TRIPLE POSITIVE GROUP
Comments
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LeeA, love your photo. What is Curcumin/Bioperine? I remember back when you shared the benefits of Fage yogurt while we were undergoing chemo. Honestly, had it not been for that product, I would have starved because I simply could not eat regular foods during that period. So thanks for the helpful info that you share with us.
Leanne, your fear of your upcoming surgery is very normal I suffered terribly from dread of having it and my fear was worse than the actual experience of it though the drains were no picnic. I took Tylenol only for pain and not much of that.. You may find that sleeping in a recliner or propped upright will help you after your surgery. I wish you well as you undergo it next Monday.
Sending everyone wishes for a healthy and happy new year.
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LeeA, I did some research yesterday and it looks like there are issues with bioavailability. What brand are you using?
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SpecialK - sent you a PM.
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Happy new year ladies!
Leanne I didn't need the pain pump or meds either after my double with 24 nodes removed. I only took one Percocet in the hospital because the doctor, nurse, and my husband pretty much forced me to! Hoping the same for you
I know there are many reconstruction threads but I would rather ask here where I "know" people. I saw my plastic surgeon again last week and he implied that my new boobs would look better with a latissimus dorsi flap instead of just the implant alone. Has anyone here done this surgery? Are most people happy with just tissue expander/implant?
Thanks for the help.
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LeanneF - Thank you!!! Here's what I did for my skin during radiation. I keep a really large aloe vera plant in my sunroom and I would break off 2" long pieces of the plant and squeeze the aloe out and put it all over my breast area and underarm all during the 33 rounds of radiation. I swear that it helped keep my breast skin looking really good. My ps saw me in October and he couldn't tell which one got radiated. So here's what I did... sorry if this gets long... I would put on the aloe from the plant right before I was heading out for my radiation appointment. They told me not to put any lotions or creams on the area right before it got radiated, but I thought the pure aloe wouldn't hurt. I bought a large tub of aquafor and would put that on my breast area and underarm right after I was zapped by the radiation and was in the little dressing room getting dressed. Then I would repeat the aloe and the aquafor application again in the afternoon and then again before bed. Okay, I was a bit obsessed but was so afraid of my skin getting bad and blistering and all the other stuff I had heard could happen. I also did not use soap on my breast but just let the warm water in the shower wash over that area. Towards the end of rads, during the boosts, an area under my arm pit about the size of a quarter started to get raw (probably from the arm rubbing) and I used prescription Topicort on that and also these protective square "pads" that I would place under my arm over top of the aloe, Topicort, and aquafor. It would "adhere" to the underarm and protect from the rubbing but would not stick,... it would just peel away when you took it off. It took 2-3 weeks for that to completely heal after the rads was over. But my breast skin was great and the skin didn't get dark, or red or anything. I know I was very lucky.
About your mastectomy... definitely like some others said, take the darned pills! I learned that the hard way when I unwrapped the bandage wrapped around me and thought I would take a little shower with only haven taken some Motrin. I'm not much for taking pain pills but you really need them. I stayed on the oxycodone longer than I thought I would have but your body knows when you don't need them anymore. They will help your body relax and heal and not feel pain. And I know what you mean about having your Mom over... She drove my hubby a little nuts but they got into a routine of who was doing what... my husband was the keeper of the medications and he had a little notebook and wrote it all down and my Mom slept on the couch in the den with me. That recliner was my savior, seriously. My ps said it kept my body in the correct alignment and my arms where they should be. To make the recliner more comfy, my dh took the "egg crate" looking mattress pad from our bed and folded it in half and positioned it onto the recliner, stuffing the edges into places. He then put a sheet over it. I felt like I was sleeping on air. I had one of those airplane neck sleeper thingys that go around your neck and put the end table beside the recliner. I did buy one of those "grabbers" and actually had to use it more often than I thought. I did buy a lot of button up tops/pjs and stretchy pants and got some zippered hoodies. My ps suggested just buying sports bras with the front enclosure (hook or snap) at Walmart... no since spending a lot of money on them.
