TRIPLE POSITIVE GROUP

Cherry-sw

SpecialK, thank you, I widh I knew what to do. I want to continue with Herceptin so badly, have some serious thinking to d

bjquilter

Hi all,

I have triple positive early stage. I've had a lumpectomy 1Sep. Still waiting to see an oncologist. Is this normal?

SpecialK

hap - it is beyond ridiculous for the nurse to say she has not heard of bone/joint pain from letrozole, it is a well documented side effect.

cherry - I don't think a time-out from Herceptin will hurt you, ask the oncologist to lay out each scenario and their benefits for your situation.

bjquilter - welcome, do you have a scheduled appointment with an oncologist?

ElaineTherese

HapB,

That's bizarre. Every visit, my oncologist and her nurse ask me about bone/joint pain from Aromasin. In fact, it's listed prominently on the sheet of side effects that they go through with me. I'm not sure I would drive two hours to visit an oncologist and nurse practitioner who were in denial.

Lita19901

bjquilter - my wait was about 6 week. I was told they wanted us to be ready to start treatment after the surgery. The wait was hard!

bjquilter

Thanks for replying. They told me the Dr. likes to thoroughly review records before she sees anyone new. Did you worry about the cancer growing while you wait! I know I shouldn't but I do.

PoseyGirl

I was diagnosed June 23 and saw my oncologist June 29. But I had chemo first, bjquilter. Since you had surgery first, they likely want a bit of healing time prior to chemo.

Hapb, I have often felt that the nurses in the chemo suite - while nice - were not super "up" on symptoms.

SajeScents

SpecialK, Happy Belated Birthday! My husband's birthday was yesterday, so we celebrated Thanksgiving and his birthday with family!

My daughter and son-in-law examined my refrigerated pre-filled syringe of Prolia and determined that the liquid was clear. They found a spot on the barrel that was clear as opposed to the front of the barrel that was painted a frosted white! So, I gave myself the injection yesterday afternoon (before turkey dinner). No anaphylactic shock, so I'm good to go! I am not feeling any more joint pain than usual (still on anastrozole), as walking or stationary biking seems to relieve any morning stiffness/soreness. So far, so good!

I met a lady a few weeks back at the hospital where I receive my Herceptin. She is receiving Xgeva at the hospital (so a much higher dose and frequency of denosumab than I am getting in Prolia), yet she does not report any serious SE on it. She is Stage IV with bone mets. She is amazingly upbeat and doing well.

Thank you for your articulate, informed posts!

SpecialK

hap - not sure there is anything to do. Also, not sure there is much they can do either. You will either have side effects you can handle and keep taking the drug, or stop. When you talk to your doc ask about switching drugs, or speak with your pharmacist and see if you can use another manufacturer. Was the nurse you spoke with an infusion nurse? If so, they don't often see patients once they move from chemo to anti-hormonals, so this individual may not be as familiar with what you were describing. If she is the doctor's nurse, that is another story - she should be aware of this.

saje - glad you were able to inject the Prolia, and that it was ok!

bjquilter

SpecialK

I see MO on the 19th.

Mommato3

Cherry, I did AC every three weeks for four infusions, then Taxol weekly for 12 weeks with Herceptin/Perjeta every three. My SEs weren't bad for either treatment. With AC: Fatigue, occasional body aches, and an awful taste in my mouth that lasted several days with each infusion. Never had any nausea or vomiting. With Taxol: Fatigue that was cumulative with each infusion and a funny taste that lasted about 24 hours after each infusion. It's a tough decision you have to make.

ElaineTherese

Cherry,

I did both AC and Taxol, and I (personally) would take Taxol every time. AC gave me serious fatigue and chemo brain. I taught college students while on AC, and I had to have my notes typed out exactly so I wouldn't forget anything. Taxol gave me diarrhea and slowed me down, but at least my thinking was clear.

SpecialK

hap - I would not necessarily expect an infusion nurse to know much about anti-hormonal side effects. Chemo side effects, yes, but as I said - for the majority of patients on anti-hormonals they have left the confines of the infusion room, and don't see those nurses again so there would be little conversation with those patients about how they are doing on the subsequent meds. I don't recall ever discussing anti-hormonals with the infusion nurses while I was taking them and still getting Herceptin.

bjquilter - once you see the oncologist it is possible that things will move quite quickly. Most MOs don't start adjuvant chemo and targeted therapies until you are fully healed from surgery - these drugs inhibit healing so this is important.

debiann

I agree about the infusion nurses, Special K. My nurses were great, they knew their job: how to give infusions, how to watch for reactions and what to do if there was a reaction. But they are not cancer experts. There were patients at my center receiving treatments for many illnesses other than cancer.

