TRIPLE POSITIVE GROUP
Comments
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Linda- Great to hear that you are doing well. Hooray.
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linda, good job! now your only job is to please please please do as the others have said, and force your self to take it extremely easy, and watch for signs of swelling on your arm, just in case, and ice and rest. ice and rest. and treat yourself to ice cream, or chocolate, if you must!
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glad to read you're doing well Linda, and tentative congrats on being node negative.
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thanks all for the good thoughts but what should I be icing? Drs didn't say anything about icing anything?
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I was swollen all over after surgery. My upper body looked so deformed for a while. It took some time for the swelling to go down. I was never told to use ice.
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Can someone tell me if you pay for trialsor do they bill Insurance?
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Most trials from what I've seen you do not pay for nor does your insurance.
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goutlaw - most trials are paid for by the company testing their experimental drug. These companies are hoping for accrual of enough beneficial evidence, and low enough risk, to bring their drug to the market. I have no costs associated with the trial I am in, other than travel expenses to get there. I was also involved in a stress reduction study locally at the U of S. Florida, which was a project by the School of Nursing. It did not involve any drugs, but rather was observational and quantified with blood and saliva samples, all at no cost to me. I did have to commit to several hours one day per week, for six weeks.
linda - I have never iced either.
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Hey Ladies,
Got a question for all you. Do you think the immune system is still weak 2 years after chemo? I had got a cold a month ago had it all month finally my doctor gave me antibiotics and with in a week I was finally mostly over it. Hardest cold I think I ever had. That lasted 2 days my husband got it now I am getting it again. Well it was nice to breath for 2 days. Now I have no antibiotics left so called the doctor left a message hope she refills it or I am afraid I will have it for another month.
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Between November and February I had 3 colds... I usually get 1 cold a year. January made 3 years PFC. So yes I think it takes time to get the immune system back in check but also we are older and I think the colds going around this year were really tough. My DH had a tough time getting rid of his and he never had cancer treatment.
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....if it was a cold, i am surprised that they did give anti-b's, unless they were afraid that it was turning into pneumonia. but about the ice, i always notice that after a biopsy, they give me an ice-pak, and tell me to lay low and ice as much as possible, to keep the swelling and pain down. so i guess i was thinking maybe it would be a goood idea after a surgury too... crap.. i dont know! i wish i was more help! maybe the reason they dont tell you to ice after surgery, is, maybe the cold slows down the healing blood flow to the area. i dont know! but then again, maybe if i had iced after lumpectomy, maybe i wouldnt have developed such a huge hematoma. i was just planning myself on if i ever have another lumpy, i was going to ice it, to see if it helped with the pain and swelling, like they do with biopsies. i will try to find out, and bother all docs with that question! i am sorry, i dont want to be practicing medicine without a license, or steer any body wrong! linda, can you ask? anyway, the very best to you in your recovery and further adventures! and i will zip my lip now....
i was wondering that too, about how long it takes the immune system to recover from the assault, and also what kind of supplements/ activites/etc, would seriously boost it?
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First day of spring!
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Hey Kathec,
I will ask my PS on tuesday about icing - or maybe ask the visiting nurse today! I did ice after my biopsies and I am sure it helped but I think maybe with the size of the incisions and how fragile the skin is that icing would not be a good idea - but I am not a doctor and I don't play one on TV either lol. Also - the colds this year are really bad - everyone that I know that has had one has had it for about a month and my hubby had it twice and he usually never gets sick
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ang, I had seemingly the same cold twice earlier this year, and I know a few other people who had the same experience. Otherwise I would have been worried about my immune system functioning as well.
goutlaw, for the trial I'm on, I pay everything I normally would have paid, but for anything that would not have been required but for the study, they are supposed to pay for it. Honestly there have been a few things I thought were kind of iffy.... For example, I had my usual copay for chemo, and they administered either perjeta or a placebo at the same time. If I needed an EKG for the study and it was also something my doctors wanted, I paid my usual copay. If I see my doctors on the schedule they want, I pay, even if the study also wants me to see the doctor at the same time. However, if my doctor doesn't feel the need to see me but the study people want an onc visit in that time frame, study pays. The idea is I pay everything I would have anyway, but not more.
