TRIPLE POSITIVE GROUP
Comments
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deni,
i am not yet on arimidex. had herceptin only infusion june 23, on my second month of lupron shot and finished chemo june 2. now i have bone pains all over especially joints. all over. like i am 100 years old.if i stand up from a sitting position, it takes me a while. its hard to climb the stairs. this started about more or less after my herceptin only infusion. but i have been getting hercptin with the TChP regimen though. its either the cumulative effects of chemo,herceptin alone or lupron. will discuss this with my MO. its hard to go through surgery with this pain. and i se my MO 2 weeks after surgery.
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Denise - often the anticipation is worse than the event, it was for me. Once my hair was gone I figured I was on the way to it growing back.
kae - I would be almost as inclined to think your joint pain is coming from the estrogen suppression
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SpecialK, i think so too. now i am thinking of getting my ovaries out instead of lupron. i am 45 years old.i cannot live like this. how can i go back to work if i am like this? i am a nurse on a very busy cardiac floor.is there something else beaide the lupron? im almost tempted not to inject myself with lupron when it is due which is july 17, 3 days after my bmx! my husband said just refuse it but i know it will help prevent recurrence. and im not even on arimidex yet!
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kae,
I'm on Zoladex, which is another ovulation suppressor. I don't know if it will affect you in the same way as Lupron, but for me, it hasn't caused any pain. Zoladex is monthly whereas Lupron is every three months. So, it's not terribly convenient.
I have considered having my ovaries removed, too. My old OB/GYN didn't like removing healthy ovaries because women who keep them tend to live longer. However, he has retired, and I haven't had the chance to talk to my new OB/GYN about it. She's on a leave of absence because her husband recently died (of cancer of course), and she has three young children.
Hope your BMX goes well!
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I'm Herceptin too and will be until next year.. so the whole tail bone pain is concerning me..
So I did some looking around...
Herceptin sx is joint pain right? The tail bone moves not as much as a joint..but it still have joint like qualities I think they call it amphiarthrodial joint ...maybe that's why it hurts?
Just a thought...0 -
HapB , I thought one of your problems was your tail bone hurting
Since one of the sx is joint pain.. maybe since MD lump the tail bone in being a joint .. that might be why your having tail bone pain ..
I'm not sure why any joint pain is a sx .... but I do know come Friday they are are NOT going run my Herceptin at 30 min. ... its going to be a slow go... or you will see fireworks coming from Nashville! lol0 -
yeah.. I've been trying to find that too... grrr..
will post if I find anything !0 -
elaine, i will talk to my onco about zoladex. maybe it will be better for me. its ok even if it is monthly. thank you
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Kae99 - your symptoms are just like mine were on Arimidix. I don't have any pain other than my tailbone on Letrazole. I have trouble getting up after sitting but once I start walking it loosens up a bit. I'm sorry you're having so much pain going into your surgery; maybe your MO can give you something? Pain is a stressor and you want to be as relaxed and stress free leading up to your surgery!
I hope you find relief soon, take care
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thanks Deni, i am just taking Tylenol for now.. i know my PS/BS will give me narcotics after the surgery.
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For those of your suffering on Arimidex ...The first generic manufacturer I tried was horrid. I had so many hot flashes I cranked the AC up and held my head over the vents multiple times a day. A triple electric bill later, I called my pharmacy and switched to the TEVA brand. I may be able to tolerate this but I am continuing to swell about 3 pounds overnight. It is the "fillers" in the generic brands that seem to cause the side effects.
I learned this from another forum on this site which I will post at the bottom. Posting at the bottom avoids funky text!
Depending on how this TEVA brand goes, my next alternative is Arimidex Direct. It is a dollar a day should my insurance not allow an override. Here is the site: https://www.arimidex.com/arimidex-direct-enrollmen... (You may need to paste the link into your browser.)
Vicky
Here is the forum:
Topic: For Arimidex (Anastrozole) users, new, past, and ongoing
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HapB - How strongly ER+ are you. It's something to consider. I was 90% and I would feel so much more secure had I been able to do Herceptin.
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Hap - I guess I just feel more is better. No worries.
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HapB - only 7 or 8 infusions of Herceptin before heart failure set in. I am taking Tamoxifen and plan to stick with it. Since I never finished targeted therapy for HER 2, I'm just nervous about the strongly positive ER. Didn't mean to be vague...
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Hapb do you have the link with the 50 percent on BC.org about heart failure?
