TRIPLE POSITIVE GROUP

deni1661

Kattis, I understand your worry. In one way it's good to have follow up but it is definitely a stressful experience and I guess it will be forever. I don't know how anyone can ever be calm about these appointments

Sending prayers and good thoughts your way for clear results!

Cherry-sw

deni1661, I see you do not have any chemo stated, didn’t you do any? Was it a clinical try

Cherry-sw

HapB, as Kattis stated we pay a lot of taxes, but I love Sweden. It is also quite cold here during winter and fall and most of the spring but the summer is the best when and if it actually happens. I love Sweden, I am so glad I moved here. Well, it is not easy to immigrate here but it surely easier for an American who can get a job here first or marry a Swedish citizen. When you say homogenous do you mean people or nature

Cherry-sw

HapB, well, Canada would sound better for immigration for an American, no language barrier, it is close, but I am not familiar with the immigration laws there. Sweden during past decades took a lot of immigrants mostly from conflict-affected areas, persecuted dissidents from totalitarian regimes. There are a lot of people here who are not native swedes but it is vary from the US because the immigration as process is relatively young. The government is doing its best for the integration but there are some segregated areas especially in the major cities. Swedes in general (Kattis lol, I consider myself being more Swede now) are reserved people but very compassionate, friendly, I would say harmless, their approach to parenting is one of best in the world, they are so kind with their own children, very patient, therefore the children are treated in the same way in both childcare and school. Children's rights are also stipulated by law that is diligently followed. I mean they also have children laws in Russian, right. I always step up in the conversations when Sweden or Swedes are criticized often by the those who are not the natives ( and for some reason were eager to come and stay here at any cost) telling them that the approach of Swedes, yankees, Russians whoever being bad is defective because there are a lot of jackasses doesn't matter where they have been born but in my personal opinion they are far less in Sweden. So, did I manage to sell it you?

coachvicky

Kattis894

Yes, you CAN TAKE THIS! Look at how well you have done!

I will keep you in my prayers for a great scan outcome.

Vicky

coachvicky

Cherry ... sent you a PM! Loved your post about the meatballs.

Vicky

Jumpship

When I found my tumor I had a bump in my shoulder blade on my back that 'clicked' or moved when my husband massaged it. It had a dull pain unless massaged and then I realized how constant the pain was. Pet scan before mastectomy didn't light up any nodes in the back. Now 3 years later I'm realizing that this pain never went away and isn't better. MRI in two weeks. If it's cancer I guess it will show up? I kept thinking it and the frozen shoulder were post-surgery pain since it gets better with every reconstruction but then I realize it's still there and pt and acupuncture have helped with shoulder pain but not that spot in the back. So now I'm counting the days until the scan. While you can't do anything it helps just to 'say' it outloud

Cherry-sw

Hi, my latest update after visiting my oncologist. Sorry for the long post and I understand the lack of interest but I have to pour it out somewhere.

My oncologist thought we were already switching for epirubicin but after our conversation she said that I apparently was not so sure about it so we had our discussion, we went through all Swedish national guidlines that state that an anthracycline + taxan + Herceptin give an increase in survival with 34% for Her2 positive tumors (I have to correct myself: the risk to die in this bc is 34% lower with this regimen). Taxan+Herceptin regimen results in more numerical recurrence than anthracycline + taxan + Herceptin regimen. But as she said I might be in the situation that nothing is needed in my case because the tumor has been removed but there is no way to know. When I asked her what she based her decision to switch me to epirubicin on she said that it was fully developed LVI, high Ki67 and the size being borderline.

We started discussing antracycline and the risk of develop leukemia and she was very upfront and said that during her time (ans she is an old lady) she has only seen two cases of leukemia caused most certainly caused by anthracycline but it happened for people to were in the trial of receiving gradually larger doses of anthracycline if their heart function was not affected. She said it was much higher amounts than I would receive if we decide to go with this option. During the conversation I mentioned that I was concerned because I was exposed during Chernobyl, living in that time in Kiev, 150 km from the explosion site, my parents sent me and my brother to our grand parents in two weeks but during first two weeks we ere actually there. So she wanted to discuss my case again with their primary oncologist who runs the department and like all this bc business in the whole Sweden. He is travelling all over the world participating in the conferences so he is not back until the next week and it looks like I will still receive my 10th Taxol with Herceptin next Monday until they decide what to recommend. I felt like I bought myself another week because I cannot make this agonizing decision.

