TRIPLE POSITIVE GROUP
Comments
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The real one - the generic is not available here. I'm waiting to get my latest bone density result when I see the onc next week. I've only ever had one, so it will be interesting to see what's going on after 2 years on an AI.
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kayb,
A trial of trastuzumab used without chemo I don't think would be skewed although I understand why it raises that question. I don't think those who would elect to participate are that limited. What we are doing now is forcing women with HER2 positive disease to either have a life-style and pay-ability through whatever sources that they can handle the trauma of chemotherapy and a year of trastuzumab.
I can think of plenty of people whose life-style will not permit that much time for medical purposes, whether it is the single mom with kids and 2 jobs, or the person who is dealing with other health issues in addition to breast cancer. Those people might be willing and able to choose the obligations of trastuzumab, but not the obligations of all the constant medical visits and debility of having chemo prior to or even with trastuzumab.
Those who post here are not completely representative of the HER2 positive population at large.
A.A.
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Jenn, the advantage of tumor markers over imaging is the large amount of radiation involved in imaging, especially as the years pass. It doesn't seem like much in the first year or so, but it DOES add up, and then what do you do? You don't have any marker history to switch over to by then, to go by.
I had my fill of rads exposure as a stage I patient with no evidence of disease by year 4, and I'm now on year 10.
A.A.
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We are not given any follow up scans over here unless we are symptomatic.
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For those who have osteopenia - what are your t-scores, and how much, if any, calcium are you taking?
I just had my DEXA - slightly osteopenic but according to my gyn not bad. Score is - 1.4
She said they do not treat at that level or recommend extra calcium. She said the 500 mg of calcium I get in my multivitamin is sufficient. However, I looked and it is calcium carbonate. Since I'm on Nexium, I need to find a multi without calcium and then take calcium citrate additionally.
My MO was surprised at my DEXA result for my age and activity level/fitness history (lots of WB exercise). He too mentioned the risks of too much calcium (heart, etc.) and is comfortable with me staying just at 500 mg of supplemental Ca.
I guess since I'll be starting Tamoxifen and that has some bone building benefits that should be taken into account, too.
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Same here Susieq. I do get follow up scans on my liver because they did see something. They are assuming they are cysts but still watching. I'm not sure how much longer my onc will scan. I had the usual scans before surgery. Liver scan after chemo. Another liver scan a year later. Now my onc wants me to follow up 6 months after the last scan since its so far from chemo.0
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I swear, I dont think I ever catch up on this thread...so active!! This falls back to the EF conversation. I apologize for being constantly late to the party.
I was monitored closely, and treatment never stopped. But EF dropped and remains in the low 50's. I am 45, and a life- long athlete. I have always been trim and healthy. I was hiking recently, with a rather avid group, and I was the first and youngest that needed a breather! This past weekend, I was defending my regional tennis championship. The temps were near 100, humidity was in the 80th percentile. I was seeing stars. I nearly hyperventilated. My heart now often feels like its pounding out of my chest. Its not the age. Its the chemo and radiation damage. Period. All kinds of mugas, ct scans and heart docs later concur....I have heart and lung damage. I am vegan, ( unless milk chocolate is involved). I drink green juice 2x daily... wheatgrass, kale, cauliflower, broccoli, sprouts etc.0 -
I had asked my MO if I should get Zometa to strengthen bones. She said its not necessary (for me) and there's no proof it prevents recurrence. But then I read about many on here who do get it. I've never had a bone density test and am 41. My MO sticks to standards and I always feel like im missing out on somethin because of this. Should I be pushing for Zometa?
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My onc is a big advocate of the CTC and I've had 2 thus far. She does them on a regular basis...I can only assume it is a good baseline.
I am going to follow-up on the Boniva for the osteopenia....have had it for years and have been a runner since my teens....guess if I wasn't active, I could be way beyond the osteopenia stage. I'd love to take extra calcium versus the Boniva.
Arlene
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Shore1 My onc was initially going to put me on Zometa using my osteopenia as the reason. At that time the studies showed Zometa prevented bone mets… few months later at the San Antonio Conference in 2010 a study came out showing that wasn't true. My onc actually called me to tell me about the change in plans… no Zometa. Then another study came out I think in 2011 indicated again that Zometa might prevent mets. I asked again and my NP said the results were still inconclusive and my onc is not prescribing Zometa for bone met prevention.
Are you on Tamoxifen. Tamoxifen doesn't do the damage that the ESDs (AI) do to the bones. It might even strengthen them. In my case I'm on ESD (Estrogen sucking drug: Anastrozole). I do get a bone scan. So far I've had very little loss. My next one is the end of August. I have 10 years on you.
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Lago, yes, I started tamoxifen in february when I finished chemo. I will keep asking about the zometa at every MO appt in case anything changes, which seems to be all the time with BC.
