TRIPLE POSITIVE GROUP
Comments
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BJI,
I never rang the bell, after chemo or the last Herceptin. Some Stage IV patients aren't fond of the bell; it reminds them that they will never be finished with treatment.
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I have noticed our healthcare system, much like in Canada, also being annoyed at a lot of questions...I just continue to ask. You can also use the 1177.com and log on and mail questions, ask for your journal etc (sorry this info is a bit specific for our region) and you can change your doctor within the same clinic without giving a "why". I have. I have also not followed their recommendations for direct reconstruction which I am still happy I did not etc. Stand your ground Cherry, I know it is hard but it is your right. Same time we are getting very good care and the latest in medicin including perjeta for those who need it but of course have our national guidelines so interesting to compare different treatments for different countries. If one is better than the other is a different questions.
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that's an interesting question, Hapb.
I'm pretty happy with the set up here in Canada and feel fairly confident that we are receiving high standard of care. However, I do know that we are behind the States in terms of certain treatments being approved. Because we have that coverage, approving a drug becomes a huge financial burden for the taxpayers. So anything approved will have to show fairly substantial gains. That's why I believe it will be a frosty day in hell before I could get Nerlynx here (but maybe I will be wrong!). Canadians also feel that the wait times for things are too long.
I believe in universal healthcare. It is upsetting to think that people are not getting medical attention because they can't afford it.
I'm not very insightful on this topic, I know
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I am beyond happy with the system here in Scandinavia, even though it has some flaws, private insurance is not something we need to think about. Everyone is insured regardless or work situations etc and receive the care they need. We have had some political problems in the past years creating some waiting lists for operations, underpaid nurses etc but there is ways to still work around that. Some people state "you have to be well to be sick" and somewhere that might be some truth in that, saying all this we all receive state of the art medical service and the latest approved medications. Disability as well during time away from work. Taxes might seem high living over here but I think we get a lot for it and I am one that prefers paying taxes to equal out the system some. We still have rich and poor areas but that should not, in my opinion, be noticeable in healthcare, school systems, elderly care etc. As a society we need to take care of each other regardless from financial background, those that make more can pay more, period, well that is my opinion. I was lucky to have excellent health insurance and disability insurance while living in the US and that cost me a lot too meanwhile some people around me did not. I would have received the best care in the US but That is simply not fair when some do not. A lot of politicians here want to make the system similar to the US and that boggles my mind. I am both an American citizen and Swedish so know both systems quite well. The US has been struggling changing the healthcare system for such a long time so I am always wondering why some think we should go the private route even over here, knowing it does not work for everybody. I am sick and tired of us humans just watching out for ourselves, just wanting more and more, instead of being satisfied we all collectively have our basic needs taken care off. Well that was my political speech....:) and I am not a politician...:) In some countries there is for instance no herceptin available at all and people just...well pass away...so I think about that and how well we live in our rich countries most likely on the costs of others. I hate it.
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KB870.
You can get Arimidex directly from the manufacturer for a USD $1.00 a day. I don't know if that is what you will take but wanted to share this info in case it is.
Vicky
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Hi, I will second every word of Kattis', Scandinavian model of health care is a true implementation of socialistic approach, the real deal when it comes to the core values of socialism. It should notbe compared or mixed with those of countries that like Soviet claimed they built socialistic societets, they did not, they were in the best scenario totalitarian, and then we always have some African or Asian atrocious examples. The most important is the mentality here, it is seeing everybody as equials and desire to help those less fortunate. A socium that realizes that it will be so better off if each and one is taken care of even when they do not have means.
Frankly speaking I do not understand how it is possible that some people in US, a lot of them, do not have health insurance, what happens to them when they get sick? What happens to their children? Dental care is expensive in Sweden, and it is not subsidized in the same way as a conventional health care but still it is and for the children it is free, until the age of 18. For the health care we pay 150 EUR for a year from the date of first visit. So I was diagnosed in the end of June, paid until the total amount up to 150 EUR (even less) and will not pay anything until the end of June next year. Valid for everybody, if you do not speak the language, an interpreter will be provided free of charge. Prescription filled medications are not included but for those there is its own discount system, I do not remember the exact maximum amount but when you reach it you get everything for free for the rest of the year. We also have progressive tax system. Last government lost to the current one because they wanted to make some cuts on health care and general unemployment and sick insurance. When media started to publish interviews with cancer patients who complained about their sick insurance being cut and they were forcera to go back to work, I told my husband that they will not be elected for yet another period.
