TRIPLE POSITIVE GROUP

PatRN10

Thanks again. That really puts it into perspective. You guys are so knowledgeable. . I have always been an OB/ Nursery and now high school nurse so this is my first venture into the oncology world since I was in college.

SusanHG123

Pat,

I can relate as I am also a nurse. My clinical experiences were PEDS and Psych then went to teaching and administration. One of the first things I did after diagnosis was order the Oncology Nurses Certification Exam Study Guide! I read it in the chemo chair. My nurses--a couple were former students--would burst out laughing as most read something like People or just slept. I also started reading the Oncology journals-medical and nursing and stalked every oncology site. I took a journal article to my MO on my 2nd appointment. For me, really delving into the evidence-based practice helped me cope. I didn't cope well-still don't--but it helped.

Cancer has made me a better nurse and nurse educator. I so admire oncology nurses.

~susan

TonLee

Hey Lago,

I know you started chemo with Osteopenia ... wondering how that has gone for you? I just had a bone scan and I've lost so much bone over the last couple years I am now osteopenic in hips and lower spine! Despite weight bearing exercise and diet! YIKES! And my hips and lower spine have been hurting something fierce lately. (This does not run in my family at all.)

It is so strange. I used to always think mets. Now it is the LAST thing I assume.... anyway, are you on anything for it? Let me know!

Fionascottie

PatRN, I hope you get clarification on the comment above

runningcell and knmtwins, I found your comments on Herceptin and changes in bowel conditions interesting because I've been dealing with differences since chemo started and there are still issues now that I'm just on Herceptin. Painful diarrhea during full chemo, now just kind of sluggish and increases in fiber, etc. really makes little difference. This week I had a colonoscopy and for the first time ( I've had 5 or so before this ) the prep didn't work! The GI dr. found a polyp but couldn't snare it. I have to go through the whole thing again with an amped up prep. I blame Herceptin. My MO had given approval as long as the colonoscopy was in the week before my next infusion. I'm so afraid I won't get 'clean' results the next time. Has anyone else had this experience?

Fionascottie

Oops....I see you got explanations, PatRN ! A lot of posts just jumped onto my page!

SpecialK

Fiona - one of the onc nurses recommended I start a probiotic once I was on Herceptin only - you might try that.  It really helped me.  Sorry about the need for a repeat colonoscopy - eeeks!

tonlee - Hi!!!  Good to see you!  Just in case lago doesn't respond while you are here checking I believe that she is on Prolia, and I am as well.  I had a hyst/ooph nine years prior to breast cancer and was osteopenic, but stable, prior to treatment.  I had a DEXA 6 months after finishing chemo and starting Femara and I had lost enough that I was almost osteoporotic at every measurement.  I started bi-annual Prolia injections and have regained normal density.  I think lago just started and has had one injection so far.  Hopefully she will see your post and confirm this info.

lago

Pat they say when it comes to hormone positive you can't be a little bit pregnant. I'm 30% ER and aa5% PR. I'm almost 5 years out. It is not unusual if you are HER2+ and hormone negative to be low hormone negative.

Hi Tonlee! Yes I was diagnosed with osteoporosis (spine) almost 2 years ago. I'm just over the boarder. Fosamax gave me Gerd. Reclast needs to be infused and they won't do it in my foot. Don't want to risk the at risk arm so I demanded Prolia. BTW Reclast would be my choice if they would infuse my foot. If I remember correctly the last study said it does help prevent bone mets.

TonLee

Thanks SpecialK and Lago...gonna talk to Dr about the infusions....I like that much better than pills.

So, pain? Did either of you have pain?

I'm having a lot of spine and hip pain....it comes and goes...but recently it has come and stayed.

PatRN10

LOL lago. I love how you put that !!! I am expecting my equivocal HER2 to come back pos but if neg will be pleasantly surprised.

Thanks Fiona , I feel like I have things clearer now. You ladies are amazing.

Susan, I am also interested in teaching once I "retire" from school nursing. I am starting my PhD this summer !

Pat

SpecialK

tonlee - I had pain prior to BC due to disk issues.  I have had pain since diagnosis due to Femara and Arimidex, so it is hard to suss out what is causing what.  I had bad knee pain in '13 to warrant a cortisone injection into the knee - which solved the problem.  I had new and intense hip pain last fall - had lumbar and bi-lat MRIs which yielded no mets - thank goodness - but a host of orthopedic crap - thoracic bone spurs, more crumbling and bulging disks, trochanteric bursitis and fluid and stress tears in the gluteus medius muscle (the aforementioned hip pain), and some narrowing verging on spinal stenosis - so I start a month of twice weekly PT this afternoon - yay!  Not helpful in all this is that continued reconstruction issues have made consistent exercise problematic, but I would assume that you have been in the gym, correct?  Sorry you are in pain - it is no fun.

lago

No new pains Tonlee. Didn't have and SE to Prolia either. So far the only drug I didn't get a SE.

ashla

Hi TonLee!