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geewhiz, I know what you are going through. I'm not as young as you, but now suffer being breathless just walking up a incline driveway or going downstairs. I'm glad I could do at least a few Herceptin treatments, but there are times I'm mad that I did it. It changed my life. I didn't just do treatment and it was over, and returned to normal life. Herceptin alone changed my life. I have a hard time doing house chores, and my gardens have fallen by the wayside. The weeds have grown up around my rose garden. It's a chore to just walk around my yard. Pathetic. The idea now of being on heart meds possibly for the rest of my life is scary. The idea of heart failure is scary. At this point I don't know if I will recover or not. Just hope so.
I have a echo Monday morning. It will be six weeks since my last echo (about a month since my last herceptin). You would think by now that I would feel better. The first time I was off for 6 weeks, I did feel an improvement before resuming the treatment. The last Herceptin hit, only 128 mg, is what pushed me over the top. I feel liked I've been punched in the chest...very hard. I'm now a heart patient.
When I watched the movie "The Living Proof" the doctor doing the first study used chemo and herceptin together. I understand they were stage IV, and some of their cancers progressed to the point that it made it difficult for a targeted therapy like herceptin to effectly rid them of cancer and for that reason some of the women didn't make it.
It doesn't bother me that women here chose herceptin/chemo. I'm glad it worked for them. It does hurt, when people can't respect the decision to choose herceptin a lone. After research, and much wrestling, I'm glad I went with my gut to do herceptin alone. My oncologist admitted chemo does do a number on the heart, and usually women don't have problems with a low EF untless they do herceptin/chemo together. One of the several reasons, I chose not not do both was my concern for the heart.
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EveBarry: Keep the faith. My last (and 10th) Herceptin was end of November and I had a MUGA a few weeks ago and it is going back up....I'm at 65 now and started at 73.6. It took me a long time to return to what they call at 65 above normal.
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BTW, I had 2 Herceptins with Chemo and 8 just Herceptin alone....
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Arlene, how far did your EF drop? Did you have strong palpitations where your whole chest quivered, and heart trobbed? Were you breathless? Dif you have the feeling of a heavy chest...burning at times? Did you feel faint, and dizzy when standing? After your Herceptin treatments did you continue to have echos?
It is encouraging that your EF is up. Before Herceptin my EF was 65. I will be happy at 60.
BTW...my cardio said STOP Herceptin.
I am fortunate since beginning Herceptin to have echos every 6 wks and was stopped before it became dangerously low or heart failure.
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Thanks evebarry. I sincerely appreciate the support. And I post my experience, just so that others who read here, might find commonality. Maybe it makes them say, " Hey, me too! " And they know they will be ok.
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Arlene...thats great about the ejection fraction! Perhaps, I drew the short straw. My EF was higher than yours initially, but never recovered to those initial levels.... and I am further out than you. I suppose the lesson here is to make the best we can with what we have been given.
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My onc lied to our government to get me the Zometa - he obviously wanted me to have it for prevention of mets rather than help with bone loss as my original bone density was ok. He also said that if you start out on AI's with a low density, you are more likely to get osteoporosis than if your density was OK to start with - hence my impatience to find out how my test went.
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My eyes have been a mess since Taxol. They are still watery and I can tell the prescription is changed. However even before chemo it had been changing. I have been nearsighted all my life but in my 50's needed reading glasses. in my late 60's the reading area had improved and before I started all this BC nonsense I had planned to eliminate my reading factor from my graduated lenses the next time I need to change glasses. Now I'm waiting until all this stuff is out of my system before I bother getting new glasses. I just take off my glasses when I read. I'm not sure about far vision. Sometimes it seems worse but that is usually when my eyes are particularly watery so I assume it is the tears. I plan to go to an eye doctor when I'm finished with radiation just to check and make sure there is nothing like cataracts etc. going on.
Peggy
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Kay - so do I - I'm religiously taking Caltrate plus and D3
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While I think the debates are interesting, I hope this thread doesn't turn into another of the rant and rave ones. I get frustrated by those and usually leave them. At the end of the day, there is no perfect answer. As intelligent women, we inform ourselves and choose. While I wouldn't choose the protocol that Nancydawg is choosing, it is her choice, and if it doesn't work out, she knows her risks and options.
On the big baby front, I guess I am so doomed. Lol. First I am tall. Also had a ten pounder and an 8.5 one. I drink wine, sometimes more than twice a week. I eat red meat probably more than I should.
Since I am the one always griping about my once not doing scans (although I wore him down and have a pet scan scheduled for 8/14), I am hoping he doesn't read Oncology Times. I was leafing through it looking for pertinent stuff and found an article advising docs to change their thinking on ctc's and scans in early stagers. Copy follows.
Kind of fits some of the previous discussions.
ASCO's Top Five Tests/Procedures to ‘Think Carefully About Before Undertaking’
As a leader in the “Choosing Wisely” campaign, ASCO identified five tests and procedures that, in the society's words, are “expensive, widely employed, and not supported by clinical evidence.” ASCO encourages oncologists and patients to think carefully before undertaking any of the following:
1. For patients with advanced solid-tumor cancers who are unlikely to benefit, avoid unnecessary anticancer therapy and focus on symptom relief and palliative care instead.ASCO recommends eliminating treatment that is unlikely to be effective in patients who meet all of the following criteria: low performance status (3 or 4); no benefit from prior standard therapy; no further standard treatment options for their disease; not eligible for a clinical trial.