Pbrain - I'm so glad I could make you laugh... I think my hair was just getting to me the last few days and people telling me to "keep it short, they love it" ... I needed somewhere to vent... LOL I do keep telling myself that it's better than having to wear all those darned hats I bought. My hair was really long and thick and about to my waist and yes, I do miss it sometimes to be honest but I am just letting it grow and am not allowing anyone with scissors anywhere near it! lol
Moonflwr912 - Thank you! I have been over to the exchange board and need to get back over there since my surgery is coming up next month.
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Happy New Year everyone!!!! SpecialK, what is vaccine trial booster?
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Hello ladies!
My wife is 26 and triple positive, and I've often checked this forum for support. I was wondering if anyone lady here (premenopausal) have opted to remove their ovaries as treatment option to reduce the estrogen and progesterone flow (something I hear the ovaries are fond of pumping out). We're still in the neoadjuvant phase, currently receiving TCHP, then bmx surgery, another year of herception/perjeta, most likely radiation, and then 5-10 years of tamoxifen. So our treatment plan is robust, but I wonder if elective ovary-removal would be something to think about considering she is quite young, and this seems are sure-fire way to reduce the flow of hormones. Maybe after we have kids? I dunno. Just wanted to see if anyone had gone that route and your experience... Thanks and thanks for your inspirational stories!
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Ben, that is one tough question, and a very personal one for you and your wife to decide. If her ovaries are removed, are you planning to do ovarian stimulation and harvest and freeze some eggs?
Maybe you make an appointment with the MO to see what she/he thinks about this? Does your wife carry the mutated BRCA I or II genes?
Really tough question, so I'll let the others weigh in. Good luck to you and your wife on this journey. It does end and things do go back to normal...slowly....
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Hi ladies
Happy New Year! Well I just finished my first TCH treatment today. Went a lot better than I expected so I am a happy camper...at least for now. Just waiting for SE to kick in. Hopefully won't be bad. But funny thing is as soon as I got home home my eyes starting burning and are real dry so I had to take my contacts out. Could that be a SE already or am I just over thinking?
Also they gave me a steroid for 2 days but also anti nausea meds if needed. Should I wait to get nausea to take those meds or take them anyway just in case? Just wondering what some of you did!
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Special K, your friend will be very well cared for at Moffitt. Just pm me if you want my thoughts on specific docs.
Leigh, thanks for the advice. That's perfect! I have an aloe plant on my patio.
All, thanks for allowing me to use this board for surgery and radiation advice. There are boards specific to that, but this is really the only one I follow, so I feel like we're friends.
Much love and peace. I will report in after surgery. Keep me in your thoughts and prayers next Monday morning.
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LeannF,good luck on your surgery. keep us posted!!! will be thinking of you. Ramey, do not wait till your nausea kick in. Make sure you take your med on time.
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Leanne-Good luck on Monday. I'll be thinking about you.
Ramey-Happy to hear you made it thru your first treatment. I waited on my nausea pills-think I only felt nausea three mornings when I first woke up...I did take the pill at the very first feel of it though and never got sick.
I do round two on Jan 10...ready to kick some cancers butt and get this behind me.
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Ben ~ I am pre-meno {35 yo}, 100% estrogen receptor positive, I do NOT have the BRCA mutation, I did neo chemo, just had a BMX, am still getting fills, and will be starting radiation this month. The question of ovary removal is a good one, and one I think about often, but let me tell you what my current plan is so maybe you can see one of the options your wife has.
I am having my ovaries suppressed with an injection {zoladex} every 3 months. The hope is that this injection shuts off my ovaries and therefore their estrogen production. In February, they will measure my Estadiol levels to see if the shot is working {fingers crossed, knocking on wood, and throwing salt over the shoulder that it is!}. In addition to the shot, I am on Tamoxifen, which I started prior to radiation {this isn't normally how it's done, standard of care is usually starting tamox after rads, but I did a lot of research and everyone is comfortable with this decision}. When the onc mentioned the ovarian suppression, my husband and I asked about ovarian removal and if it was better. I was told that {providing that the shot works} that it's the same as suppressing with the shot EXCEPT for the fact that surgery is obviously completely irreversible and throws a woman into immediate and permanent menopause.