All I've found on this site says 5 to 30 percent.
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Fifty-one subjects in that study -- pretty small-N by statistical standards. But, yes, there are women like Blownaway on these boards who have had to stop Herceptin because of heart damage.
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Thank you! I had echo. done before I started chemo and will have one every 3 months.
The article was done in 2011 .. l wonder if there's been any updates on the Hercpetin formula since then?
It happens for sure ...it may happen to me who knows? I fall right in the middle if those that were tested. I'm 55,been on HBP meds since my 30's. And pre diabetic..but Ifeel like I'm being monitored pretty closely . Just have to take one problem at a time.
It's there another medicine like Hercpetin? Seem like my MO talked about a medicine that worked liked Hercpetin,but instead of the medicine sitting on the outside of the cells to block the HERs2 it actually goes inside the cell after the HERs2.
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In most cases the cardiac effect is a reduced LVEF - left ventricular ejection fraction, which recovers when Herceptin is done. I had an initial echo, and repeat echoes done at 3, 6, 9, and 12 months. Yes, my LVEF dropped - but not 10% or 10 points or below 50% - which is the benchmark for stopping Herceptin. My LVEF returned to normal after Herceptin was done. This is a known side effect of Herceptin, and is different from permanent damage done, or congestive heart failure. Not to say that more permanent issues, or CHF never happens, but it is not the norm. This was a small study done 6 years ago, and included patients with cardiac issues in place prior to diagnosis.
denise - they can't change the formulation of a drug without putting it through trials again, not likely to happen considering the great success of Herceptin. Prior to its use for early stage BC many more Her2+ women did not survive. If you are curious about how Herceptin came to the market watch the movie "Living Proof" about Dr. Dennis Slamon at UCLA.
hap - the noted side effects are listed from the data collected in the FDA trial process. Your MO can report an adverse event but occasional pain is considered an acceptable, and usually short term, side effect. Also, because most people are ingesting and infusing many drugs during chemo it is impossible to determine what is causing which thing.
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Hapb if this was a different kind of bc I might be inclined to agree with you but it's not.
I would contact your MO and ask why the heart issue wasn't discussed with you. My MO talked to me about it at my first appointment.
Hapb for all the the knowledge and medicine and treatments out there the MD's don't know. This is something I've had to come to terms with myself . I want absolute answers about my cancer . But there are none. Best that we can do is educate our selves and make the best choice we can . There are no guarantees nor absolutes even in medicine s. They have a good idea how the therapy works and should work but sometimes it doesn't or it works better than they thought. ..But in the end there's only choices and hope for us to make.
For me it's worth the chance .. if I was 25 or 75 it would be worth to take the medicine. Not because Im scared of dying,after 9 surgeries and the depression that doesn't scare me. But I'm worth fighting for. My husband and kids and friends are worth fighting for. But THAT'S me.
Hapb you have to make the choice s for you.If you don't want to take the medicine then don't ..that doesn't mean you are giving up it just means you are making the best choice for yourself. You do what you feel is best ... nobody can take that away from you.
Hugs from TN
Denise
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HapB I am 73 and had no problem with herceptin. They do echos every 3 mos to watch your heart. My bp did go up so I got a med for that
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HapB I meant bp blood pressure. I finished treatment a year ago and my heart is fine
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Oh HapB ... a cancer journey is a leap of faith ... trusting strangers at a time you are in shock ... making decisions quickly that will last a lifetime.
Be informed, study, research, and question but in the end it is like my husband said to me, "Vicky, Dr.M (my MO) is doing everything he knows to save your life."
So, on 22 August 2016, I started chemo. I finish 14 August 2017. I have exercised my fat a** off and increased my MUGA score each time.
Best wishes.
Vicky
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HapB
Did ask about your ten year survival rate?
Hugs ...
Denise0 -
I hope this is ok..
But I got my wig from the American Cancer Society . And I love it! It makes me feel so much better.. I don't look as pale...
they also gave me a wig stand, pins,two head wraps and a pretty carrying bag.. all for free
I feel a little self conscious ....but I will get over it...
Its the little things Ladies .. its the little things
Hugs
Denise0 -
CoachVicky or anyone .. this is what my report said for my
The left ventricular chamber size is normal. The wall thickness is normal. Normal left ventricular systolic function. LVEF 60-70%. Normal wall motion The ejection fraction is calculated to be 65% by Biplane Simpsons. Normal diastolic filling pattern.
is this the same as MUGA report ?