Do the side effects from AI's come from the drug itself or are the side effects from having a lower estrogen level?

Hap, did stopping the drug relieve your pain? I think most MO's are ok with a little vacation from treatment to determine if that is the source of the problem.

My MO gave me the option of starting AI'S during Herceptin only, or waiting till after finishing herceptin if I didn’t feel up to both treatments at the same time.

SpecialK

debiann - I know at my center too that there were many types of cancer being treated in the infusion room - not just breast cancer, and the nurses did indeed specialize in infusions and did a wonderful job. Side effects from aromatase inhibitors come from the action of the drug on estrogen, but some also have problems from the fillers and additives in the generic formulations. I experienced side effects due to surgical menopause at 45 from a total hysterectomy/oophorectomy that are similar to what some people experience on aromatase inhibitors - I had (and still have on letrozole) hot flashes, achiness, insomnia, fatigue, suddenly high cholesterol and osteopenia - all of that was from the decrease in estrogen.

PauletteK

Hap - what kind of infusion did you have to have Level 10 pains?

Hope you gals don’t mind I have been lurking this thread, this thread has so much information and so active, I can’t help to lurk

debiann

At my infusion center, people were being treated for dieases other than cancer too. That surprised me, at first I thought everyone there was a cancer patient, but there are other people who need medication interveneously, for example one girl had MS.

My AI side effects are just from the reduction of estrogen. I was expecting a much worse reaction because I get a rash or stomache upset from almost every drug I'm ever prescribed, but I'm tolerating arimidex well, I just miss my estrogen.

Hap that pain sounds terrible. Good to hear its improving. There must be something in that drug your body didn’t like. Perhaps you want to wait to try a different AI until after you finish Herceptin.

Bird-of-light

moodyblues, yes. The cream rocks! The Mona Lisa helped a bit, but I still had pain and friction causing sores on both of us. Ouch! It wasn’t worth the $2500 I paid. The cream plus lube makes all well. I still struggle with climax, but at least I can have a sex life. My oncogyno says i will get better with time. I have been on tamoxin for a year.

SpecialK

hap - the majority of people start anti-hormonals shortly after finishing chemo, while on Herceptin. My oncologist would not have let me wait until the end of Herceptin to start.

Soxfan75

All - I am coming up on 14 weeks PFC and I finished rads almost three weeks ago. I haven't started taking Tamoxifen yet since my MO wants me to heal from the radiation burns I sustained first. I noticed approximately 6 weeks ago that when I sit for even a short amount of time, all of my joints seem to stiffen up, including my fingers. It's much worse in the morning when I get out of bed, especially in my ankles and knees. It seems to go away once I move around a bit. I'm only 42. I go to the gym 5 days a week and try to run a couple of miles a day. Why am I so achy? I feel like an old lady.

My MO first suggested arthritis, but I couldn't have developed that all over my body so quickly, could I? Her next suggestion was low estrogen levels, but I would think that those are on the rise since finishing chemo and not having started Tamoxifen yet. I've also noticed that I've been breaking out like a teenager the last couple of weeks, which I attributed to an increase in estrogen (although I don't know if that's accurate.) The only drugs I'm on are Herceptin and Perjeta, but I've been getting those since March. I can't imagine that has anything to do with it. Thoughts?

PoseyGirl

Hey ladies on the sex topic, I missed the cream you are referring to...I need something!

Sex is not of interest to me for the most part, partially due to the pain and partly due to overall sex drive being low. If I can take care of the pain, that's half the battle

ElaineTherese

Soxfan75,

Has your period returned? If not, chemo may have fried your ovaries and your estrogen levels are low. My period didn't return after chemo; I was considered to be in "chemopause." Nevertheless, I'm on an ovulation suppressor (Zoladex) just to make sure....

