TRIPLE POSITIVE GROUP

debiann

Finishing the taxotere and carboplatin will make the rest of your treatment a lot easier. I didn't do perjeta, but herceptin alone was not so bad. I guess the main complaint I hear about perjeta is diarrhea. Do you have that side effect? Eight more months of that would not be fun. You could always ask to drop the perjeta if its a problem. Recent studies suggest the benefit from that drug is not that substantial.

BBwithBC45

Iwbt, I did not have Perjeta, but did very well on Herceptin. Had minimal side effects. It felt like nothing comparing to my 12 rounds of Taxol. I had an echo done every 3 months to keep en eye on my heart and had no issues.

Juli24

lwbt, I didn't get the impression that your doctor was trying to minimize the effects of cancer treatments. What he meant I think is that it will get somewhat better now that TC is done. I too had the horrendous diarrhea & lost a ton of weight. I totally sympathize honey. I assume your doc has prescribed an anti-dirrheal. If so, the schedule might be to take every 4 - 6 hours. Ask if you can supplement that with Imodium In between doses. When my oncologist recommended that I finally felt at least a bit more secure. Be sure you are hydrating a ton. This will pass soon hopefully. Mine did a few weeks after stopping the TC and the weight will find its way home!! Just hang on. So very glad you like your doctor!! That makes all the difference in the world. The other thing that helps me even now is to try to keep a positive outlook. You've been through a lot and it will get easier. Gentle hugs!

Iwbt

HapB, I think we are misunderstanding each other. My doctor isn't making light of the risks. Yes, he said herceptin/perjeta are a cake walk compared to TCHP. That is all nothing more. I never said that my oncologist made light of cancer treatment, only that some drugs are easier then others. I hope he is correct, because I've not had an easy go on TCHP. I've lost 30 lbs, have chronic diarrhea, and also have an underlying cardiomyopathy (arvd), so believe me I take this very seriously. And so does my doctor.

Iwbt

julie24, thank you so much for the positive post. Some days the only thing that gets me through this is the believe it will get easier.

SajeScents

I picked up my pre-filled Prolia syringe last week from the hospital pharmacy, and placed it in my fridge (as instructed). The plan was to self-inject the following week (as I had just received my Herceptin infusion that day).

Today I took it out of my fridge and opened the sealed cardboard box only to see that the liquid in the syringe (still in sealed plastic container) looked more like skim milk than a clear-to-yellowish liquid as described in the boxed insert. I called the hospital pharmacist who asked if I had put it in the freezer, but I hadn't. So, she mentioned I could return it to her, and she'd look at it. It is still in the sealed plastic container, but pharmacy is closed until Tuesday (Thanksgiving Monday).

I am just wondering if anyone else has seen their Prolia look like skim milk. Did you still inject it or have it injected that way? What do you suppose caused this? It certainly wasn't frozen. I brought it home in the package assembled by the pharmacist technician with its ice block, it was not directly against the ice there either. It will cost me $20 to get back in town and return it. I wish I had opened the box in the pharmacy...next time, I will!

Iwbt

HapB, I'm sorry to hear you are in pain and having a rough go. Cancer treatments are not for the faint of heart. Thankfully most people will never know how hard cancer treatment is. Your tenacity and spirit come through in your posts. Those are great qualities for dealing with adversity. You will find the strength and fortitude to get through herceptin and AI. Take care.

---

Juli24

HapB,

I am so sorry you are going through all this pain. It is exhausting & depressing. Will keep you in my prayers for comfort and healing. I hope you can get to your doctor quickly so you will have answers ans perhaps something for relief. (((((Gentle hugs for you too)))))

FOR ALL. I think it is so important to remember that we each are individuals. Our cancers aren't even exactly the same nor are the treatments, surgerys, side effects or none. Weight loss or gain, pain and ability to handle that pain. Personalities, responses to treatment..........there are just millions of variables. Medicine isn't an exact science. We don't all get the same treatment sometimes by choice and I believe we are all just doing the best we can. I admire and respect all you great ladies! I hope that we each can jump in here if we can relate or help someone. On the other side if the coin, much like a doctor our creed should be do no harm. We are all entitled to our bad days & you are welcome and encouraged to share what's going on with you here. Questions answered without judgment or personal prejudice and those words of wisdom will be appreciated. When you can't relate.....a hug is perfectly ok. Snippy replies based upon a bad experience - they don't help. The best help is a cyber shoulder to cry upon along with a hug while you LISTEN. I have always loved the saying "Take the cotton out of your ears and put it in your mouth!" I hope this doesn't sound harsh. There is such a good thing going here. I was off the boards for a while because of unnecessary negativity plus the need to grieve the loss of a few friends. Hoping to make many more. Gentle hugs to all

coachvicky

lwbt

Welcome and I am sorry you find yourself here. This is a great support group.