I asked her whether she has seen any recurrences with weekly Taxol+Herceptin regimen given for smaller tumors without node involvement and she said no but it has not been in use for let us say 15 years so it was to early to tell. I like this lady very much, I know there is no guarantees with bc and she said she wish she could give me like 0,00001% chance but there is not but their intention is to make all of us free of bc and I felt I have a confidence in her.

As far as my upper back is concerned she said they looked at my x-ray from August and could not see anything strange there, neither did my blood work shows any concern, there are two values, calcium and one more that can be elevated, mine are normal. She said though that bone scan can give a better picture and that she can offer me one just to make me feel calmer. However, I am a chicken and I am chickened out saying that the exercises are finely doing their job and it is getting better, it does actually, my foam roller does wonders, knock on wood, and her suggestion was to do it after the treatment. And I just thought that if I am in an active treatment right now and the pain persisted so far wouldn't it be an assumption that it is not bc-related? My PT says that according to x-ray it looks like spondylos which can be painful and now I so want it to be it.

Cherry-sw

HapB, below is taken from Swedish national bc treatment program, I Google-translated it:

Chapter14 TARGETED ADJUVANT treatment for Her2

Summary

 Addition of trastuzumab to standard cytostatics treatment with

anthracycline and taxan provide a relative reduction in the risk of premature death

with 34% for patients with primary HER2 positive breast cancer (++++).

 The total treatment time with trastuzumab (T) is 1 year. T should begin

at the same time as taxan treatment, but T should not be given in parallel with

anthracycline (++++).

 Docetaxel + carboplatin in combination with trastuzumab is an option

for patients with increased risk of heart disease, but this combination

numerically results in multiple breast cancer recurrence compared to the corresponding

anthracycline combination (+++).

 Angiogenesis treatment with bevacizumab has not shown anyone

significant effect in addition to adjuvant cytostatics treatment at

triple-negative breast cancer (++++).

Recommendations for HER2 positive primary breast cancer

 Patients with determined HER2 positive (strongly immunohistochemical

overexpression, IHC 3+, or FISH / CISH / SISH positivity) from

Laboratory with participation in quality assurance work should be offered 1 year

adjuvant trastuzumab treatment (A). For some patients with the overall

very favorable forecast, such as ≤ 5 mm ER-mail and grade 1-2, it is

after weighing against the risk of side effects and sexual dysfunction reasonable to

refrain from trastuzumab.

 To provide adjuvant trastuzumab treatment, the patient should have

received adjuvant chemotherapy. Trastuzumab is given in the first place

at the same time as the taxan. If the patient is considered to be at increased risk of

heart disease, docetaxel + carboplatin can be combined with trastuzumab

(B).

 There is no evidence of adjunctive trastuzumab treatment

associated cytostatics treatment, ie only T together with

Endocrine treatment is not indicated (A).

 Regular clinical controls combined with ECG and examination

of cardiac function (LVEF) with cardiac cardiography or MUGA should

performed before treatment

Cherry-sw

HapB, I have corrected in my post, for adjuvant setting addingen antracycline + taxan + Herceptin lowers risk to die in bc with 34%, this is what Swedish national guidelines containing recomendations say.

moodyblues

Kattis  Thinking of you during this time, what day do you go back?  

Tresjoli2

so...years ago I signed up to be a bone marrow donor. Today, the Be the Match registry reached out to me via text and email and phone, to let me know I was a match for a 47 year old woman.

Only problem is, now that I have had chemo, I am no longer eligible to donate my bone marrow. I couldn't possibly feel any worse right now...this poor woman! Cancer just sucks!!!

Cherry-sw

Tresjolie, I am far from being an expert but I thought that people who had cancer can donate both blood and organs. Why isn’t it possible with marrow, does it remain damaged by chemo for the rest of your life? I mean we would have succumbed to some illnesses then. Was it what doctors said to you? I always thought that I might register myself as a donor in case of my sudden death but it was before diagnosis, now I am not sure I am eligible.

Cherry

deni1661

Cherry, I did not have chemo. I participated in a clinical trial taking Herceptin and Perjeta for one year. After 6 months the tumors were not visible on MRI; I then had a Unilateral mastectomy. They removed 2 nodes; pathology indicated only a few single cancer cells remained in the breast tissue. Almost pCR. I had a great response to the treatment and the other patients in the trial have had similar results. Time will tell whether I made the right choice skipping chemo. I significantly changed my lifestyle too so that may have helped - my MO believes a healthy immune system can shut down cancer and he felt my diet changes contributed to how well I responded to treatment. I hope that's true because I'm banking on diet, exercise and eliminating stress to keep cancer away.

