TRIPLE POSITIVE GROUP
Comments
-
Hello to all the triple positive group. I have been searching this site for a group that fills the void left by the Radiation group I was with who all moved on to different places. I have been encouraged by all the positive conversations and very helpful information and just had to respond.
I have been off the site for awhile and come back to add my 2 cents of encouragement to the list. I am having great results on Aromasin and only bothered by insomnia (take Melatonin), neuropathy in my finger tips and toes, and shoulder aches. It is all manageable and much better than my experience on Tamoxifin which was a nightmare.
My Oncologist has been excellent. He is very happy that I am an avid researcher and keep up on advancements. Has anyone besides me heard about the use of Metformin to boost success rate of non-reoccurance in Her2 triple positive BC?
Angelsgal57
0 -
Hi everyone -
AngelsGal57 - no I havn't heard of taking Metformin - my MO has suggested taking NERATINIB after my last Herceptin (next week -yeah) but after speaking with my pulmonary Dr - I found I cannot take immune suppressants with Neratinib. So I have a decision to make : either take a 3% reduction in reoccurrence of cancer with Neratinib, or take an immune suppressant and keep my lungs from developing infections. I can't have both. I am so glad to hear Angels that you like your MO.
I am so sorry to hear of SE's with Herceptin - BUT I'M NOT CRAZY! I've been telling my MO of my SE's with Herceptin and the *ss that he is - keeps saying there are NO SE's with Herceptin. My SE's are minimal, but they are real, and you gals have verified this.
Keep warm Shelabela - Here in Indy, we will be -35 windchill. Not as bad as Iowa. But still! My Hot flashes are coming in handy. Ha.0 -
shelabela please stay warm. My thoughts and prayers are with you that you won't lose power due to the conditions
To the rest of you who may be in the path of this nasty winter storm my prayers are with you also
0 -
The only se I had with Herceptin was heart failure but most of you already know that story. I love exemestane after the hell of Tamoxifen. Half the hot flashes and headaches. My knuckles are stiff/swollen but not a big deal.
0 -
Be safe all of you in this weather.
0 -
So cold!! I hope you stay warm!! Thanks for the report on herceptin. I had my first round today of taxol, perjeta, and herceptin. I am flying high on steroids right now but expecting to land tomorrow. My MO and nurses tell me it is not as bad as A/C which was horrible. Praying they are right.
Annie
0 -
Annie you got this.
Drink a ton of water and make sure you walk/ exercise some, even on the bad days. I did ok on AC except for one bad day (day 3 post-infusion) per session. TPH was a different animal: fewer obviously bad days but a lingering malaise and head cold. Nyquil was my friend. Keep moving and this board can bring you emotional and informational relief.
0 -
A/C nearly did me in. 10 days of really bad SEs. I am four weeks out from the last one, and still have dry heaves. I am also on the "Starting Chemo in October" board which has been very helpful. If TPH is as bad or close to being as bad as A/C, I will not be able to do it every week for 12 weeks. Thanks for the encouragement. Helps to know we are not alone.
Annie
0 -
Yeah, my nose drips all the time, with no warning. I'll just be talking with someone and there it goes. As side effects go, it's not awful, just a bit embarrasing at times.
0 -
laughing, my drippy nose lasted about 6 months after last infusion.
Annie. I hope you find THP easier. I actually had THP first then AC. Drink plenty of what every you can handle. We are here for you.
My place of employment had told us to stay home today! Temperatures are -31 with wind chills of -68.
0 -
Annie,
I also did AC then THP. AC hit me like a truck. THP gave me diarrhea on Day #3, and Imodium became my new best friend. But, I felt more clear-headed on THP and more energetic. Hope you do better on THP! ((Hugs))
0 -
It is so cold in North Alabama that my plastic-surgeon-created and Vinnie-tattooed nipples are erect.
Just sayin'
Stay the course, ladies. You are stronger than know. Soon treatment will be in your rear view mirror.
Vicky
0 -
AngelsGal57:
Your oncologist sounds like the kind of doctor I like. One facility I had a consultation with, which is a well known breast cancer treatment facility here, gave me a packet and in it it advised patients not to research online.
That was a massive turn off to me. I understand that a lot of people look things up online and become frightened by what they find due to misinformation, incomplete information, context, or reading comprehension but instead of telling people not to do their own research, I think clinicians should be willing to work with the patient and sit down and talk about the things the person found that they have concerns about. It should be a collaborative learning process.
I have other health issues aside from cancer and if I never did any research and left it all to the doctors, some of those would have gone undiagnosed and untreated.
0 -
One of the things that helps me tremendously is one of my dearest friends used to be an Oncology nurse in the very office I go to. She helped me to choose the right Dr for ME and helps me navigate through all the SE's and issues of treatment. She now is working in the Clinical trials dept finding patients for various OB/GYN, Cervical and Urterine cancer trials. I will find the article on the study regarding Metformin and pass it on to all of you.