I made the decision for a double as soon as the cancer was found in my left breast. I could not have symmetry without doing so. Once the second cancer was found in the right breast, I knew the double was right.

I would think if you go double you will want both done at once. You will only have the once surgery and the one healing process.

Have you asked for a skin saving mastectomy that would remove your breast tissue and most likely nipples but save enough skin to stretch over expanders? Your breast surgeon is focused on ridding you of the cancer. A plastic surgeon will focus on reconstructing you.

My plastic surgeon marked my breasts to show the surgeon exactly where to cut so my reconstruction would work with what breast skin could be used.

Best wishes as you journey thru this.

Vicky

Kattis894

Have had a slight head ace for a few days and logged in here to be confronted with the posts on brain mets...arghh...yes, I was aware that in the targeted therapies the molecules are too large to enter the brain...but 50% developing brain mets...that is a huge number of everyone that recur..arghh...nightmare thought...with that I am following a courageous women in NY suffering from mets in her brain and now she is in remission again due to immunotherapy...well...at least that gives me some hope this morning...hoping my head ace is due to too much work, not drinking enough fluids and just nothing to worry about...(as you worry about absolutely every ace anyway).

I just realise I know so little about all of this.What Grade am I? I am not really sure in fact and so forth. Ductal or lubinal etc...have no idea really...my onc did not really go threw my pathology report as it seems some of you ladies have had it explained to you. Maybe I should just call up and ask everything, but what to ask?

Reading up on things makes me usually so scared so perhaps sometimes "ignorance is just bliss".

Iwbt

coachvicky,

Thank you for the support. One of the regulators I have work with told a co-worker of mine that I was a fighter and that would serve me good getting through cancer treatment. When she said that I'm positive she didn't mean it in a good way. But I'm going to take as a good think. It got me to thinking, each and everyone one of us need to consider ourself's a fighter.

We fight to get the right treatments. We fight to find the fortitude to go back for our next infusion knowing how we are going feel. We fight to find the strength to get out of bed to participate in life.

Skin saving surgery isn't an option because I had skin mets and my doctor and I want that skin gone.

And I would like to only have one surgery. But my situation isn't straight forward. I have an ICD implanted beneath my left (non cancerous) breast that will have to be relocated. And that will also have to include replacing the lead wires (which aren't working right and need to be replaced). Replacing the lead wires is a major surgery. They are 20 years old with lots of scar tissues cementing them in place in my artery and in my heart. I'm told it is a major surgery.

Nothing is simple or easy. It just is.

My user name Iwbt stands for "I will beat this".

Kattis894

I will check HapB but at the moment I just want to "forget" about all of this for awhile and live one day at the time...I am in terrible physical shape so next week promised myself to focus on joining a gym/spa and start focusing on getting slowly into shape with small measures. I was not fit before treatment so now I am even less fit than those that are not fit at all...:) I have joined dozens of gyms in the past ending up not going but this time I have so much motivation just staying alive so think I will find something I can handle. I also started to work full-time and that keeps my mind of cancer a bit but still so aware it is lingering around. HapB the treatment is not a cakewalk but while being treated you go threw it, I almost feel it is worse after treatment looking back and just realising "what the hell happened?" Aftercare should be so much better in my opinion, monitoring and checking. To just be on your own and contact medical if/when symptoms occur feels completely wrong. How am I suppose to know what is what? but I guess that is the hole point with this awful illness with no cure...some make it some do not and no one knows why. My next scheduled appointment is in March so guess I am suppose to just check myself every two weeks and if something strange persist for more than 2 weeks contact the medical team.

moodyblues

Kattis.  I was frightened too, in fact I had two days where I was more than a little overwhelmed because of the information (so overwhelmed that I printed the article/link to show to my MO).  Tears, fear and I couldn't shake it out of my thoughts.  Knowledge is power but, it can also be traumatizing.  May I ask how the person that you are following who did the immunotherapy is doing?  I didn't know that they were doing immunotherapy yet for BC patients.  I read several articles at the dr office where it was being used for Lymphoma patients and that it was working!  I am very interested in learning more about this, I pray that they can make it work for us too.  I am sending you warm, comforting hugs and as I am, I am hugging my own self.

Much love, Melanie

*edited as I said Leukemia instead of Lymphoma.