Thanks for the help...
Denise ..0 -
I found this here o BC.org site.. .I thought I saw something about 10 year rate for early stage cancers using Herceptin...
Now this it wasn't with Taxtol or Taxotere but with another chemo...
http://www.breastcancer.org/research-news/hercepti...At 10 years after treatment, disease-free survival also was better in women who were treated with Herceptin:
- 73.7% of the women who received chemotherapy plus Herceptin were alive without the cancer growing
- 62.2% of the women who received chemotherapy alone were alive without the cancer growing
This means that disease-free survival was 40% better in women who got Herceptin plus chemotherapy compared to women who got only chemotherapy.
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denise - echo and MUGA are two different tests, that essentially measure the same thing - you have a totally normal result. Which test docs choose is chalked up to style points.
hap - you are in the enviable, and unenviable, position of making a choice. Enviable because you get to, unenviable because you have to. I know that you know that the figures given by your oncologist are a best estimate based on populations - as I said before, it is either 0%, or 100%, and there is no guaranteed predicting, as you are a study of one. Keep in mind that the definition of early stage encompasses a pretty wide range of patients - from stage 1A to stage 3A. The choices patients make at 1A are likely very different from those at 3A. One of the reasons Taxol plus Herceptin was proposed and adopted as a viable regimen for those with smaller, node negative tumors, is for this very reason. A less harsh regimen for a potentially less problematic set of circumstances in regards to Her2+. You and I are in very different places as patients even though we are both "early stage", I did not have to make a choice really, I would have been a fool to refuse treatment, regardless of the side effects. Refusing chemo and Herceptin would have been a death warrant for me, my cancer was already on the move, and undetected. I had an almost 3cm tumor, not seen by mammogram but could be felt. Thank my lucky stars that the policy in military hospitals is to do ultrasound for any palpable mass not seen on mammo, or I would be dead now. I had a positive sentinel that was not picked up at the time of BMX, was discovered later in the lab. I had to wait for my surgeon for 5 weeks between BMX and ALND because he was out of the country lecturing and already had surgeries lined up right when he returned. Upon ALND I had a much bigger positive node further up in the axilla that had never been palpated and was missed on pre-surgical MRI, so by this time it had been 3 months since cancer was discovered. Due to surgical complications which spawned several additional surgeries prior to start of chemo, the delay to begin chemo was 14 weeks, almost 6 months from the discovery of the mass - well outside the optimal window for commencement of systemic treatment. Just as an aside - I have a very supportive husband, but all decisions for surgery and treatment were mine alone, we didn't discuss options or choices. While it is great that he is here, he is not particularly involved and doesn't know a great deal about my situation as a patient regarding systemic treatment - either chemo or anti-hormonal, other than my surgical travails. He came in with me to the first couple of oncology appointments, but then stayed out in the waiting room after that because he felt that my oncologist was taking too much time explaining things to him, and that was time taken away from other patients. I thought that was actually a very considerate thing to do. He came to the surgical consult with the oncological breast surgeon, but has been to no other appointments there or with either plastic surgeon. He knew I had a firm handle on what was happening, he brought me to the 6 infusions, but has not been back to the center since, and this is just fine with me. I spent 28 years as a military spouse and am used to doing things on my own, I didn't need him there, and he is super busy at work. This may seem odd to others, but I have walked through stage IV cancer with both my dad and only sibling, and helped care for my mom, who had a degenerative neuromuscular disorder for 25 years. I had concerns for myself going forward, but didn't particularly take comfort from having someone with me at appointments. Weird, I know, lol!
Herceptin has been in use long enough for early stage patients that data has been collected - here is some info. Herceptin was added to chemo for early stagers in late 2006, so 11 years ago. This study looked at Herceptin use with an anthracycline based chemo regimen - which has potential for additional cardiac issues, the use of taxane based regimens did not happen until a bit later, but it is known that non- anthracycline regimens reduce the potential for cardiac problems as a side effect of treatment:
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specialk- I just want to say thanks for all the helpful information you share. I learn so much from each of your posts and always feel inspired.
You really are special!
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deni - you're most welcome! It brings me happiness if people find value in what I post - it is my silver lining! When I was first on this site others did the same for me - this is my pay it forward.
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specialk- I would like to follow your example and pay it forward too. Friends and family just don't understand what we're going through so it's comforting to have the support from you and everyone in this group 😊
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