Angelsgal57
0 -
Here is an article posted in 2017 on this site about Metformin and 2 others also.
https://www.breastcancer.org/research-news/metform...
http://www.cancernetwork.com/her2-positive-breast-...
https://breast-cancer-research.biomedcentral.com/a...
So sorry W3 that you have had difficulty with your Doctors. Because St Joseph Hospital in Orange California is a teaching hospital I think it makes them more open to advances that are reported. I only take as credible those studies that are from noteworthy sources. I will admit the one study I note above is about effects on mice. I still found it very interesting.
Hope this helps and gives hope.
Angelsgal57
0 -
I am her2 +++ and TCHP for treatment. I had my 3rd chemo today and get herceptin alone for 2 weeks after. Today my onc felt my tumor area before treatment and said he feels residual tissue? Can this be determined before al 6 cycles of Chemo. He said that is what surgery after will eliminate and there should. Not be surviving cancer cells so I do not know what to think.
0 -
coachvicky,you always make me smile, but today you are killing me...I am rolling
Thanks shelabela! Geezzz 6 more months....as far as side effects of cancer treatments go, a runny nose is nothing, but it has been more than a year now, and it does get in MY nerves. I can't stand it any more. I carry around in my bag a big box of tissue -not just the little, portable package of Kleenex, but rather the big box. With the little package, by the time you get the tissue you will have already left a puddle in the floor. I literally can't go anywhere without it. I need tissue in my hand at all times. If I am walking around the office, and someone stops me to say something, before the person starts I need to go to my desk and grab one. I take antihistamines and they help just a little bit. I will try the Tylenol
Hi AngelGals, thanks for the articles, I am going to read them. How did you get Kadcyla? Were you part of the Katherine trial? I will have my last H+P tomorrow and I am terrified of recurrence, wish I could get Kadcyla, but they wont give it to me now. Recently went to MSK for second opinion, to ask about it (my MO suggested it) and the answer was no. There is a big hunch that it would help, but no definite data, therefore insurance wont pay for it.
homemadesalsa, glad to see you here, how are you doing? You must still have some H+P to go, right? Have you discussed Kadcyla with your MO? I also exercised regularly with AC, and it was the thing that helped me the most, particularly being out and about and getting fresh air -this week definitely not the best week to do that. How are all these races, girl? You are an inspiration to me.
el7277, you wont be sure until surgery if there is residual disease. Clinical examination is an indication, but until the look things up under the microscope they won't be able to tell for sure.
Everybody please stay warm!
0 -
Hi ladies, I hope everybody is doing well?
Vicky, your last post cracked me up.... I want to ask, why were you not offered Nerlyx? Was it because your nodes were negative? I am getting my 12th H today, will be done in June and my MO has already discussed Nerlynx for one year, he said no to Kadcyla.
Laughing, were you offered nerlynx?
Ladies who had nerlynx can you kindly share SE you experienced with it?
Stay warm, it's crazy here
0 -
Hi Laughing Gull- thanks for asking. I have ONE MORE H+P to go. I thought I had 2, and yesterday's MO visit he said just one. He also told me that I was doing the best (!!!) of all the patients in his practice, which was nice to hear. Am ready to get rid of my HP allergic rash for sure.
He also said that they (the medical establishment) figured out how to deal with the big D SE for Nerlynx through use of the drug Colstipol. So he wants me to at least start Nerlynx, see how it goes. My IIIc and triple + status make me right in the cross hairs of beneficiaries for the drug. I did just skim through the Nerlynx thread on BCO- it wasn't encouraging, to be honest. I just want to get back to normal, but I suppose it's going to be a new normal. Changing recurrence rate from 7% down to 3% is enticing, though, if I can handle it. I was not offered Kadcyla, which seems to fit, after a year of HP.
0 -
I'm set to go on Nerlynx too, and while I know some people have a terrible time with it, I'm just going to dive in and hope for the best. If you read the anastrozole threads or really any thread on hormone therapy, it's all people having a terrible time with it and folks who are cutting their pills into halves and quarters because they're afraid of the side effects. But I've had very few issues with the AIs. If you have no problems you have nothing to post about, I guess. I joined threads for chemo, radiation, surgery, and anti-hormonals and the only one I've really posted in was the chemo thread. I just had so few issues with everything else. Worst case scenario, nerlynx sucks and I stop taking it.
In other news: I've got two herceptins left (I'm not doing perjeta) and have scheduled a port removal/recon revision for May 22. I'm getting my implants replaced with lower profile implants. Going from Mentor moderate plus to Allergan low plus (most likely). Can't wait to get these torpedoes out! And the PS will just tunnel up to remove my port so no new scar to baby for another year.
