TRIPLE POSITIVE GROUP

Jjewel

I am reading trying to catch up after being unable to the last few weeks. I had my last Herceptin mid Dec. in January all my blood work and test looked normal but I felt a tiny spot that hurt between my implant and skin. I had surgery a couple weeks ago and they removed it and another an inch away. Both tiny, both positive not clean margins at skin side. Feb 18th they are removing more skin, the implants and then radiation. I also had a reaction to the anastrozole as mentioned previously. Very disappointing.... any info is appreciated.

On a funny note, I was reading Laughing Gull, Shelabela, Big peaches referencing runny noses. My husband cannot quit telling this story, so funny. We were in Columbus at this very nice shopping area that has a Tiffany’s. It was December and I wanted to look at the pretty jewelry. The place was kind of stark, quiet and beautiful all at the same time. I walk over to the display case as the lovely woman approached to see if she could help me. I looked down and as we all were trying to find a piece to look at........yes, my nose dripped, big as life, all over her spotless glass counter!!!

The woman was so gracious, I began apologizing, searching for my tissue and babbling about Herceptin side effect. She didn’t even blink, grabbed some towels and window cleaner, acted like it never happened! So funny, not our runny noses, just where mine decided to drip. 😊

rljes

Hi Everyone, 

Homemade salsa - I wish my state had legal cannabis, but it will probably be one of the very last.  When I take it (ok illegally) it helps me sleep, relax, allows me to stretch and exercise.  Its wonderful. But illegally, you never know what your going to get.                                         Soxfan75 - I have had Sepsis 3 times (Hospitalized each time) since Oct 1st.  Its horrific. I live alone, and am so anxious that its going to return.  None of my Doctors can figure out why I keep getting it - they all agree its probably because of my "crappy Immune System". 
My MO wants me to start Nerlynx, and he said there is no way it would cause Sepsis.  (He's the one that told me before chemo that I wouldn't have any Side Effects.  He's an idiot)  On the website of Nerlynx - it states it may cause infections and UTI's. I have a few months before I have to make the decision.  But if there is a Slight chance of sepsis returning, I'll pass/ 

Magari- thx for the Effexor = hot flashes info.  My MO prescribed that to me last year and its still sitting on my shelf. I just didn't want to take a chance of Side Effects.  (either my heart races or I feel like I've taken a bottle of Nyquil when I take anti-depressants) But waking up every night drenched in sweat and having to change clothes and sheets is getting old.  Maybe I will dust off that bottle and give it a try. 

rljes

Magari, I just 'dusted off my bottle of Effexor ' and I had a note attached " caused migraines, tried twice"  bummer. 

FDwithfurkids

I’ve been on anastrozole for about 2 weeks now. Was on tamoxifen for almost 3 months before MO switched me due to side effects. I considered myself lucky that I tolerated chemo and all the other meds so well. But now I don’t know what to do. My mental health and brain are in terrible danger I feel. I have struggled with depression and anxiety most of my life. But I feel I’m gonna going to break soon. I’m so fatigued, quick to anger, and have an all around sense of apathy to everyone and everything.

Just acknowledging this puts me on the brink of tears. I also have pain. Pain like before the diagnosis. Pain that went away when the Mets went away.

I’m in a bad place right now. I see the MO on Tuesday. Almost there. Just trying to hang in there a bit longer.

AngelsGal57

Update: saw my oncologist yesterday results of PET scan showed no further treatment is necessary. Will continue Aromasin pill and see him in 3 months. All cancer markers in blood work are strongly normal.

Angelsgal

AngelsGal57

Update: saw my oncologist today results of PET scan showed no further treatment is necessary. Will continue Aromasin pill and see him in 3 months. All cancer markers in blood work are strongly normal.

Angelsgal

rljes

My Last Day Of HERCEPTIN - Glory days! That year went fast  (rang that bell - In my Head  

FDwith FurKids - I spoke to my Pharm Oncologist about my aches and pains on Arimidex, and He wants me to SWITCH to from Arimidex to TAMOXIFEN.  How strange is that?  I  hear you about depression.  I am in deep, and no relief. I feel like I'm stuck/  I'm sorry you are struggling.                                                                                                                                                                                                              Yeah AngelsGal! 

Ingerp

Congrats rljes!!! I’m three months and nine days behind you. :-)

hapa

Angelsgal - so nice to hear that! I hope you stay NED forever!

rljes - congrats! I have two more to go! Cannot wait to get this stupid port out!