I've had the aches and pains that accompany AI's since day I started them but they were fleeting, intermittent and most often occurred when getting up after sitting or laying in place for awhile.

This fall, at just about the 21/2 year mark my hip , my hands & general aches felt worse . My MO was betting on arthritis but ordered an X-ray and there was no sign of it. I had had my DEXA and was holding my own on slight osteopenia.

The plan was to wait till I got back in April and take me off anastrozole for a month. He said we should see very quickly if it was the med and proceed from there.

Wish I'd done it then because everything has gotten worse . My joints get stiff and many simple tasks.... Chopping, changing pillowcase etc are difficult . My back aches have meant stopping my daily 2 mile walks. Can't sit or stand for any length of time with out aching.

I'll be seeing him in a few weeks . Will let you know.

Jeeper4

I just finished my radiation treatments today and will be seeing my MO on Wednesday to discuss Tamoxifen/AI's. I am Stage 1A no node involvement. ER score of 8 and PR score of 6; HER-2/neu positive. At my initial appt with her, she dismissed the HER-2 status saying the microinvasion was just a "blip" and as most DCIS is HER 2 positive it was likely due to the DCIS rather than the microinvasion. So she did not recommend chemo or any targeted therapy for the HER 2. Maybe I am just in no-man's land on this and it is not medically indicated for my situation....or should I get a second opinion? My HER-2 status really scares me, my MO, eh, not so much.

Trisha-Anne

For those who are experiencing cramps and leg restlessness, I take magnesium and it helps immensely

 

knmtwins

Trisha-Anne how much magnesium?

Jeeper4 you are InSitu, correct? I don't think they do anything about Her2/neu with InSitu. Not sure why, if you are hormone positive they do Tomaxifen or AIs. Maybe ask 'why'?

SpecialK

Jeeper - how big was your microinvasion?

Jeeper4

Unfortunately my pathology report is not very specific. My 12/17/14 report says a single focus of microinvasion in a background of dcis, intermediate grade with solid and cribiform types. Invasive carcinoma as well as dcis are within 1mm from superior margin. After my reexcision on 2/3/15 my report says residual dcis measured .5 cm on the slide and no residual invasive tumor is seen. So when my surgeon staged me at Stage 1A I assumed I was moved to Invasive Ductal Carcinoma because it was no longer in situ. I guess I've had trouble figuring out where I fit in on this site. My treatment plan seems very minimal compared to other women with invasive cancer, more along the lines of pure dcis, yet the invasive component and her-2 status that other women are being treated for seem to not apply to me. I realize every case is different but I certainly don't want to be saying "I wish..." later down the line.

TTfan

hi Jeeper, I'm sorry you have had to enter the confusing world of small Her2 positive tumors! If your pathology report described only micro invasion this means the invasive portion was less than 1 mm in greatest dimension. It is actually a separate stage, Tmic. T1a is for 1-5mm. I have never heard an oncologist recommend targeted therapy or chemo for Tmic. There is quite a bit of controversy about whether or not to treat T1a tumors with targeted therapy or chemo. At 4mm, I got different recommendations from different oncologists, and eventually settled on the Taxol and Herceptin therapy although several of them said it would be quite reasonable to only treat the hormonal aspect of the tumor. You might well feel more comfortable with a second opinion. I got several because I found this so confusing. Her2 is scary but the very small tumors are thought to behave much less aggressively then the larger tumors. I actually sent my slides to a university center for review as well, since a couple millimeters one way or the other makes a big difference in treatment plans. They ended up agreeing with the first interpretation but I felt better anyway.

I hope you get the information you need soon to be confident with your treatment plan. The beginning stages of figuring this out were by far the hardest for many of us!

Fionascottie

Special K ! Thanks for the probiotic tip! I will start tomorrow. I happen to have a bottle of Kefir in the refrig! Unopened because I am not attracted to dairy products anymore! After chemo they were just not appealing. I keep trying though!