KimCee

Hi everyone,

I am happy this site exists. I am not happy that any of us are dealing with this. I really let my guard down after 18 years since my first bc diagnosis. This time I am triple positive and not sure what chemo I can have since I already was treated with adriamycin and taxotere. I am now 54 and divorced, so staying out of work during treatment is not an option....yuck

SpecialK

Kim - sorry you find yourself in this boat! Depending on grade and nodal status you might be able to do Taxol and Herceptin. There is a lifetime limit of Adriamycin, is the same oncologist treating you? Do you have access to those records to calculate your total dosage to date? I don't believe there are the same limitations on Taxotere, so you may still be able to do TCH, if you really oncologist feels it is warranted

T-Sue

KimCee, So sorry breast cancer is back in your life. Glad that you found this site, it's so helpful. I'm sure there is someone on these boards who can offer you advice on what chemo they received for a recurrance. Ask around.

Hugs from Colorado!

KimCee

Thank you SpecialK...no, I lived in NJ when I was initially treated. The oncologist here in FL has the records. I see him Thursday. Of course I have been googling away. As a nurse, I know better than to google

KimCee

Thank you T-Sue...hugs from sunny Florida

ElaineTherese

Ugh, Kim. Sorry to hear that the beast is back. Special K is right; there is no lifetime limit on taxotere and the other taxanes. Since Herceptin is typically given with a taxane, one may be in your future. ((Hugs))

I was just reading an article in the New York Times about cancer treatment in Africa. This sentence caught my attention:

"In the United States, 90 percent of women with breast cancer survive five years. In Uganda, only 46 percent do; in Gambia, a mere 12 percent do."

Feel lucky to live here and to have access to the latest treatments.

debiann

Kattis, you are right, aftercare could be better. After treatment ends you are a wreak both physically and mentally and not given much support as to how to get yourself back together. I feel like I have been scratching and clawing my way out of a deep dark hole for the past three years, but I'm finally getting close to the top.

Although I've always worked full time, my job was sedentary. My MO did suggest exercise would help me feel better, but I'm not much of a gym person. I tried to think what would get me moving more and came up with the idea to get a second job at Walmart. People would laugh when I would say, "I'm not here for the money, I'm here to exercise." But it worked! Stocking shelves requires a lot of bending, lifting and pushing. I didn't lose weight, but I can move so much better and have my energy back. It was also a good distraction from the dark thoughts.

Hope you are feeling better soon too.

PoseyGirl

Kattis and Debiann, you are so so right about aftercare. As Vicky has said, most of us suffer from PTSD. Today my therapist also corroborated that when I told her how I'm doing. The emotional wreckage is as deep as the physical side effect wreckage.

Iwbt and Hapb, I honestly do agree that the oncologist meant only the best in the comment that "compared to chemo, this is a cakewalk". Quite honestly, when I had a nurse say that about radiation (she said that other than the annoyance of coming in every day and possible burning, it usually was a lot easier than chemo), I was happy she said it. They are surrounded by we patients all day long and usually want to help us along and give us encouragement to get through. But i recognize what you are saying, Hapb, and I think that when each of us is in front of our doctors, we can interpret what they are saying based on our relationship with them and the greater context of the conversation.

Thanks all for the feedback on arm mobility. jumpship, I admit that while I am an active person, I haven't been stretching well. So I'm making a concerted effort to do it.

Ok, so here's another weird one!!! Burning mouth syndrome, anyone? I'm on Letrazole, and apparently, lack of estrogen can cause this in the mouth tissues. I will spontaneously get the sensation that I've scalded my tongue or roof of mouth. Last bout lasted three days. And at my dental checkup, they told me I had some inflammation and tenderness in my mouth.

We are walking freaking museums of medical oddities, ladies!!

PoseyGirl

Hey Hapb,

I get stiffness in my joints. So if I'm sitting down for awhile or getting up from bed (and forget about sitting on my legs on the ground!), I hobble like I'm 90. But then it works its way out. Exercise loosens me up too. I haven't had a lot of bone pain, but having said that, my upper mid back/spine was aching today.

As for gastric, at one point I went to visit my GP because I was feeling nauseated on and off (not enough to be sick, but just enough to feel somewhat crappy). I'd also feel bloated. I went in for an abdominal ultrasound and upper GI imaging...nothing showed up. It comes and goes, but yes. The longest bout was about a week or two. A few other times it's been a few days. You?

PoseyGirl

I have been on it for a few months now. I definitely am not having the severity of issues you are. If it doesn't get better for you in a week or two, go in and ask to be put on another AI...

ElaineTherese

HapB,

Since chemo, I have had a few mild outbreaks of IBS (Irritable Bowel Syndrome). They involve cramps, bloating, gassiness and loose stools. I have found that altering my diet during these outbreaks is helpful. For example, I don't eat cabbage, beans, or other vegetables that encourage the gassiness. I figure chemo may have messed a bit with my digestive system, and these are the after-affects. However, these IBS outbreaks began before I started Aromasin, so I usually don't blame them on it.

