TRIPLE POSITIVE GROUP
Comments
-
posey - it is hard for me to answer this due to being a frequent flyer in the operating room, makes me non-representative - I had bi-lat SNB, and right ALND. I have more mobility in the SNB/ALND arm, no pain, with 5 surgeries. SNB only arm has less mobility - but that side has had 16 surgeries, however I have no pain on that side either.
lwbt - if your WBC is stable I would also advise that you add a probiotic now that chemo is done - it made a world of difference for me. Energy generally returns noticeably at about 6 weeks PFC. Are you continuing on Herceptin alone, or also with Perjeta? Also - a disclaimer, having no reconstruction does not preclude complications, mobility issues, post-mastectomy pain syndrome, or lymphedema. Not trying to encourage or dissuade one option or another, just wanted you to be aware of that.
0 -
hap - couple of possibilities on why AIs cause joint pain. One is that the drug action causes a recognition of pre-existing joint/bone pain because of the decrease in estrogen - so if you already had arthritis or disk issues (I have disk degeneration that was pre-existing) it feels more pronounced due to less estrogen lowering the pain threshold. Less estrogen also causes a release of proteins that can hasten bone loss and joint "aging" which can cause pain, and can also possibly cause the breakdown of cartilage so there is less bone to bone cushioning. I am not sure you have been on letrozole long enough for that to be the case, but you may be experiencing the a heightened pain sensation due to less estrogen circulating. Having less estrogen can also incite an inflammatory state with these same proteins (cytokines), particularly in the joints. These things happen naturally with age as we become post-menopausal, but can be exacerbated by the lessening of available estrogen when taking AI drugs. There is the possibility that supplementing with vitamin D, calcium, glucosamine and chondroitin, MSM, or using NSAIDS can help. Also, acupuncture and exercise may help. I have found the more I move the less pain I have, and I have noticed improvement in joint pain with an anti-inflammatory diet. Many report that there is an initial period of joint pain but if you can get through it the pain dissipates the longer you are on the drugs. I would also advise that if you have issues on one brand or type of AI, try switching drugs or manufacturers - the additives and fillers in some of the generics cause trouble. I had more issues on generic arimidex (anastrazole) than on generic Femara (letrozole).
0 -
lwbt, sorry I missed that you mentioned chemo starting in may. The elimination might not help at this point, but I do know that even just the gastro issues I had from only herceptin also improved with no dairy. A probiotic might be more helpful as mentioned already. I felt fairly decent about 4 weeks out but surgery, radiation and a couple of bugs have really worn me out. I’m hoping I start feeling better soon. This is just such a long process being a triple positive. Hope things improve for you
0 -
Now that I am through with chemo and only have the 6 Herceptin treatments yet to complete, does anyone have any ideas as to when they will put me on the AI's?
Thanks!
Melanie
0 -
I just wanted to mention that i had to hold my breath during radiation. It was left side and that was.the only way to keep my heart out of the way freaked out during radiation I lived in fear of accidentally exhaling...
0 -
Thank you everyone. I appreciate the advice and insights everyone provided. I know it has only been a few months that I've been on this journey, but some days it feels as if it will never be over. Or I think about how much is left.
I will continue with herceptin and perjeta for another 8 months. My oncologist says herceptin and perjeta are a cake walk compared to the two chemo drugs I take. I hope so.
0 -
LWBT, welcome to a great forum, so sorry you had to join! I wanted to weigh in with my perspective. I needed a mastectomy because of two tumors in one breast. I opted for a BMX so that I never had to worry about recurrence in the "healthy" breast. I figured I would have one surgery, one recovery, one season of chemo. Also, I was able to do reconstruction with a small body mass (5'5", 120 lbs). They didn't have to use fat grafting, just tissue expanders and, soon, silicone implants.
Posey, my range of motion has returned to normal since my BMX in April. I dutifully did all the stretches recommended by my physical therapist. Hope you find relief!
0 -
moodyblues,
I started my AI after chemo and surgery. My MO liked to do things one at a time.
0 -
I am 43 yrs old. Found tumor end of July, had lumpectomy 2.8 cm plus 2 satellites, node negative. Had 2 more revision. Started chemo yesterday. I thought I was getting tchp but doctor feels based on a research done. That the increase in benefit of pertzamub is only .7 Is not worth the risks. Any thoughts?
0 -
carrielynn,
Many women are/were successfully treated for triple positive breast cancer without Perjeta. I think it will be awhile before we really know the effectiveness of Perjeta for early stage breast cancer as it is a relatively new drug. Best wishes for chemo with few side effects!
0 -
Thanks everyone for the info!
0 -
hapb,. My doctor isn't an insensitive jerk. All he meant was that most people tolerate hercepton and perjeta better then taxetere and carboplatin. TCHP has been rough so logic says removing two drugs from mix has to be easier. All i know is that it cant be worse.
0 -
moody - I started letrozole a month after I finished chemo, while on Herceptin.
lwbt - you may continue to experience GI distress on H & P as both of these drugs have that as a side effect. I had this issue, but the probiotic solved the problem. I did not have Perjeta as it was not yet FDA approved for early stage at the time I was treated.
0 -
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.
0 -
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.
0 -
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!
0 -
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.
0 -
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.
0 -
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!
0 -
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.
0 -
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
0 -
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
0 -
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".
0 -
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".
0 -
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.
0 -
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.
0 -
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
0 -
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
0 -
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!
0 -
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
0