Cherry-sw

Mommato3, thank you, how did your oncologist explained the necessity of AC to you? Was it the size of your tumor or Ki67%? I see that you had clear nodes, did you do it adjuvantly? I have another problem, I see flashes in the corner of my eyes and I went to the ophthalmologist who said that it is a sign of retina detachment but so far it looks fine but I experience that the flashes are coming more often the days I get infusions and right after it. I am afraid that a further regimen can cause more damage on my eyes.

Cherry-sw

ElaineTherese, thank you for your reply, I experience short memory loss on Taxol, constantly forget what to do when I am working from home.

Cherry-sw

HapB, I have been getting them sometimes even before diagnosis. Then when I was reading this thread from the beginning there was a lady, lago, who mentioned those and I thought this is what I am having. She explained that her doctor mentioned the retina and I talked to my GP who wanted me to see an eye doctor immediately which I have done and they told me that it is a sign of retina detachment but until it actually detaches and the field of view is affected they cannot do anything. It can happen to anybody I was told, it comes with age, but now when I am so attentive to everything what is happening with my body I see the flashes more often after the infusion and subsides few days after. This is another reason I am hesitating about AC, how will it affect my eyes. There was another user back in 2012 or 2011 in our thread who was diagnosed with cataract after Tamoxifen, apparently it can cause cataract.

Cherry-sw

Those of you, of us, who only received a weekly Taxol, do you feel that you did not need more chemo treatment, what was your reasoning with your oncologist? Did it feel right? Have such a hard time to decide.

stephaniebc

cherry, i got neoadjuvant AC then weekly taxol (+ herceptin and perjeta) and in hindsight i wouldn't do the AC if i could do it all over again and were given a choice (i was not). my triple positive tumor only shrunk by 20% with the brutal, brutal AC but it was almost completely gone after ONE infusion of THP and i ended up with a PCR at the time of surgery. i for the life of me cannot understand why they don't start with THP in the neoadjuvant setting in order to skip the dreaded anthracyclines should a PCR happen at the end of the taxol cycles. anyway: in your shoes, i wouldn't do the AC if your oncologist isn't pushing for it.

toughcookie_21

Cherry, I apologize if this has been mentioned, but I would be concerned that in the very unlikely chance that AC causes heart damage, you may not be able to resume Herceptin. Although it is highly unlikely that AC would cause heart damage, I'd be concerned with even a remote chance of not being able to get the full year of Herceptin. This is just my opinion. I was given an option between TCH and T+H and it was an agonizing decision for me, but most importantly I wanted to be sure I got the full year of Herceptin due to my Her2+ status.

PoseyGirl

Hi Stephanie,

To your comments about "why not Taxol first", they can't give you Herceptin and AC concurrently because of the risk to the heart. They probably don't wish to interrupt Herceptin for a couple months. Herceptin can start with Taxol and continue on.

And regarding assessment of response to treatment...it's hard to know fully how the tumour has responded until the definitive surgery and pathology. They didn't think my tumour was shrinking after my AC...in surgery it was all gone. Scans can get a decent picture, but they can't accurately indicate dead cancer.

I believe I had my best, most aggressive response to AC, so I don't think we can know which regimen will be the best for one person over another.

There's no doubt that AC sucks. And at stage 1, I realize the choice is tougher. I'd still take it, personally. I don't at all judge those that decline. As a stage 3'er, I need everything that modern medicine can offer. But I'd hate to be stage 1 and be that 5-10 percent that recur. Soon enough, tests will be available that will definitively determine personalized medicine - can't happen soon enough

On another note, a friend of mine is waiting to hear if she's been accepted into a trial. Experiments have suggested 50 percent reduction in recurrence. This is for ER positive, Her2 negative people only. And it's a 10 year trial...that's awhile, but if you get into the trial... I hope we get to see another breakthrough for our subtype soon. Herceptin was 12 years ago: we are due!!!

I have noticed I get this round shaped flash in my left eye when it's closed...maybe I'm experiencing this retinal detachment?

Mommato3

Cherry, my MO's office uses a computer program to determine the best chemo treatment based on my diagnosis and personal info. AC-THP was the number one option. If my Muga would have been low, we would have moved on to TCHP. My MO prefers AC-THP because it causes less digestive issues than TCHP. All my chemo was done adjuvantly. If I had your diagnosis, I wouldn't do AC. Especially considering the issues with your eyes. TH is still a great treatment for smaller Her2+ tumors.