TRIPLE POSITIVE GROUP
Comments
-
Thank you SpecialK, I want to be sharp when I go back to work in 3 weeks. That may be part of the reason my MO did it this way. To minimize effects. I feel better now
0 -
kim - if when you start on the H only ask them to infuse slowly, preferably at least 60 minutes, 90 is even better. Some who have faster infusions (dosing instructions from the manufacturer allow infusion is 30 minutes) experience some bone/joint/muscle pain. This happened to me - I had 90 minute Herceptin infusions during chemo and never had any issues with pain, had the first H only in 30 mins and I had a lot of pain. Slowed it down the next time to 90 mins, no more problems - yay! Got all the rest in 90 mins, never had pain.
0 -
Cherry, I don't talk about this very often, but many long years ago, the unthinkable happened to me as a mother. I was torn apart with grief and guilt. The guilt stemmed from the feeling that I was failing my other child. My therapist said that trying to camouflage your feelings is not a good thing, because kids are much more intuitive than we give them credit for. They see right through us and lose their sense of trust in us - and their sense of security - when we try to play happy faces. Of course we want to protect our children, but sometimes that means acknowledging to them how really, truly terrible things are, while assuring them that this, too, shall pass. In time. Even if it feels like it never will be, because it will. Not today, not tomorrow, but someday, and sooner than you think.
0 -
ElaineTherese, you are right.
0 -
I will definitely be on top of that SpecialK, I do not want the bone/joint pain. Last go round 18 years ago I had 10 neurogen shots after each AT. The bone pain/burn for two days was awful. Thank goodness back then I didn't work, times change. So glad you were aware and knew to slow the infusion
0 -
lita19901, we tend to go the opposite, I crumble a lot, not in front of her but she can hear and understand. The optimal behaviour would be to stay positive and act normal, she knows that I am in treatment, but I am not positive, at least I do not have any breakdowns in front of her but I am sure she still knows that I am sad and scared most of the time. She does not know how to handle it. We are trying to keep her busy. Cherry
0 -
Hi HapB - oh please don't 'hold your tongue' when your Doctor says its not a SE! Say it Loud and Proud - Make them hear you! (I watch to much Grey's Anatomy) I told my Rhuematologist that taking Methatrexate made my skin crawl and legs cramp - she said nobody has ever complained of SE with this drug - Well, now there is me. Since my MO thinks he's God - I plan to tell him personally each and every SE I have with gory details.
I have a weird growth on my elbow - somewhat like a dbl elbow - Like a bone the size of my fingernail floating around - doesn't hurt - but strange. Not sure who to go to about this. As usual my BS said "not this department" (I was told to report anything different in my left arm - since nodes were removed) apparently they didn't mean it.
Special K - good to know about the amount of time for Herceptin.0 -
Hi everyone...just wanted to share my experience so far with Nerlynx (neratinib). I'm on day 9, so its early on, but the SE have been minimal. I've had a few episodes of diarrhea on days 3 and 9 (today I'm partially blaming the salad I had at Olive Garden. lol ) both days have been managed with Imodium. I'm not taking Imodium daily, am taking it as needed. Day 1 I had the medicine head feeling, but haven't had it since. I've had zero nausea, and have not lost my appetite. A couple of days I've been a little tired, but have been able to work and spent most of today shopping! I'll have labs done next week, am anxiously awaiting them, hoping liver enzymes are ok.
My MO had 6 patients in an early clinical trial, and they all completed it. She didn't hesitate to put me on it when I asked her. My insurance wouldn't approve Perjeta, so I wanted to try this. It was a tough decision.....I do trust my MO, and hope and pray I've made the right choice. I'll update once I get lab results.