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I would be wary about icing because you have very little skin sensation and can't tell if you are getting too cold. Same with something that is hot. Also, your skin is thin and laid over your pectoral muscle. After a biopsy you still have breast tissue so you are icing tissue, after a MX/BMX you are icing skin and muscle.
kathec - for your hemotoma, all the ice in the world probably would not have helped, but your general swelling would receive benefit. Hematomas develop because they pierced a blood vessel with the core needle, so icing won't necessarily slow that down much.
On the immune system - I have not had a single cold, flu, virus, etc. for several years prior to BC and since treatment. Neither my DH or I are prone to colds. So, other than the cancer thing - really healthy, lol!
goutlaw - I also think that costs are dependent on the trial you enroll in - if it is run through your local center you might have costs like cypher. Some trials have broad access, others don't. I travel to the trial as it is only in limited locations and have no insurance paid costs at all.
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Ang it's me who knows nothing but I have my own theory. First colds have a limited time to be in u'r body and after, that they are no longer colds but some type of infection--Now I really was a one a yr cold person and no sinus problems--Now I have sinus infections all the time (so does my sister) and they mimic colds at first but when they last to long it's not a cold that's why they gave u an antibiotic. Now if u'r cough is deep and u feel it in u'r chest it might be a respitory infection or more--if u cough and it's not deep and a lot of phlem comes out chances are it might be connected to u sinuses now. Remember this is not Dr. tested nor is it written anywhere--it's just me.
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YAY Linda! You go! You're on a journey, but you will be just fine. Take it easy and heal.
Ang, I had your cold. I was horrified. It lasted a month and didn't seem to get better. I was running a low grade fever some days and just dragging. My coworker told me he'd had it and finally went to the doctor. He's like me and knows viral illness doesn't respond to antibiotics, but he was just sick of being sick. Turns out he had walking pneumonia (yes, it still exists, even though the name is defunct). It is when you get a cold and because of all the mucus in your lungs, you develop a bacterial infection. I went to my doc the next day, got augmentin, and am finally feeling like myself. So I don't think it has a ton to do with chemo, there is really just a nasty bug out there. My doctor saw me the day I called and she said this is really going around, no big deal, here are the antibiotics.
Gout, you can get paid for trials, but it isn't that common. Most trials that pay will only give you dollars for travel, missed work, etc. If they are incentivizing you with lots of money, that is usually a phase I trial for a drug (first human trials) and those are mighty inconvenient (usually a hospital stay with a lot of limitations on food, water, sleep or whatever they want to study about the drug). I had buddies in Philadelphia that did those to make bucks and I'd ask them what the heck they'd been given and they'd always say they had no idea...except 500 dollars...tee hee. Wonder if they are still alive...
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cammi, by golly! i think you are right about that! probably anytime yuck mucous is sitting around stagnating, is an opportunity for an infection! so, i dont want to hear anymore from you, thinking you are not smart enough to help women here! you are.
and like you, specialK, me or my manfriend never ever get anything! well, xcept i got bc. Ha, so except for that, am really healthy! the huge hematoma i had was after lumpectomy, and it lasted a long time, months before it resorbed. so i think that they did nick a blood vessel.
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Thanks ladies, for all your info
Much appreciated
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Hi triple + ladies! I have a question that some of you May can help me with. So far I've had a lumpectomy and TCH. MO is recommending double mastectomy and hysterectomy as well after chemo is completed. 2nd opinion recommends the double mastectomy but not the hysterectomy. I'm 34 years old and have chosen to do both surgeries. But- reading a lot of profiles, this treatment plan doesn't seem to be the norm. Is this an over kill of treatment??