2. Do not use PET, CT, and radionuclide bone scans in the staging of early breast cancer that is at low risk of spreading.
3. Do not use PET, CT, and radionuclide bone scans in the staging of early prostate cancer at low risk of spreading.
4. For individuals who have completed curative breast cancer treatment and have no symptoms of cancer recurrence, avoid using routine blood tests for biomarkers such as CEA, CA 15–3, CA 27–29, and PET, CT and radionuclide bone scans to screen for cancer recurrences.
5. Avoid administering white-cell stimulating factors to patients undergoing chemotherapy who have less than a 20 percent risk for febrile neutropenia.0 -
Fluff - sounds like my onc follows that list.
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Jenn, thanks for the links. I had already been to those and, I may be missing it, but I don't see a concrete number for what is high and what is normal for the 15-3 and 27-29. My PA says 40 is high for 15-3 and 36.1 is normal for 27-29. I just can't find that information in any of the research or on those links you posted. I am not making a big decision based on those tests. They are just another measure, however unreliable, of the extent of my cancer. These tests were not covered by my insurance, so I paid the 200 dollars to get them because my doctor thought it was important to have something other than the scans as an indicator of metastisis. Thanks again for taking the time to look all of that up.
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Quick change of subject. Is anyone using the MG/GM cream instead of Arimidex?
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Fluff, how do we know when we have less than 20% risk? Is there a definite cut off in the counts?
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Eve and Gee,
I am right there with you when it comes to feeling the effects of Herceptin. I think it is especially difficult on active/athletic women because even at 49% EF, I can usually outperform those who have never had BC. But I notice the difference in performance, and find it VERY frustrating.
This isn't my first time to the rodeo (always wanted to say that!). It is my first dance with cancer though. But cancer isn't the hardest thing that's ever happened in my life. Maybe because of this, I figure if all I get out of this battle is a chest scar and heart problems, then I'm still ahead of the game...I'm still alive to fight another day
At least most days.
Some days I mope.
And now for the reason I responded....lol. I met a woman 3 years out with heart damage from Herceptin. She had NO IMPROVEMENT for 18 months (her last MUGA). Her Onc stopped ordering her MUGAs, told her to take a break and come back in a year. She did and GUESS WHAT? It's NORMAL!!
I know from the literature this is very rare. Most women, if they're going to bounce back do it the first year, but STILL...WOO HOO!!
You know what she told me? "Now I can't blame this extra ten pounds on my heart!" lol
The more things change.......the more they...well you know
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Fluff,
I don't think this will become an angry thread. The non-traditional triple +s need our support too. We don't all have to agree (how boring!). I think as long as we disagree on topic, (ie tx, etc) and don't allow personal insults it will be for everyone's benefit.
I appreciate the different perspectives.
Nance. I know nothing about tumor markers. Hope you get the answers you're looking for soon! Have fun on the vacation!!
Lago....did you miss my question? lol How long did you wear this HORRIBLE band after exchange?
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"No one should have to base their choice of treatment on the quality of their insurance coverage" or what they can afford. Many people work through chemo too. Kayb I'm with you on this. You don't want to do treatment that's your choice but I don't feel that us non medical professionals really have enough knowledge and experience to be making all these decisions on our own. You need to find the right onc for you.
We can't experiment on ourselves though. Seriously think about it. I mean using a condom only 1/2 the time isn't going to be as effective as wearing it all the time. It seems the same holds true for chemo/herceptin combo right. You can't fault the medical community for wanted to give you what they truly believe is the best treatment to date.
I don't have any issue with people not choosing chemo. That's their choice. I do have issue when people insinuate that you will get permanent damage to your heart etc. Yes it does happen but not to everyone. Given the choice between congestive heart disease and taking pills the rest of my life or not taking Herceptin/chemo and getting cancer back with a much shorter life I took the former. Granted I didn't have heart issue… at least I don't seem to have any.
Susie58 as mentioned I was osteopenic (and the damn poster gal for getting osteoporosis with my family history, frame size, etc.) before chemo. 6+ months PFC, 5 months after starting Anastrozole and chemopause I only lost .1% density (note decimal point). Granted I do exercise and take both D and Calcium supplements. You might lose a little but don't assume the worst.
Kitchenella I went to see my ophthalmologist soon after chemo ended (kept getting these blood bursts in my eye from chemo). At the time they tested my eyes and said I needed distance glasses. I told them I wanted to wait a full 2 months PFC. Sure enough I didn't need them and my astigmatism that I had as long as I can remember improved. The watering should stop although my eyes are now dryer. At times I do need artificial tears.
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Yes TonLee I did miss your question. I don't remember but it seemed to be several weeks.0 -
Ugh. I'd whine (ok, more) but I'm so thankful the rock is gone! lol
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TonLee - that is an awesome story about the woman who recovered EF after 3 years. Hope for those who have sustained damage!
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