TRIPLE POSITIVE GROUP
Comments
-
Thank you T-Sue...hugs from sunny Florida
0 -
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.
0 -
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.
0 -
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!!
0 -
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?
0 -
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...
0 -
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!
0 -
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.0 -
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
0 -
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.
0 -
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.0 -
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?
0 -
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.0 -
Birdoflight. I am surprised that they gave you an estrogen cream because of you being ER+
0 -
I wanted to jump in here and introduce myself. I was diagnosed with Triple Positive IDC (ER 90% and PR 95%) in Nov 2016. I had my first Mammogram and ultrasound in May 2016.They thought there might be something there but didn't mention doing a biopsy but asked me to come back in 6 months.By Nov I was stage 3a with a 12cm tumor. I was 41. I started TCHP chemo 12/15/16 (neo-adjunct).I worked full-time through the first half of my chemo but ended up in the hospital after round 4 with low counts.I then took 7 weeks off to finish all 6 rounds. I had a double mastectomy on May 18 2017 and was told I had a complete pathological response and no cancer cells were found in the breast or in the 3 lymph nodes they took out. I had TEs placed at that time.I completed 28 sessions of radiation then started Tamoxifen. .I recently had my exchange surgery on 9/21/17. I am still on Herceptin every three weeks until Jan 2018.
It has been a rough year and I didn't really do much research on my ER, PR and HER2 positive cancer.I remember one of the Drs explaining that it used to be a very poor prognosis type of cancer but with the new Herceptin and Perjeta they get a very good response. I am discouraged from what I have been reading on this thread …it doesn't sound like having a complete metabolic response and completing chemo, BMX and radiation really brings the chance of reoccurrence down to the percentages I was told (5%).I know I completed all the treatment they asked me to do and I take comfort in that I guess.
I got involved with a local support group that has been wonderful.This site has also been invaluable. I look forward to learning more now that I have more time and energy.
DizzyGirl
0 -
Meowmmy, I had two postponements of my surgery as well. First time the reconstructive surgeon had to reschedule and then lo and behold, the next week I got the flu. I was frustrated and was happy (can you be happy to have your breast cut off??) when I was finally able to finally get it done. Hopefully this time you will get an all clear to get it done!
0 -
My onco feels that quality of life is important. I was surprised he gave it to me too because he’s real conservative in his treatment. I did five rounds of laser treatment, but they only helped a little.
0 -
DizzyGirl,
I was also diagnosed at Stage IIIA. I'm 2.5 years, post final chemo, and I just met with my Oncologist last Wednesday. She says that having made it to 2.5 years without a recurrence is good, and that my recurrence chances are on a downward slope from here-on out. It's interesting that the two HER2+ women who have recurred from my July 2014 chemo board did so within the first 18 months out.
That said, I don't feel "safe" from a recurrence; I'm just too busy with work and my kids to think too much about it. ((Hugs))
0 -
I was told there was no tumor marker for breast cancer but recently found out that there is CA27.29. I see my oncologist tomorrow and plan to ask for this test. I don't think she will agree to do it as she has no faith in this tumor marker test. Does anyone have experience with this test? Thoughts?
DizzyGirl
0 -
moodyblues: it's amazing how these things change our perspectives, isn't it? Thanks for sharing your experience. Helps to know what others have gone through.
I remember when I was a teen, and my dad was battling bone cancer. He chose to have a hemi-pelvectomy... Amputation of half his pelvis and one leg to keep fighting. He wanted to live at all costs. His prognosis was never good. In contrast, I am very lucky. So I'll take each set back and triumph as it comes, smile, and move forward.
0 -
today I'm at the cancer center for my last (6/6) TCHP infusion. Then its hercepton only for 8 months. Yippy.
I also meet with the breast surgeon this afternoon to schedule my mastectomy. My medical oncologist is concerned that because my platelets (80) AND hemoglobin (7.5) are low surgery could be delayed.