0 -
I am crazy confused right now. I was reading in another cancer forum (Canadian) that cancer likes calcium to grow, and consequently we should avoid ingesting too much calcium. However, I have osteopenia already, am on AI daily, had one injection of Prolia (rx'd twice per year) and was advised by my MO to take Vit D3 and increase my intake of calcium and calcium-rich foods. It looks like a no-win situation if it is true that calcium grows cancer, or is that just a myth? I am taking Vitamin K2 supposedly to help distribute the calcium to bone and not to soft tissue. I also like Gouda and Brie cheese for the same reason.
What's the real truth on calcium ingestion and cancer growth??? Thanks in advance.
0 -
Suburbs, yay no blood clot. That's a positive. I sure hope the new round of antibiotics do the trick and heal your wound finally. People don't realize that cancer is ongoing not a one and done deal. That's why this group is so very important to me. Hang in there and feel better soon.
specialk - your trip sounds wonderful. glad you had a good time.
cherrysw - I am so very sorry for your struggles. I pray you find peace and pass that along to your daughter. I remember seeing my mother cry when I was a child and I felt so helpless. My mom was the strength of our family and when she cried that caused me anxiety. I'm not saying you should hide your feelings as I believe we must be honest with kids and communicate age appropriate information. Balance is key and maybe therapy for both of you can help.
KimCee - take it easy when you go back to work. Your health is more important so don't over do it and get plenty of rest. I'm one to talk with my hectic schedule these days but I balance the crazy work hours by skipping social activities so I can rest. My husband doesn't like that so much but then I tell him I can retire now instead of next March. That usually shuts him up lol. I am learning to make myself a priority for the first time in my life. Not easy for women but so very important in ridding our bodies of cancer.
Hapb - my MO is very interested in any SE's I may have, even those I might considerate insignificant. I agree with rljess, don't bite your tongue and let your MO know everything. We know our bodies best so any new symptom that comes up has to be related to the meds going into our bodies.
Sajescents, I have not heard about calcium causing cancer. I limit dairy but my calcium number is always in the desired range according to my MO. It is confusing and frustrating to know which facts are accurate because there is so much information floating around. I always rely on my MO to steer me in the right direction.
0 -
sorry to be off topic here- It seems like most people who are triple positive have gotten a mastectomy instead of a lumpectomy- I could be wrong about this, it just seems that way when I read people's stats. I realize not everyone may have a choice. My MO thinks I should have a lumpectomy but since I'm triple pos, grade 3 have dense breasts, tumor 4cm, I wonder why she doesn't think I should have a mastectomy? Especially if it's true that triple pos cancer comes back more often than other types. I guess I'm just wondering if triple positive should mean you should get a mastectomy because of its aggressiveness
0 -
Hi emily mh!
I had a triple positive tumor that was Grade 3 and 5 cm+ and had one compromised node. After neoadjuvant chemo, the active cancer in my breast and my node was gone. I had also tested negative for BRCA. Hence, by the time I got surgery, I opted for a lumpectomy, not a mastectomy.
If chemo had been less effective or I was BRCA+, I might have opted for a mastectomy. But, there wasn't anything to take out, really, by the time I reached surgery. The surgeon just removed a golf-ball sized lump of tissue from around my surgical marker.
I should note that I really didn't want to do reconstruction or "go flat." I have two special needs sons, and wanted to avoid multiple surgeries (which reconstruction sometimes requires). Also, I like my breasts and was happy that I could do breast-conserving surgery.
If the cancer comes back, so be it. You can always take more off later; once your breasts are gone, they are gone.
There are many BC patients here who took a different path. Maybe, they had multi-focal tumors or just want the peace of mind of a bilateral mastectomy. Some like the idea of no more mammos; some (like Vicky!) were happy to get new boobs out of this awful diagnosis. But, I just wanted you to know that some of us did opt for lumpies! Best wishes!