Re: monitoring - my NP told me that my monitoring plan includes NO imaging whatsoever. I'm just supposed to go in there for an "exam" every six months. Like, what are they feeling for? I had BMX and my implants are pre-pec. Also had ALND. Is no imaging the norm these days? At every checkup during chemo, this same NP would put "lymph nodes were not palpable" in my clinical note despite the fact that she never even checked my lymph nodes. I guess technically it was true. But needless to say I doubt her ability to detect a recurrence via exam. I'm considering just opting out of exams altogether. They seem like a waste of my insurance company's money.

AngelsGal57

Rljes,

I had horrific leg, thigh, calf and foot cramps and wouldn't recommend Tamoxifen to anyone personally. When I was off the med for 2 months the cramps eventually went away.

There is a chart on this site that compares all of the hormone blocking medications according to SE's. I used it as well as going on the individual brand websites regarding SE's and looked at the results of the different studies and % of those in the studies that had different SE's to compare. I will find the link for you.

Home → Treatment and Side Effects → Hormonal Therapy → Hormonal Therapy Side Effects Comparison Chart

Cowgirl13

FDwithfurkids, I too have struggled with depression and anxiety and have been on meds for a long time. It was worse when I was on arimidex and my psychiatrist then added in a drug that helped a lot. The chemo nurses told me that I was an easy, easy patient. It was the drug that helped me!

If I may, I would suggest that you consult a psychiatrist to address this problem and find relief. Psychiatrists are highly trained in dealing with many different medications. Sometimes its another medication that needs to be added to what one is already taking. Sometimes a medication needs to be changed out completely.

Please feel to contact me via pm.

You are in my thoughts and prayers.

Lizzid

ElaineTherese

hapa,

re: monitoring -- I've been seeing my MO for every three months since I finished Herceptin, probably because I'm doing Zoladex. She hasn't ordered any MRIs or PET scans of my chest or body, but I have not suffered any particular symptoms associated with mets. She does do a manual exam and orders my dexa scans, to check my bone density (which has been depleted since I've been on Aromasin). Since I've been diagnosed with osteoporosis, she orders my Prolia. She is also in charge of any prescriptions that help me tolerate Aromasin better, like Celexa. Finally, she orders my mammograms, which used to be every six months but are now every twelve months.

Because you have implants, I believe that you can get MRIs every few years to check their condition, though this might be ordered by your PS. So, you might get some imaging done, just not by your MO.

By the way, can you say something to your MO about this nurse practitioner? Does she do a lousy job of manual examinations? My MO will say stuff like, "This feels like healthy breast tissue." I mean I don't know if she really has a "feel" for healthy breast tissue, but it makes me feel better to think that she's carefully examining me.

ElaineTherese

rljes,

Congratulations on finishing your Herceptin! It's a great feeling to be finished with active treatment.

hapa

Elaine - I'd say something to my MO if I ever saw him. I've been his patient for over a year now and I've had three appointments with him. One of those I asked for after my post-surgery path report came back and the nurses that went over it with me seemed to know even less than I did. I am doing follow up with my RO at a different cancer center so I might just transfer it all there. The RO will be doing ultrasounds, I guess to check my lymph nodes, and blood work in addition to an exam. So at least there's that.

ElaineTherese

hapa,

Your MO sounds like my OB/GYN! I had to get a new OB/GYN a few years ago when my old one retired. I have been her patient for three years, and have never met her. Her physician's assistant has been doing all my exams, and answering questions about a possible oopherectomy. Ugh.

My MO also does bloodwork for me; I was seeing my RO every year, but all he does is give me a manual exam and looks at my skin.

rljes

Thx Angeles - great link. 

Princess_Meg

I wouldn't stay with a doctor I don't see, just saying. I always have a long list of questions for each doctor with every visit. I saw my plastic today and as usual I had questions for him. Why will I have a doctor I can't see and talk to directly? I commend you guys's patience and tolerance, I am not that tolerant. It is bad enough to be dealing with cancer... urrrrrgh

AngelsGal57

rljes,

This chart helped me decide to do Aromasin when I got off the Tamoxifen. I put the top 3 side by side and decided

which side effects were the ones I could live with for 5 - 10 years. So far I have been on Aromasin since September and

it will be clearer which SE's were from the Kadcyla and which are from the Aromasin now that I finished the Kadcyla in

December.

coachvicky

FDwith...

As suggested, please see a psychiatrist soonest.

Your MO may not be able to correctly / fully diagnose you.

BTW, these are all normal feelings at some point...it will get better.

Vicky

xYoungandScared

Hey everyone,

I've been undergoing radiation treatment. I have 2.5 weeks left. I was prescribed hydrocortisone, and I've been using a radiation relief cream, but I have radiation dermatitis. My question is...did anyone experience the dermatitis (rashes) in random parts of their body outside of the radiation field? I have rashes on my arms, and shoulders. I plan to ask tomorrow, but it's definitely becoming a bit worrisome.