Cherry-sw

Hi deni1661, thank you for answering, H and P combination seems to be really effective, I am sure you have received great treatment.

rljes

lwbt- Hi - I had a dbl masectomy in Aug - my left side cancer, and I knew right away I wanted both breast gone.  I wanted to go flat. My BS wasn't to thrilled with the idea of taking a perfectly good breast - but I insisted. It had nothing to do about worrying of cancer spreading to the right, it was more of a look I wanted.  My breasts were large and droopy.  I didn't want to look in the mirror and see one droopy, to the navel breast and have to deal with figuring out how to make the missing left breast look like a breast with out a prosthesis. Besides I had severe upper back and neck pain due to overlarge breasts plus neuropathy from Shingles which made wearing a bra painful.  I have no regrets with my decision. 

However, this is just my story, and as Poseygirl expressed - its up to your lifestyle and where you are at in your life.  Best of Luck! 

BJI

So just got a call from MO nurse, my dexa came back as early osteopenia and they want me to start fosamax now. Have only been on arimidex for a month, so they are saying it could get worse. Just when you think things are starting to go smoothly, something else comes up! Got through sx, radiation, taxol with minimal issues. Herceptin has been going ok, started arimidex......Heard someone say Cancer - the disease that keeps on giving! I am starting to believe it, realize these are just bumps in the road, but things were going along pretty smoothly. Another set of SE to deal with! Meet with MO next week to make decision. Hubby having cataract surgery next week, so my turn to be the caregiver. Heading out of town for a wedding this weekend, forget about this stuff for a few days.

ElaineTherese

BJI,

After 2.5 years of Aromasin, my dexascan showed that I have osteoporosis. I started Fosamax this August. The best thing about it is that it's only once a week! Yep, cancer is the gift that keeps on giving.

BJI

HapB - have had some hot flashes, minor ones, not sleeping too well at night. Have some knee and joint pains, stiff joints, but not sure if from herceptin or arimidex. They are always a little worse the week after my herceptin, better the 2nd week, and much better the 3rd week, and then start all over. I have been on it for a month, so far I'd say manageable. I discovered that the calcium 1200mg/ vit d3 1000mg that I have been taking since late August, I was supposed to take twice a day to get that dose. So I have been taking only 1, so getting half what I thought! I might have to take a look at the previous dexa reports and see what numbers were 2 yrs ago. They were done at a different facility.

ElaineTherese - Is Fosamax what they recommended? Doing some research on Prolia, wonder if better to get injection twice a year or weekly pill?

KimCee

BJI

About Prolia... I have had two shots so far. I have had no side effects. My first dexa showed osteopenia. I did not want to take a pill. So, I did 5000 units D3 and 1200 mg calcium daily. I also eat Greek yogurt daily. Two years later dexa showed osteoporosis. Ugh... I chose prolia. My biggest concern is my teeth. Worried about issues due to these bone building drugs. So far, so good, knock wood

deni1661

Hapb, no offiresults from my clinical trial yet. The only info I have is from my MO. I asked him for updates whenever I had a treatment. I became friends with another patient in study and she is making steady progress with her tumor about 75% eradicated so far (she is a little over half done).

deni1661

BJI, sorry to hear about your recent osteopenia. Cancer is definitely not a "one and done" disease - it sucks! I certainly appreciate when I have a good day and all that means is the pain isn't so bad, my hair looks half way decent and I have just enough energy to get through my work day. Unfortunately today is not one of those days - my face is covered with tiny zits.....not a major big deal but I'm already self conscious of my hair, lopsided boobs, and the way I walk because of pain. Sorry went off on a rant there

You have a good attitude and that helps. Have fun this weekend

deni1661

KimCee what are your concerns about your teeth? The reason I ask is because my dentist said she was worried about a wisdom tooth I have that most likely will need to be pulled. She wanted to talk to my MO before doing any major work on my teeth.

Suburbs

Deni1661, I am not laughing at you but with you. Your definition of a good day lines up pretty well with mine. It's a world apart from before BC.

On the subject of meds that protect your bones, if you have a condition where you have excessive bone growth in your mouth, a bisphosphonate can exacerbate the condition. There is another dental side effect of bisphosphonates whereby bones in the mouth can be weakened and result in osteonecrosis. I can't post the link properly but a search for bisphosphonates and dental side effects should provide enough information to make you crawl under the covers if you are having a bad day.