Has anyone had experience with this? I'm not opting for reconstruction at this point because I will have radiation after the mastectomy and I want to reduce the risk of complications.
Thank you all for your insight, experience, and advice. It is appreciated.
0 -
DizzyGirl,
My oncologist doesn't do CA27.29 markers. I've heard that they are accurate for some BC patients and not others. Many BC patients on the Stage IV sites talk about their CA27.29 markers, and insist on tests and scans when their markers go up. For me, I'm good. I just had a clean mammo and my blood work has been fine. I have no interesting symptoms, so my MO thinks I'm still NED.
Let us know what your oncologist says; everyone's MO is different.
0 -
Welcome Mandeola, KemCee, Meowmmy65, DizzyGirl, sorry you find yourselves here but this board helped me enormously since my diagnosis. The ladies here are always there to give you very detailed answers and comfort when you feel low.
0 -
Hi, I have a question, do you know how much Taxol they administer when one gets it on weekly basis in ml per body weight? I was trying to find myself but I only find in mg but when I get mine it is in ml.
Kattis, how many Taxol infusions did you received?
I am seeing my oncologist tomorrow and I want to talk about my upper back pain that never goes away but changes location all the time. My PT is saying that the left part of my thoracic spine is locked and this is causing muscle ties, so I am doing exercises. Gosh, I think I have already bubbled about it before. BS, GP, two PT and all the oncologists I talked to keep telling me it is muscular and I used to have incidents of thoracic back pain before but it never lasted that long. In August they have ordered a usual x-ray and told me it looked fine. The oncologist I am going to meet tomorrow offered a bone scan so I can have a peace of mind but I got so afraid that we decided to wait and see whether the physical therapy would do any good. I try everything and sometimes it goes away and then it is back again, the thoracic spine does not bend in so to speak but my GP says all vertebrae are in their places while PT says they are locked. My oncologist told me that she is not worried b because my bloodwork looks fine. What could she mean there?
Anyone who had a similar problem and how did you get rid of it?
As always am grateful in advance for all your answers.
Cherry
0 -
HapB,
Isn't a mammo a scan? I just noted that I had a clean mammo. I've been getting them every six months since surgery. I have also had one PET scan and one MRI since radiation. So, even though my MO doesn't do tumor markers, I consider myself NED and "monitored."
0 -
ElaineThere, were those two people on your chemo board Her2, hormone positive? If so, then recurrence stats can be a bit different. I'm curious...
Oh, and re: recurrence, was that 18 months from the finish of Herceptin or from surgery or chemo
0 -
This morning my medical oncologist talked briefly to me about taking Neratinib (Nerlynx) for a year once I'm done with herceptin. He also said that it only improves survival rates by about 2% in late stage cancers. And that the benefit must be weighed against the sever diarrhea side effect. My doctor said that it was initially approved for early stage her2+, and recently approved for late stage cancer
Has anyone had experience with this drug? I have a few months before I have to decide. Severe diarrhea for a 2% increase in survial?
Once again thank you in advance for your experiences and advice.
0 -
Poseygirl,
Both of my chemo buddies who recurred were ER-PR-. One was diagnosed in May 2016 after finishing Herceptin in July 2015. The other was diagnosed in February 2017 after finishing Herceptin in June 2015.
0 -
Elaine, did your friends have a mastectomy or a lumpectomy? Where their margins clean? And was there lymph ode involvement?
I guess what I'm wondering is what is the recurrence rate for a pathological complete response vs a non pathological complete response vs the overall recurrence rate for her2+ breast cancer
Thanks
0 -
lwbt, the positive thing with nerlynx it seems to be able to break the brain blood barrier, but it causes severe diarrhea. I am in Europe and my clinic did a smaller local trial several years ago, I found an article that did not presented the outcomes but introduced a lady who participated and she has mentioned the side effects. I have mentioned it to my oncologist and she said that I will not get it, my clinic is not using it it seems.
Cherry
0