Taco1946

FD - I sent you a PM.

Homemadesalsa

Hey there Y&S- I've had a rash since June. At first I thought it was radiation related, but it's an allergic reaction to the Herceptin and Perjeta. Are you taking those too? Benadryl tabs help at night, benadryl creme during the day. I also have a prescription hydrocortisone creme called Triamcinolone, but you gotta take a break from it every few weeks or your skin gets thin. Any antihistamine helps as well- nyquil or claritin. There's a thread over in the stage IV forum with lots of info.

Only 1 more H&P for me, so I am hoping that the rash abates too. Good luck to you!

Ingerp

Homemade--just popping in to say congrats on only having one H&P left. I know you're looking forward to getting those appointments off your calendar!!

Homemadesalsa

Thanks Inger. Yes indeed, looking forward to getting stronger, having fewer weird inputs into my body. Allergy to H&P has been a bear- honestly the WORST part of the whole cancer road. MO wants me at least to TRY Nerlynx. He says that there is much success in pairing it with Colestipol to avoid diarrhea. But I am going to wait to start it until after our greatly-anticipated Hawaiian vacation in April, and then I won't put up with extended bouts of the dreaded D, even if it does reduce recurrence from 7 to 3%. I'll just ski or bike or gym that much harder.

Taco1946

Homemadesalsa - I love your attitude! My BFF died 2 years ago - 5 years after her stage 4 diagnosis. She lived those five years to the fullest - trips with friends and family - even if it meant skipping a chemo treatment. She always had a goal - short to medium -. My favorite is that she wanted to live long enough to vote to cancel out a friend's vote in 2012. She got to vote in 2016 too. In those five years she spent time with her grandchildren and traveled with us to Hawaii, Alaska and up the California coast 3 times. She saw her son marry (and cried when they divorced). She loved to play echure (sp?) and found complicated coloring books calmed her. She knew that 2016 would be her last Christmas and did she have fun. Her 3 kids and 3 grandkids were here. She is my heroine.

I take claritin in the morning and benedryl at night. Have since diagnosis. MO approved both.

Enjoy your trip!

rljes

Hi everybody - I went to visit my Dermatologist, before I started chemo and Radiation (I never took radiation) but he assured me that he would get me thru any rashes that developed.   Just a suggestion if you already have a dermatologist that you trust. 
  Homemadesalsa - my MO wants me to start Nerlynx as well.  But that's way down the road.  I need to get Arimidex under control first. Then I'll decide if Nerlynx is worth the "maybe" SE's. I already started Arimidex once and it was horrible.  Had to stop. (Severe acid reflux, bone pain, dizzy, skin crawling, nausea and Severe Rash all over back, chest and arms)  Trying to get my nerve up to start again - this time at 1/2 dose for several months. 

coachvicky

rljes

There is a forum on BCO titled "doing well on AIs" or something like that. You will find many success stories there.

Check the manufacturer of the last Arimidex you took. Go to this site: https://dailymed.nlm.nih.gov/dailymed/index.cfm and look up the "fillers" by the manufacturer. Study others and ask for a different manufacturer. I have read from others about success with the TEVA manufacturer.

You can do this! You just have to find the right manufacturer.

Best wishes,

Vicky

Shanary

A big hello to everyone. Found this site many years ago but just decided to join.

I am 32 yo stage 1 cancer...1 cm

Lumpectomy and radiation 4 years ago

Ductal Grade - Intermediate

Her2 +

ER+

PR+

Nottingham score 6-7 points Grade II

Been on Tamoxifen for 4 years

Thinking of getting off tamoxifen and not taking anything.

Anyone in the same boat? Suggestions? What to ask my doctor?

Just need some love

Moderators

Hi Shanary, and welcome to Breastcancer.org!

We're so sorry to hear of your diagnosis, but really glad you've found us. We're sure you'll find this space a very helpful, informative, and supportive place to discuss all of your medication concerns, among many other things!

Others will surely be by soon to weigh in with their thoughts and experiences with stopping tamoxifen early. In the meantime, you may want to check out the main Breastcancer.org site's page on Staying on Track With Hormonal Therapy.

We hope this helps!

--The Mods

rljes

Hi couchvicky,  Thank you for the information,  However, its very confusing to me.  I found my manufacturer, and  after scrolling for a while, found a tiny line that says "In Active Ingredients"( list 7.)  I have no idea what they are and how this information can help me, unless I order a different manufacture with different ingredients and ' go down the list and eliminate one at a time.  that would take months - years.  So obviously, I'm not understanding how to use this site. If you have a simple way of explaining how to use this site, I would appreciate it !