0 -
Elaine- thanks so much for your post! You sound so upbeat! I needed to read that! I am scheduled for a lumpectomy on the 28th and it's what all 3 of my doctors suggest- I think I'm just getting nervous as the day gets closer. Thanks again
0 -
Good luck with your lumpectomy! I hope you don't have any complications. I went back to work (half a day) the day after surgery, and that wasn't the brightest thing I've ever done. I had a drain, and I didn't realize that the more you move around, the harder it is to reduce the flow to the drain. It took me three weeks to have that sucker removed! Hopefully, you won't need a drain, and you can get back to life quicker.
0 -
deni1661, thank you for your reply, I know exactly what you mean, whenever my mom cried I just felt guilty and helpless, whenever I cry right now and my kids see it I feel guilty, there is no easy way out of it. And no use complaining either, it did happen to us, no other family but us and we have to deal with it. I want to act normal and keep daily routine ad close to normal as possible, some people manage it, I am, as you said, struggling, I cannot follow to some activities, I stay mostly at home, it is my fault I know, I am waiting when the quantity finely turned to quality and we will find a new normal and I will become more stable and stronger. It takes time, I am complaining here and to my counsels, ni other outlet, but very thankful for what I got. For any piece of advice or kind words.Cherry
0 -
emily_mh, I could not opt for mastectomy, my clinic does breast-preserving surgery if possible. In terms of survival mastectomy is equal to lumpectomy+radiation. Even if you remove the breasts there will be still some tissue left. My tumor for example was located above the breast, almost on the same lever as the armpit. I also red that breast glands can be found up to your clavicle and even towards your back. But I understand those who choose the mastectomy for the peace of mind but this is major multiple surgeries compared to lumpectomy. I am awaiting the results from genetic testing, if I test positive I will try to pursuade my oncologist and the surgeon for mastectomy but majority of those who test positive for the genes do not get bc according to my BS Cherry
0 -
cherry, thank you for your post, I keep telling myself the same thing, there will still be breast tissue left even after a mastectomy. And I agree with Elaine, that I can always do a mastectomy later. I really am at peace with my decision(mostly) it's just a gamble I have to be ok with.
0 -
emily_mh, good luck
0 -
3 days post op. Just realized my upper arm is numb. I've been keeping ice on the incision (which is almost in my armpit) so I thought that was the cause, but it is not. Anybody else have that happen? I assume that will go away eventually?
0 -
meowmmy - your arm numbness is common and should gradually resume some, or all, feeling, but be patient as it can take a while. You may feel a pins and needles sensation as those nerves regenerate, this is normal too. I found that wearing something with a sleeve made that sensation better - skin to fabric was better than skin on skin.
0 -
I had a lumpectomy on 10/20 , after my oncologist said everything was gone and my breast surgeon did a breast mri that came back clear. 1 week later my breast surgeon called when the pathology came back without clear margins, there was def still cancer present. The did not even suggest radiation, just a mastectomy now. I had to make appointments last week to see a Deip flap reconstruction dr and an implant dr. They say I won’t need any radiation after but I hardly trust that answer now. I have surgery now scheduled for 11/17 but my insurance called on Friday and said that the dr I chose ( deip flap) is not going to be covered by my insurance- when tne drs office assured me they would be- so now I have to find a new plastic surgeon and I’m not going to postpone surgery. If I have to have no reconstruction at this time I’ll have to do it later when I find a new plastc surgeon.
I am opting for a double mastectomy after all of thIs.
0 -
Thanks SpecialK. Why don't they warn us about the after effects of all these procedures? If I hadn't read about what to expect in forums like this, the healing process would be more worrisome. The blue poop probably would have scared me!
0 -
I am also experiencing SE’s...just not sure from what? Herceptin or Anastrozole? I feel like an 80year old woman ☹️ I now have knee pain ( unrelated to an injury) that I never had before. It gets worse with exercise. Also the joints in my hands ache, worse in the morning. My previous neck arthritis is much worse since I’ve started meds. I tried Celebrex but had a face swelling reaction...and now Advil but it only helps my new headaches. Still dealing with a large hardened sore seroma which I thought my body would reabsorb and lymphedema. Quite frankly, all of these extra side effects add to the struggle of recovery. I feel so frustrated when I tell those who ask how I am doing now that I am doing well when the truth is...I am trying to manage this new difficult reality daily.
