni, sending hugs for you. Wishing you a speedy recovery.

Shelabela, I do get that spacey feeling and I am not liking that at all.

Vicky..your hair looks awesome.

Speaking of hair, I am concerned that mine will never come back. I read that a lot of you started growing hair back after AC and during Taxol. I only had Taxol this time and will be 4 weeks post final Taxol this week. Nothing, zero, head and other areas of my body feel like just smooth skin. I am getting freaked. I was on one of these boards where ladies are still bald two and three years after chemo. Yikes.

GodsWithMe

Sorry for not checking in. Rljes, I hope you found the movie!

I just had my second Taxol/Herceptin infusion Thursday. So far, no major SE. I'm curious if any of you do these infusions without a port? I don't know why, but I really don't want a port..... is that weird? Treatment #1 no vein issues, #2 my vein is slightly swollen. So I'm doubting I will make it through the next 10.

Also, I know Tamoxifen is in my future, but after reading how awful that can be I think I would rather just have my ovaries removed. I already had a hysterectomy years ago. Is this not a suggested option with anyone?

So happy for those who have finished your treatment.... you give me great encouragement!