0 -
Hi all - have not been on BCO because I was in Hawaii! Not saying that to make anyone feel bad, rather want to inspire you that there will again be fun vacations on the horizon for those in active treatment now! Wanted to add that I did receive Metformin from my MO - but not initially when I brought it up myself. My MO asked me to chat with my primary care about it - I also have a blood sugar issue from a number of years on a statin, so kind of qualify for it based on that, but the PC didn't feel like my blood glucose was high enough (it is in the pre-diabetic range) and my A1C was in the normal range. When I raised the question again later my MO didn't hesitate, but I think this is due to more study info coming out about the potential benefit. I am also on aspirin (81mg daily) for the same reason.
0 -
Welcome Back, Special! I hope you had a ball!
Princess ... Nerlyx was an early on offering in my treatment. My MO said he over treated me and what small amount of difference it might have made was not worth it in his opinion. I am happy with his approach. I saw Special's MO for a second opinion and he confirmed my treatment was spot on.
I think the thing to remember is that it can be a little different treatment for all and look WE ARE ALL STILL HERE!
So happy to read the progress of all. One day at a time ladies.
Glad Princess and Laughing you got a smile from my post. I remember before BMX I was so self conscious of "nipple erection." I think the reason I got skin nipples was to apologize to the first ones for concealing them in cold weather and under sheer garments. Not any more. Had I known what my future was, I would have proudly shown my original ones like "rats of a rafter!" The things that I have learned.
Vicky
0 -
Laughing Gull,
Last May I completed my one year of Herceptin having started it in May of 2017 and was off treatment for one month. Then in July did a PET scan to see where we were at even though my blood tests all showed NORMAL levels. There were 28 lung nodules with 1 mm specks of cancer as well as in one lymph node. Nothing big mind you just cells.
So he put me on 6 rounds of Kadcyla and in Oct 2018's PET Scan showed the nodules had either shrunk considerably or had gone completely there was no Lymph involvement and we decided to do 8 treatments all together which ended Dec 2018. I just did PET scan to see where we are now and will find out if the remaining cells are gone. My dr is confident he can push it into remission.
Hope that answers your question. I am hopeful that this has worked.
Angelsgal
0 -
Hello everyone, I just found out today that my insurance will cover Kadcyla. I will be switching to it from herceptin with 8 infusions remaining. At this point, I think a wet/drippy nose is the only side effect I was experiencing. Well, also the drops in my LVEF which had me in for a cardiac ultrasound this week. The diarrhea had settled down.
I understand Kadcyla has a chemo component to it so I'm wondering if anyone can comment on what the side effects for them have been when switching from herceptin to kadcyla?
Thank you!!
0 -
Angels--all good thoughts your way. Let us know when you get test results.
0 -
Angels -ditto; hopefully Kadcyla blasted those little bastards for good. I had quite a bit of cancer left after neoadjuvant chemo plus (H+P), both in the breast and in my lymph nodes so I have been asking about getting Kadcyla, but not approved as adjuvant after H+P, so I am not getting it. Trying to get Neratinib instead.
SpecialK I am so jealous, Hawaii sounds great. Welcome back.
0 -
Hi Everyone - I am very interested in Nerlynx (Neratinib). My last Herceptin is this Friday, then my MO wants me to start taking Nerlynx. There is a thread I was directed to = I wish I never got on it. But so many said "Colestipol was a game changer". As hapa said, if Nerlynx doesn't work, she'll stop. Me to. Since I'm having issues with Anastrolzole (Arimidex) I think I will wait to start Nerlynx until I get my Arimidex straighten out.
0 -
I was on 8 rounds of Kadcyla begining in July 2018 and I just finished the last one Dec 21. It does have some similar effects to chemo but for me they were minimal. the biggest one was fatigue, just bone tired. No hair loss, or nausea, or bowel issues. I did have dietary issue of loss of appetite.
So glad you were able to get Kadcyla. Insurance companies can be difficult to navigate when your dr wants you on a certain round of treatment and insurance says NO. ho is trying to save your life...your Dr. Insurance is just trying to save themselves money.
I hope you do well on it!
Angelsgal
0 -
My suggestion for the diaherra after Herceptin is to make certain you are cleaned out before the infusion. I took miralax and probiotics daily and a laxative the day before if I needed it. And prunes were my friend. Never needed the imodium. The drippy nose sounds awful. I took generic claritin in the morning and benedryl at night and missed out on that SE.
My father was an insulin dependent diabetic and my primary has watched me for years. At my first post-chemo appointment, he said I was a little high and he would recommend metformin if I could manage another pill. I hadn't seen the studies referenced here but he agreed that many of his metformin patients seemed to have less joint pain which I had also read (although I don't know where and he didn't know why.) Anyway, I have taken it for about 15 months. Weight is stable without many diet changes and I feel good.
I know many of you have really cut the carbs and I admire you for that but it isn't in the cards for me right now.
Be careful with the weather. Sounds awful.
0 -
Angels. Glad the pet scan showed results.
SpecialK. No fair high didn't take us with you!
Coach, speaking of nipples 😁 i only have one and that damn thing stands up and out all the time.
0