0 -
LTWJ- I'm sorry to hear you did not have clear margins. I'm glad you have a plan and will go through with double mastectomy and figure out reconstructionlater.
0 -
Emily, if I were in a position to have a lumpectomy again, I probably would have. I had one 18 years ago and for 18 years was fine. If lumpectomy didn't require radiation it would have been ideal. I am now sorry 18 years later that I had a lumpectomy back when I did because I was diagnosed with a new cancer and my skin is not as elastic on the side that was radiated. If I went for the Flap surgery that would have been better but it required a longer recovery time and I just can't be out of work that long. So I am doing tissue expanders and it is not comfortable at all. Lumpectomy, I was off the table and raring to go after surgery. Not sure how large your breasts are right now, but a 4 cm tumor and margins...just want you to be happy with the results. My tumor and breasts were small so my bad breast was only a tiny bit smaller than my other one back then.
LTWJ - so sorry you did not have clear margins. I am glad as well that you have opted for double mastectomy. In my head, I felt, just get it over with an take them both. Wishing you well with your upcoming surgery.
Deni...I will not over do it when I go back to work
I hear you on that for sure.0 -
Jagger - I'm guessing your "arthritis" type symptoms are AI's. At least it was for me. I did fine when it was just herceptin. 6 months into AI's, I take claritin and extra strength tylenol routinely. Have continued the Calcium with vitamin D and Chrondosen and Glocesimine (know I'm not spelling either right but the spell check isn't helping me.) that I did for my arthritis before. My pain is manageable with the above. My goal is 2 "stretch and flex" classes and 18 holes of golf a week and at least one walk a day with our terrier. If you haven't found the AI thread on this site, I suggest you check it out.
0 -
cherry - sending hugs across the pond. We're here for you all the way. Better days are ahead, I promise
0 -
emily_mh, I had to have a mastectomy because I had two tumors far apart on my small breast plus enhancements on the outer quadrant. My BS didn't want to take a chance that any cancer cells would be left behind to get into the lymph system. Both my BS and MO said for me, a lumpectomy would raise the risk of recurrence significantly because so much of the breast was affected. I think the doctors aim to preserve the breast whenever possible so if lumpectomy is an option, they are in favor. I also think the recommendation is different if there is lymph node involvement. There is so much to consider when making the decision so don't be afraid to ask lots of questions. Good luck with your decision.
LTWJ - I am so sorry your margins were not clear and you now have to go back for a mastectomy. I don't blame you for not feeling confident with the answers you are getting, the whole situation is disappointing. I don't understand why your insurance won't cover the DIEP because it is a reconstruction option, not cosmetic. Mine was covered without question and my PS is out of network. I think for peace of mind it's good that you're going ahead with the mastectomy now which will allow you time to find a PS that is covered by your insurance. Best wishes for your upcoming surgery and finding a new PS
Jagger - my guess it's the Anastrozole causing your pain. I had terrible pain on Arimidix and could barely function. I tried to keep exercising thinking that would help but it didn't. My MO switched me to Letrazole and while I still have muscle aches, it is nothing compared to Arimidix. Maybe your doctor can switch you to another AI? Have you tried PT for the seroma and lymphedema? I had some relief when I was doing PT and my therapist taught me a number of exercises that really helped. I have found most people think I'm "all done with cancer" when like you said, the SEs are another challenge we need to work through. I hope you find relief to your pain soon.0 -
dni1661, insurance will cover the deip flap surgery, just not the plastic surgeon that I was referred to by my breast surgeon. They swear they are the only ps in tne area that perform the procedure but the insurance company says there are others. They’re all still hashing it out they tell me.
0 -
GingerChi, thank you for your update and please keep posting your experience, there are people on this thread who are considering starting nerlynx.
0