Of course, there are some flaws, stressed hospital personnel, longer waiting times, a standard of care that is not questionable, feeling that we are getting less. Like blood tests for tumor markers for example, they do not do it here, but when I red the national guidelines where was an explanation that those were unreliable. It could always be better but it is so much better than in Russia where they claim that they have free health care but it is never free, even if you want free stuff the hospital has a reservation for the shortage of supplies and it is a rule to show your 'gratitude' to all members of medical team after the treatment, the amounts are 'agreed upon' in advance. The reason behind it the low governmental wages as they claim but the system is corrupted that I believe if Russian doctors would start get paid as their Swedish colleagues the direct contributions from the patients will not stop. This is why the profession is still very desirable and the doctors are so better off financially whilepaying symbolic taxes. I am so glad I am out of there and live where I live
I would probably say that health insurance and weapon legislation are two reasons why I wouldn't move to US if I were considering to move elsewhere. But I always thought that I might end up in Canada or NZ. Not like anyone wants me there either, just making an example
Cherry
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HapB, 80% of Swedish doctors are employed by various states, called Landsting, probably could be compared to your states but with the same legislation I think. Here is the link: https://en.m.wikipedia.org/wiki/County_councils_of_Sweden
20% belong to research and private practices. It is always desirable though to have experience from larger hospitals that belong to Landstng that are run by elected authorities of respective counties, so they are not run by the government that represents the majority of the parlament but theycomply to the legislation the parlament stipulates.
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Cherry,
I bet you make a great neighbor in the USA.
Vicky
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coachvicky, I apologize if I sounded offensive, but gun laws, health insurance and fast food are the only disadvantages I can name, otherwise love the country, history, literature, once again the variety of cuisine or different cuisines. I was the only one back in university who red The Last Mohican including the teacher who was a native American and thought that Uncan and Cora died like they did in the movie, but it was the opposite I told her, in the book, they lived. I did not tell her in front of the class but when she wanted discuss our presentation and looked at me and said but they died and I said no, he chose then to mention it infront of the class. To her defence, we were actually discussing another book by the Canadian author called Green Grass Running Water but it was all about intertextuality because the story refered to both Moby Dick and Falcon Eye. Yepp, I am a book worm, red all Jack London, all Theodore Draiser, all Phenimore Cooper.
Coachvicky, if I were your neghbor I would had never had a gun in my home but meatballs for sure and I know how to make a lox
Cherry
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Crap, I just got a call back from hospital...another check...I guess I should be happy they are checking but why every 3 months? I thought I would be fine for longer...still having a bit of a lingering headache but giving work the blame for that...I hope they find absolutely nothing and do not want to investigate anything further...I can not shake the worry in any form or way...I need to have more medication against anxiety that is for sure...I hate, really hate this. Leave me alone cancer please. I can´t take it!
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I just wanted to pop on and thank everyone on their info and input regarding surveillance and tumor markers. I haven't decided what I am going to do at this point. I won't finish Herceptin until February so I have some time. One of my BC friends sees another MO here in town and I will see what he does for surveillance.
DizzyGirl
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Kattis, I understand you completely, I want the aftercare to be better but in terms of optionslike better and more secure diagnostics but on the other hand who wants them to find anything?
You can ask for conselling at your rehab, they can also involve a psychiatrist, the have several mild drugs to offer, they can also rum some tests. I got my anti-depressive when I hit the bottom, I am tired and gaining weight but I am not feeling this enormous anxiety anymore. Kramar,
Cherry
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HapB, missed your question about the tuition fee. The efucation is Sweden is tuition-free for the residents, you even receive a scolarship, not much money, around 300 EUR I belive and you can take a loan from the government, a special institution, during your studies that will pay for the living like rent, food and other expenses, this is optional but a lot of students take it because the interest is very low and you have to pay back very little if you do not work.
Cherry
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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!0 -
deni1661, I see you do not have any chemo stated, didn’t you do any? Was it a clinical try
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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
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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?
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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
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Cherry ... sent you a PM! Loved your post about the meatballs.
Vicky
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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.
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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
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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.
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Kattis Thinking of you during this time, what day do you go back?
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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!!!
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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
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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.0
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Hi deni1661, thank you for answering, H and P combination seems to be really effective, I am sure you have received great treatment.
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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!
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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.
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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.
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