Herceptin effectiveness question: once we do a year on Herceptin, are the Her2 receptors destroyed? Are all our cells endowed with these receptors and cancer grows faster when the Her2 receptors are on the cancer cells?

I read recently that Herceptin uses cells that come from a line of protein cells from the ovaries of Chinese hamsters. The cells used in Herceptin are grown in a lab using this line from the Chinese a Hamsters. Of all the plant and animal species how did scientists come to isolate that cell line as being helpful? These cells were first studied in 1957. Wow.

I'll thank those scientists and hamsters tomorrow when I'm getting my infusion! Amazing.

Trisha-Anne

knmtwins - I find a good dose for me is around 350mg. You can take more, unused magnesium is passed through the body. If you take too much it can cause diarreah. Of course if you have constipation, then extra magnesium may help with that too!

Jeeper4

SpecialK and Tnmtwins-thank you for your response. This IS a very confusing world lol! My emotions really settled down after getting clean margins on the reexcision but my anxiety has reared its ugly head now that radiation is over and the next phase of treatment begins. I also recently learned that an aunt died of breast cancer a couple of years ago-my biological father's side of family--very little contact with that side of the family and this aunt in particular was estranged from that side of the family so getting any additional information has been tough...but maybe it doesn't matter other than the awareness of it and for my kids to be extra vigilant.

SpecialK

jeeper - it is also common to have increased anxiety as you exit the phase of more active treatment - it is kind of a "what now?" thing, fueled by feeling you are not doing as much to keep this at bay.  I think often this is the time when the entirety of what has happened hits you too.  You are indeed caught in a no man's land with a microinvasion - what is too little, and what is too much in terms of treatment - particularly with Her2+.  You are not alone in this - the rest of us with larger invasive components also wonder if we undertreated and have increased risk - for me it was not having rads - or overtreated and now have permanent impact or side effects.  All of this is a crapshoot, unfortunately, but take a deep breath and look forward, not back.

runningcello

Three more herceptin infusions to go. My oh my has this year been one to remember.

Jerseygirl927

I am in limbo right now as last week blood levels were off, so dr said no chemo, go to ER for fluids, that was Thursday , well I have been trying to find out every day since then if they want me back for hercepton infusion, or 3 rd chemo round? Very anxious about doing nothing, but also I could look at it as a break from chemo etc.... I hate this, still no answer from Drs office. I could scream. Just still mad that I got cancer at all, did anyone else freak, or just plain shut down mentally?

Anonymous

Jersey....I freaked before I started surgery and treatment. Ended up on bp meds, an

Anonymous

Oops sorry, an anti anxiety, and cried continually. Couldn't eat. Was losing a pound a day. Wish I could do that now, lol.

Susan...I still subscribe to Oncology Times and I'm not a nurse. My late onc used to laugh when I asked him about treatments for other cancers during yoga. There were people with lots of different things there. If I gained one thing from this whole adventure, it is that I love to research the science stuff. It is fascinating .

Tonlee-hi! Long time no hear. Glad you are doing well...sort of. I had great density when I started....it dropped after chemo but was normal and then dropped some more now with a couple spots below normal. I had one Prolia shot last October and will have another next month. I don't think I had any side effects, but I also was switched over to Arimidex last May, from Tamoxifen, and was having a lot of joint pain . Im not sure I would have have known which was which

lago

Jerseygirl927 lots of people have to delay chemo due to issues. Even my BS asked if I had to be hospitalized when doing chemo. (I didn't. I was lucky). Some women even have to cut their chemo or herceptin short…and they all do just fine. You don't want the chemo to kill you or leave you with permanent damage. You need just enough to kill cancer.

Mommato3

Jersey girl, freaking out is a normal response. Who wouldn't freak out when told they have cancer!?! I cried a lot when first diagnosed. I read so many bad things about being Her2 positive. Not being able to see my kiddos grow up terrified me. Eventually I found this thread and all the wonderful ladies here that helped me see it wasn't as bad as it used to be. I'm almost a year out now and feel great. It will get better

Moonflwr912

jersery, what Lago said. When I worried that because of my side effects my MO cut my chemo down, and I asked him if it would still work as well, he said " you have to be alive for ANY of this to work" um, yeah....... LOL and yeah, I had o be hospitalized. But I'm almost 3 years from chemo. You will make it.

Jerseygirl927

thanks gals, mo already said I was cancer free but protocol calls for this poison, I realize the her2+ is the crazy freaky part, we shall see what happens thurs if blood is good we are a go, if not we are a no? Keep me in your prayers and I add you all to mine every night.