Personally, I am so sick of side effects. I felt great until I was cured and now I feel like a wet dish rag most of the time. A day at the office wears me out completely. I have to nap when I get home. The constant appointments, the infusions, the prescriptions, the post-surgery scar tissue and infections. What next! Every time I think I see the light at the end of the tunnel, I have a set back. That is my rant for the day. Thank you very much for listening

KimCee

Hi Deni

Suburbs explained the dental issues a few posts up. I do not have any dental problems and hope not to have any. I invested in Invisalign and am still in treatment for that - ugh. So I don't want my new straight teeth to have issues due to my bones and Prolia.

HapB, I told my oncologist what I was doing regarding the vitamin D and calcium He gave me two more years to try that before telling me I need to reconsider the Prolia because I certainly would not want to suffer a compression fracture or broken bone. I heard that and bit the bullet after two years of taking the Vitamin D and Calcium, which did not help at all. My last dexa after 8 months of Prolia put me back at Osteopenia. In two years I hope to be back to normal. Hmmmm, well normal for a BC survivor...

What we take to stop our cancer gives us a slew of other issues. Been dealing with it all since I'm 36 - quite annoying

toughcookie_21

Kimcee, I am on the maintenance phase of Invisalign having finished up my last progressive tray just a few weeks before my bc dx. Now I'm wearing the tray that is supposed to permanently stabilze my teeth in their new spots. I think I've seen some minor shifting since starting chemo and really need to get in to see the orthodontist to see how we can prevent regression as I like my new smile a lot.

SpecialK

I started Prolia in Feb 2012. I was diagnosed with osteopenia years before my breast cancer diagnosis due to an early hysterectomy. I could not take oral drugs due to an earlier surgery for reflux. I remained stable without meds until chemo and six months of letrozole. After my fourth Prolia my Dexa showed recovery to normal density. I have had no issues with Prolia so I started Invisalign several months ago, and I am half way through. My dentist's wife is a stage III ovarian cancer survivor, and he stays up on treatment induced dental issues. My only Invisalign related problem so far is slower movement of my teeth so instead of changing trays every two weeks, we are doing three. My dentist says this is pretty consistent with post-menopausal women on Prolia doing Invisalign because of the stregthened bone. So far, so good.

Hap - Herceptin alone doesn't usually cause hair loss, but it can slow hair growth and recovery. I did not experience this, but I know others have. My hair started coming back pretty slowly and I wore my wig for 5 months after my last chem, but once it started it grew at the normal rate - at least 1/2" a month.

deni1661

Hapb I'm not sure if my hair loss/breakage is Herceptin but it was pretty significant when I was on Arimidix. My hair got thicker since I'm on Letrazole but now it is so dry it looks like a birds nest on my head!

KimCee so sorry you have been dealing with this at such a young age. You have a positive attitude despite all you have been through.

Thanks Suburbs, KimCee and specialk for the info on dental issues. Geez it's always something!

I really hate to whine about all these side effects but it's comforting to know I'm not alone in this battle. I pray that with time things get better for all of us!

KimCee

Wow, you learn something new everyday. Over the past 18 years I could never figure out why my hair got worse and worse. I thought I was the only one whose hair was thinner after chemo. I recently thought it was the taxotere - but, the hysterectomy and AIs could have definitely been the problem. It has been fine and thin, but the past two years, it has been like the birds nest look. Frizzy no matter what I do.

I may be a nurse, but I do not know everything - my biggest wonder right now is how the heck did this new breast cancer turn out 100% estrogen positive - after all I did to get rid of the estrogen?

And yes, I hope somehow, someway, someone can come up with a treatment that works without all the other issues. xoxo my Breast Buddies

Cherry-sw

I have a question: anyone who did genetic testing? I have discussed it with my oncologist, it seems that I do not have enough reasons to do the testing but I want her to push it for it anyway and she said she will give it a try but also told me that Her2 positive bc is rarely genetic. I wanted to test myself because I have to daughters and one of them is in her twenties so she is concerned and wants to test herself but first I must be tested. I recall that I heard either somebody mentioning that or reading it somewhere but I am sure.

About the feeling of it is never ending ordeal, I feel the same. Tomorrow will be four months since the doctor during the US told me looking at the screen, I am sorry but it does look a malign tumor and my life has changed. The BS I met right afterwards just said this is a tiny bc, so far we have plans for surgery and radiation. Look at where I am four months after, unrecognizable, frightened to the point I could not handle the anxiety without meds, scared of everything, not knowing how cope with the reality, considering more chemo. I am constantly on the brink of start ranting looking at people and thinking they all are fine and I am living under constant stress scared about my life. Also accidentally found out some bad news today about a blog I red this summer and wanted to tell it here and decided not to but I am so tired of living like this, sometimes it is just too much.