The lower spine pain sounds like a common reaction to an AI. I myself get a little creaky if I remain stationary for too long.

In any case, it may be time for you to investigate different AIs and different brands of AIs. I have done well on generic Aromasin, but not everyone tolerates it as well as I do. Good luck!

deni1661

Iwbt and kimcee, welcome. sorry you had to join us but this is a great place for information and support. I wish you both well in your journey ahead.

Julie - thanks for your uplifting post. Well said. It is so very important to remember we are individuals with unique bodies and different perspectives. I like to read all the information I can about triple positive but try not to freak out about what may or may not happen in the future. I live one day at a time and am grateful for the many positives I do have in my life.

Hapb and Posey - I have been on Letrazole since May and have body aches but not nearly as bad as they were when I was on Arimidix. Hapb I'm sorry to hear you have so many other side effects since starting Letrazole; I don't have any of those symptoms. I still have pain in my tailbone but it has gotten better since I did a round of steroids. I have trouble getting up when I sit for too long. I walk at least 3 miles a day and that seems to help keep the muscles from being so stiff. I was having terrible fatigue in the middle of the day so I started taking Letrazole at night. I have more energy during the day now but there are some days where I can't shake off the fatigue.

Posey, I still have cording under my arm but for the most part my ROM is good. I did 6 weeks of PT and that helped a great deal. My therapist got all but 1 cord to snap and she took care of the tightness from my recon surgery. I do the exercises every day because I found things tightened up quickly when I skipped.

Managing all these side effects can wear a person down. Hang in there Hapb, I hope your doc can find a solution to help you feel better soon.

deni1661

on the subject of mouth issues....I was getting frequent outbreaks of canker sores. Not just one but a whole mouth full. I was having the burnt mouth feeling too. My naturopath put me on daily L-Lysine 500 mg and that definitely helps. I get canker sores almost immediately if I don't take the Lysine. My MO couldn't confirm the canker sores were a SE from the AI or HP. I read canker sores come from stress. I think for me personally it's a combination of stress and a side effect of the AI. I never had this many outbreaks prior to diagnosis

Mandeola

hi everyone,

Again, new to this forum (only my second post) and I have a question....I had a double mastectomy in 2014 following discovery of a very large area of DCIS. I felt a lump in March and was diagnosed with a chest wall recurrence of triple positive BC (only happens to 1-3% of people in my situation, lucky me huh).....and am now about 4 weeks PFC and just on herceptin now. Anyways.....after my initial surgery I had a seroma drained and then developed a tightness along my arm with a line of redness running straight down. The best way to describe it was that it felt like 2 people were standing on opposite ends of my arm pulling as tightly as they could on a rope. After my surgeon told me it looked like a mosquito bite (seriously lady!?!) I insisted it wasn’t and had an ultrasound of my armpit and arm. It was normal and the feeling and pain subsided with acupuncture and yoga. Question 1 - could this be cording that some of you mentioned. I had a raised area in my armpit as well. Question 2 - I am about to start radiation and amconcerned it could recur. Is this a possibility. I’m so nervous about it. Thanks in advance for your input.

deni1661

Mandeola, I'm sorry to hear about your recurrence. Welcome to our group, this is a great place for information and support.

The tightness in your arm sounds like what I had with cording. I had 4 thin raised cords that started under my arm and ran almost to my wrist. I did not have any redness though. My PT was able to break up 3 of my cords and the last one is barely noticeable. I still do have tightness under my arm and side but I do stretching exercises every day which helps. My PT did tell me that radiation increases the chance of the cording and swelling but it could also happen without.

Meowmmy65

Diagnosed August 31, triple positive, with a very small tumor on the right side. Lumpectomy scheduled September 22, and postponed due to a broken radiography machine. Rescheduled for October 6. Ended up postponing again, and spending a few days in the hospital with cellulitis in my index finger. Ridiculously painful, and came out of nowhere. Still hurts, is red and swollen, but definitely improving. Finally home tonight.

Hoping the third time is a charm, as I'm ready to get this cancer out of my body and move forward.

My daughter read that cellulitis is common with breast cancer. Anybody else experienced it?

Bird-of-light

I can relate to the loss of sex drive. It sucks and takes mental and physical work to overcome. My onco has okayed estrogen cream, which helps tremendously with making sex comfortable. However, climaxing is a challenge. I have never questioned my gender. To me, being a woman is much more than feeling female hormones.