TRIPLE POSITIVE GROUP
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tres - yay!
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Tresjoli2 great news on the lump being a cyst whew!!!
Agree that the ovaries provide many benefits which is why I keep pushing this surgery off. But shutting down and removal do the same thing albeit one is permanent. My MO said having too much estrogen is never a good idea. If i can never stop the shots and wake up the ovaries im not sure what benefit they provide Confusing
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Do the ovaries provide benefit when in permanent menopause? Could this be a factor?
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Special K: Thank you very much for the reply. This is exactly what I needed to know. I will dig into those studies and article tomorrow. Good info about the various generics. I know that can make a difference with all drugs; for a family member with a non-cancer chronic disease, the doctor allows his patients only the brand name and one specific generic, because clinical studies actually showed a deceased efficacy with other generics. So I suppose the precise makeup of the drug may, but not always, make a difference.
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Awesome news, Tresjoli! My OB/Gyn wasn't too keen on ovary removal either. So, I'm still doing my monthly shot. However, my OB/Gyn has retired, and I'll be seeing his partner soon. (Old OB/Gyn: "I have bad news and good news for you. The bad news: I'm retiring. The good news: you'll now be seen by my partner, who is younger and better looking.") Maybe, New OB/Gyn will have other ideas.
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On Oct 7th I had my first dose of Herceptin only. I noticed the following day my knee was really aching - joint pain. It was really achy and stiff for about 3 days and then went away. I noticed today it seems to have flared up again. Anyone else notice this with Herceptin and any good recommendations to ease the stiffiness and pain?
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heather - how long was your H only infusion?
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They did it in 30 minutes. It I'm going to request an hour for the next one.
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heathet - I had H with chemo at 90 minutes, no issues with pain. First H only they did at 30 minutes - which is within infusion guidelines. I had intractable hip and leg pain, asked to slow the infusion back to 90 minutes as it was during chemo and had no further pain issues. It is certainly worth trying a slower infusion, it has helped a lot of others. Let us know how it goes!
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SpecialK - thanks again for awesome links. I found the first one very interesting as I was a very strong HER2+ and I hate Tamoxifen so I'm going to send this to my MO and ask his opinion on it.
Heather - asking for a 90 minute infusion was key for me. I still had some SEs but not nearly as many or as severe if I made the infusion longer.
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I wanted to say hi. I am new to the group.
I am triple positive and was directed towards this group. I am being treated in Stockholm, Sweden. I am just now learning more about my cancer because of simple fear trying to take one step at a time. It has been so much to handle and take in since I found out this summer. I immediately started on chemo (FEC) to later move on to the treatment for HER2+ with taxol, I am getting my second dose of perception (12 doses) and perjeta (3 doses) next week.
It helped to try to fill in the signature on this website and find out more about my diagnosis in the meantime.
There is no place where they ask for Ki67 score, mine was 30%, or does anyone know? I also do not understand the percentage, mine is ER+ 100% and PR+ 85%. It sounds like high numbers..
My problem now is that my tumor has not yet shrunk so now I am worried about that. What happens then?
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Heathet, i am ER+ 100% and you ER+ 95% ..this is something i do not understand, the percentage...can someone explain please?
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kattis - the percentage is calculated by the pathologist who is looking at 100 cells under the microscope after staining and counting how many out of those 100 have an estrogen receptor. In your case all of the cells had estrogen receptors and 85 of yours had progesterone receptors.
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For some reason it does not sound good SpecialK...or maybe I am wrong?
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Kattis, actually being estrogen positive is not a bag thing, it means that estrogen fuels your cancer and removing estrogen can stop the cancer from recurring. There are treatments for this, although some don't like the side effects of the treatment. Nonetheless, highly effective treatments exist. The alternative to being estrogen positive would be estrogen negative, triple negative if you didn't also have the her2+, (which also has targeted treatments - perjeta & herceptin). So gals who are triple negative have fewer treatment options available.
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Kattis,
I was 95%ER+, 95%PR+. As a result, my oncologist has prescribed Aromasin, which I tolerate fairly well. But, other possibilities are Tamoxifen, Arimidex, and Femara. I'm happy that I can do something to prevent recurrence, so I don't mind taking hormonal therapy. Hope you had a good meeting with your oncologist!
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Hi ElaineTherese,
Yes my meeting was good. I found out a lot more, I am triple positive etc but as you embark on this cancer journey there is so much information and so many new terms to learn that it takes awhile for it to sink in, or perhaps I just do not want it to sink in..:)
I am still scared of any scans of my body but since the nodes were negative I understand there is only a 5% chance the cancer has spread threw the blood instead of the lymph. It is not normal practice to scan if the nodes are clear.
My ONC told me that he has seen patients with small tumors that has been deadly and very large ones that is reacting well to treatment and survive many many years. In my case it is just to early to say if the treatments will work. So far my tumor has not shrunk and that scares me a lot at the moment. I hope for other news soon as he will send me for another mammogram to check the status. I was on FEC 3 rounds (every three weeks) until my treatment recently changed to taxol, herceptin and perjeta. He also told me that there is total submission in about 25-30% of the patients, I am hoping I will be in that group..:)
There is a lot of hope, you just got to keep reminding yourself just that sometimes.
When my Onc is doing his exams of my breast he always says - I think it has soften a bit.. He is seeing many many patients so I suspect he is saying this to everyone to keep moving forward with hope instead of despear...
Thank you for your reply. Are you taking the hormonal treatment as pills? or? and is it during the hercaptin treatment?
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Thank you Debiann,
You just gave me a much needed dose of hope..I guess after the year of hercaptin the battle will continue with other drugs for the hormonal treatment, or do you get them during the same time?