As far as whether ovarian ablation {either by suppression or removal} + tamoxifen, is better than tamoxifen alone, well the jury is still out on that one. There are currently trials going on, the SOFT and TEXT trials to look at just that. They have been running the studies for 10 years and preliminary data was supposed to be reported in 2013, last month in fact, however, EVERYONE in the study is doing "better than expected" so they have extended the trial timeline in order to meet "recurrence criteria" so that they are able to show statistical significance {or not} between the different courses of treatment for pre-meno women. So, that right there, everyone doing better than expected, is a good piece of news. :~)
I wish you and your wife well!
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Also, good luck on Monday Leanne! Annnnnddd.....I think I better be getting an aloe plant, are they easy to care for, I pretty much have a black thumb. :~)
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Vettegirl - I'm with you all the way! Can't wait to get this over with. 1 down 5 to go!!!
Leighanne- Good luck with your surgery. I believe you will do fine.I will be thinking and praying for you.
Soriya-thanks or the advice. I won't go anywhere without them!
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Ramey-yes-that is what I am doing too....counting down. The good news is after Jan 31...I will have three under my belt...think my last one is April 4 if all goes on schedule. I see you have had your surgery already so you are ahead of me on that. I am waiting to get my Brac test back to determine if they want me to have lumpectomys or masectomys...I am praying for lumpectomys, but will do what I have to do.
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ben50 it's a tough decision and many things to consider. Estrogen protects the bones, heart etc too. So removing the ovaries at such a young age might not be the recommended course. You two really need to ask the doctor(s) about the pro's and cons. Right now it seems Tamoxifen is prescribed for 10 years. Some women take lupron to surpress the ovaries so they can take one of the AIs (like Arimidex/Anstrozole, etc.) Tonlee the gal who started this thread did choose to remove her ovaries but she was in her mid 40's at the time.
Yay Ramey. I never had any nausea so I never took any of those meds. I chose to wait till I got a symptom but if I had the least bit I would start right away. You don't want to wait till it gets bad. Also be sure to drink lots of non caffeinated/no salt fluids. Soup counts. The first 3 treatments weren't too bad at all for me. Hope you have the same experience.
Good luck LeannF !
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Ramey. I did have nausea. Take the pills if you even feel a bit queasy. It's easier to stop it from starting than to try to stop full blown puking. You can get dehydrated fast. Ask me how I know. So please do drink drink drink. My worst days were days 5 through 10. Good luck.
And Leeanne good luck on your sx.
Ben. I am sorry you and your wife are in this position. It sucks big time. Hard decisions all around. Try searching on taking a tamoxifen break to have a child. I think there's a thread on here that has that discussion, or start one with a question on that if you want. But you will need a talk with your MO in depth.
Vettegirl, hello again. Sometimes there are reasons for lx or MX or BMX you don't think about when you first hear. It's good you are open to whatever comes. The one constant on this trip is the "Scenic Detours" that happen! Hopefully you won't have any.
Much love to all.
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Lago ~ Another option, the one I am doing is ovarian suppression with tamoxifen instead of an AI, for the very reasons you stated, tamoxifen has a bone protecting property! That's also a part of the SOFT trial, tamoxifen alone v. tamox with ovarian ablation v. AI with ovarian ablation.
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Whoa quite the plethora of response already, thanks so much for your helpful feedback, I can tell you're all a very supportive group!
Pbrain – Thanks for your consideration! Fortunately, my wife
tested negative for mutations in the BRAC’s in addition to some of the other
big mutations, including PTEN, CDH1, STK11, and TP53. After a torrent of bad to
not-so-good news, it was the first result that made us a little more at-ease
hah.TwinMama – Thanks a lot for your reply! Your own path
definitely gave me some information and things to consider that I had not previously.
Your Dx is quite similar to my wife’s. We were actually never diagnosed with a “stage”
– just all the facts that we presently know. Grade 3, Tumor: 27mm, only
evidence of 1 positive lymph node, so I figure it’s at least stage II at this
point. Like you she is also 100% estrogen positive and 50% progesterone, so yes,
quite hormone-fueled. This is probably me trying to comfort myself with no research
to back it up, but I feel like the more the cancer is dependent on hormones,
the more hormone-specialized therapy will be! That would make sense to me at
least heh.Also, I was not aware of an ovary suppresser that came in
shot form – definitely something to ask about! Additionally, I wasn’t aware of
these studies, and will now follow them with great interest. Do you have any
idea if you go the “suppressing” route, can you still procreate in the future??