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Nunci, I am glad that you found us. It would help if we knew what your diagnosis was. We have all had different treatments because we all have a different diagnosis and staging. What have they told you so far about your type and stage of BC?
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bren58, I didn't realize I had my diagnoses set on privacy. I'm triple +, IDC, <2cm tumor, 0/3 lymph nodes, stage 1, grade 2. I have lots of cysts in my breasts and breasts are dense. (Reason for double mastectomy). Hysterectomy is to keep from taking tamoxifen (MO says).
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Nunci I would recommend getting a 3rd opinion. As far as the mastectomy it really depends on so many things. Sure if you have a large tumor and small breast or several tumors it's recommended but it also depends on location and a whole host of other things that we just don't know... and your doctors do. I had a BMX but that was because cancer side had large tumor and I had small breasts and some LCIS in other breast. I too had dense cystic breasts. But you might want to bring in this article to your surgeons and ask what they think. It was posted by Dr. Susan Love yesterday on her facebook page: linky
As far as the hysterectomy. Get that 3rd opinion. Losing ovaries so young CAN put your bones and heart at risk but it might be the right course for you. So far none of my friends in their 30's or 20's that were diagnosed had their a hysterectomy unless they tested BRCA+ or had a family history of ovarian and breast cancer.
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welcome and best wishes Nunci!
For all you who are in the midst of treatments now and perhaps struggling today... Just want you to know today I am 2 years NED..
.I feel great..am able to exercise, have lost the weight gained during treatment. Have hair, brows and eyelashes all at the same time!
I have also learned to live in the moment .. Need reminders some days...
Trying to do it better the rest of the way!
Hang in there and try to enjoy something in every day!
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Ashla, yay congrats on your 2 yrs NED n many many more!!!
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Ashla, congrats!!!!!!! Yay!
Nunci, I second the advice to get a third opinion. A hysterectomy at a young age can wreak havoc on your sexual life and your bones and heart. Perhaps he wants to put you on an AI instead of Tamox? But if that is the case you could do shots to shut down the ovaries temporarily and take an AI - that way you don't permanently remove the ovaries. And many are fine with Tamoxifen only, with no hysterectomy needed.
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Nunci, I vote no to surgical overkill. You are so incredibly young to undergo a hysterectomy and double mastectomy. I would agree that getting a second opinion would be a positive thing to do.
Ashla, congrats on having NED and on feeling really good again. And hooray for hair.
I am experiencing spiking blood pressure due to Herceptin and letrozole and feeling reallly lousy most of the time. Anyone else have problems with blood pressure as a result of these drugs?
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nunci, I agree with the others, get that 3rd opinion! 34 is very young to have your ovaries removed. I was 41 when I had my BMX and for me it was the right thing to do, but everyone is different and has to make the decision that is right for them and their situation. Make sure you get all the information before you make your decision, you have to live with the results of your choices for the rest of your life.
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i am with honeybair. that DOES seem like overkill. Can you get a 2nd, and possibly third opinion? Or at least ask the reasoning behind that plan of attack? it does seem pretty xtreme for a medium grade, and no nodal involvement. maybe because, does your insurance not cover the braca test? you can see my profile. and if it ever comes back, it will be off with them, happily, for me. i just wanted them a little while longer. And doing the hysterectomy would be awful, at your age, i have heard that it also affects the depth and quality of orgasm, altho that is not the most important worry you have now.
ashla, congratulations! and many more! i was looking at your dx, and tx, and so, you are counting ned from surgery date, since you did neo-adjuvant? i am just wondering when my anniversary would be? surgery date? or final chemo date? or final radiation date? do't know, but i know that sometimes, they call you a survivor, since the day it was discovered, even before treatment. thats weird, since you still have it in you. but, xzactly when is there no evidence of disease? im stumped.
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Ashla Congratulations!!!
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