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I think many begin the hormonal treatment while still on Herceptin, after the other chemos end. If you have other problems going on or difficulty tolerating the Herceptin, they may wait. I had an MX immediately following my first 6 chemos. I started Arimidex a couple weeks after surgery while still on Herceptin. I haven't had too many problems with Arimidex. Joint pain in the beginning, but that has subsided. I've had some more bone loss and with be discussing prolia shots with my onc next month.
I do however have a new condition, chronic venous insufficiency. Compression socks are helping. Anyone else have this? Is is an SE of AI's or the other cancer tx? Can it be an indication of a recurrence? The fun just never seems to end.
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kattis - I wanted to add that patients with higher expressing levels of hormonal receptors have a statistical survival advantage, particularly over those with low levels of estrogen measured at less than 10%, or those with high ER+ but low PR+. That yours are both at higher levels means that endocrine therapy has a better chance of providing you benefit.
http://www.lbbc.org/news-opinion/should-low-estrogen-receptor-status-be-considered-positive
Also, I had surgery first, then chemo, then a month later started endocrine therapy while I was still on Herceptin only infusions. I think it is also common, particularly in higher estrogen receptor expressing patients to see more response to chemo once the targeted therapies (Herceptin, Perjeta) have been added in, than when it is chemotherapeutic agents only.
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Hi Kattis!
Keep your chin up; I agree with Special K that you may see more response to the Taxol + Herceptin + Perjeta infusions. I began my Aromasin (which is a pill) during radiation and while I was getting treated with Herceptin alone. I take it every day in the morning, after I've eaten something. Hope your tumor starts to visibly shrink soon!
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Oh ladies, thank you so much for your replies and links...it warms my heart..who knew that it could be positive to be triple positive..:) joking aside, since I am thinking my tumor is growing, perhaps because I can really feel and see it now, being aware, it might be my imagination but my ONC is sending me for a mammogram on the 31st of Oct to make sure.
Fear is such a huge thing in all of this. Again thank you all. Monday is only my second injections of herceptin and perjeta so I hopefully have a long way to go.
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Rozem,
I've been having terrible pain in my shoulder and arm and wondered if radiation was the culprit. You mentioned breaking down the scar tissue. How do you do that? Physical therapy? Massage?
Thanks
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hi jpr143
What helped me immensely was going to see a Physiatrist- this doc specializes in Muscle Skeletal issues. The issue with rades is it tightens up and creates a lot of scar tissue that needs to be broken down She referred me to a massage therapist that specializes in after surgery scar tissue. Stretching excercises for maintence are so important. I can't tell you how much better I felt after a few sessions and keeping up with my stretches at home. PM me if you would like more details
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hello ladies. Checking in tonight because I am feeling a little bit blue. I hit my one year anniversary of being on tamoxifen.
I don't know..I miss my estrogen. My feet hurt so much, and my elbows, and my joints creak and pop. I'm 41! I feel 90. And something about hitting that anniversary. I'm not sure I can hang in there like this for 9 more years
Sigh. Sorry. I had been doing so well but am throwing myself a bit of a pity party at the moment.
Thanks for listening...
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I'm sorry Tresjoli, we all need a pity party sometimes. Treatment is hard. I've been on Arimidex 2 years. I've found that the aches and pains and even the hot flashes have greatly improved since I started. The first year was the worst. I'm older than you, so I had some aches and pains to begin with, so I'm not expecting to have none now. I hope things get better for you.
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tresjoli2. 42 when I was slammed in to menopause. It SUCKS. Estrogen is truly the fountain of youth. I get that we have to do this but it really does suck( did I use that word twice?!!!) vent away my friend
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I just wanted to comment on the Perjeta. It seems a lot of ladys here has not been getting this drug and some that are getting 4 or more doses before surgery. I am getting treated in Sweden and here the "national" standard treatment for Her2+ patients are 3 doses of Perjeta before surgery and 12 doses of Hercaptin over a year. I understand the drugs are very expensive so perhaps the Swedish guidelines are a bit low. I moved here over 10 years ago and no longer have a US insurance so now I am "stuck" in Sweden..:) It is ok, I was born here but lived and worked in the US most my adult life and became a US citizen. I am 55 now. It seems different countries might give different treatments so I am very interested in reading signatures and treatment plans on this board to compare. Some countries do not offer Perjeta at all.
I just noticed I am developing a rash between my breast and on my back, but I would be damned if I can not take the treatment I am given so at the moment any side effects seems minor to the fact that the cancer needs to shrink.
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Hi Kattis!
Some of our triple positive sisters received their treatment before Perjeta was available in the United States, so you won't see it in their signatures. It is difficult for our triple positive sisters in Canada to get Perjeta, either before or after surgery (neoadjuvant chemo is less common there). In the U.S., insurance is most likely to pay for Perjeta if your tumor is bigger than 2 cm., and you are getting it as part of a neoadjuvant (before surgery) regimen. My tumor was 5 cm., so I qualified. I received 4 doses of Perjeta with Taxol and Herceptin. Some of our triple positive sisters were able to get Perjeta after surgery, thanks to the efforts of their oncologists. So, yes, there do seem to be lots of different treatment plans out there!
About the rash, that may be due to an allergic reaction. You may want to ask your doctor to slow your infusion rate down.
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kattis - you may also be able to receive Benadryl as a pre-med prior to infusion - it may help with the rash. Taxanes in particular cause rashes, I was given Benadryl prior to each of my six chemo infusions, but discontinued when I moved to Herceptin only. Also, while I met the criteria for Perjeta - tumor larger than 2cm and node positive - it was not available for use for early stage Her2+ breast cancer when I was treated, so I am one whose sig line might cause confusion.
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