I appreciate you and your response. It was very helpful to me!Lago – Thanks for your input. I honestly had not considered
what additional repercussions removing ovaries might entail for my wife. I
suppose in my male-brain wisdom, they served pretty solely for baby-making.
There are obviously more variables to consider and weighing the
options/benefits/side effects regarding a decision like this.Moonflowr- Thanks for your support. That is definitely one
thing we have considered, going full tamox for 5 years, breaking for a baby,
then going for another 5. I know there is no good time to get breast cancer,
but that day we got the call really did change the life as we knew it in a
matter of seconds. We immediately struggled with fertility issues, getting IVF
right away or not, or just go straight into treatment and gamble with losing
the chance to conceive. We choose the latter after learning how long the
process of IVF was going to be, and were comforted when our onc told us my wife
had around a 75% of retaining fertility with our particular chemo cocktail. While
in a way its good we don’t have kids going through this for obvious reasons, I sort
of wish we already did so it would making fertility issues much easier. Sigh…
as with everyone else who has this disease, a lot of hard choices to make.Thanks a lot, ladies, you’re all great!
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ben, welcome to the group, although I am so sorry your wife has been diagnosed,, and your lives have been turned upside down. We all know how traumatic this is.
The other side effect to consider with removing the ovaries is that it could cause sexual dysfunction issues. To be blunt, without estrogen, many women develop significant vaginal dryness which can really cause difficulties, as you can imagine. This is a quality of life issue for you both. You can use vaginal estrogen (very low doses, very effective for this issue) if on Tamoxifen (b/c the Tamoxifen theoretically blocks any estrogen that escapes), but not all oncologists will agree with this.
So disadvantages of ovarian removal are you lose the protective effect estrogen has on women's hearts, significantly increase the risk of osteoporosis, and likely will face sexual dysfunction issues that will need to be addressed.
Advantages are really reducing the estrogen, of course, which fuels the breast cancer, so it would theoretically reduce the risk of recurrence further.
There are so many difficult decisions to make along this path. As my husband likes to say "Gee, we get to pick the prettiest turd in the bowl".
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soriya - I am involved in a Her2+ vaccine trial. I have completed the active phase of the Trial where I got two injections every three weeks for the last six months of 2012. Now I just go every six months and get a booster injection and lab work.
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SpecialK, Vaccine Trial sounds very interesting. I will ask my MO if there any vaccine trial for Her2+ in Orange County, California.
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Ben ~ I also was not given a stage prior to surgery, the pathology you see below came after surgery, but the tumor size was based on the original "tumor bed" that was removed and not the actual remaining "active" tumor which was removed {which was less than 20% active}. I knew about the 2 nodes prior to surgery and was completely worried that they would find a ton more in there that just didn't show up on imaging. I was SO happy that wasn't the case!
As far as your question about fertility post suppression, I'm not sure, that would be a question for the doctor. All I know is they told me that I would be on the shot {which is actually more like a pellet they put under the skin} for 4 years, after which my "cycles" might return. So to me, that says that ovarian function could return. There are actually two ovarian ablation shots that I know of, zoladex -which I am getting, and lupron, but don't ask me the difference b/c I don't know. :~)
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Ramey, I was told by my oncologist's office to start the nausea pills right away and not to wait for nausea to start. It is so much easier to control the nausea before it get's started--much harder after its started. I did what he said and never experienced nausea. Good luck. Be sure to drink plenty of fluids.
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Ben, just a fun thought. I have close friend who has 3 children. They did IVF and for all 3 kids the eggs were removed at the same time and fertilized at the same time. His kids are now 15, 12 and 10. Now how cool (and strange) is that? Keep in mind at your wife's age, she will likely produce a good amount of eggs if stimulated now. Then you can just sit back and watch the baby train. And Dance, I love your husband's thought. Yeap, I struggled sometimes in my treatment to see which turd was the prettiest!
Ramey, I can't stress enough, take those stupid anti-emetics now and keep taking them on schedule. I never threw up so much in my life as I did two days after TCH. I felt like my regular self the day after, but then all hell broke loose. They are generic, cheap and in my eyes a lifesaver. But oh no, I didn't need them so I didn't take them and I ended up hospitalized. Moon is right, dehydration happens fast, even for us grown ups!
So Q for you guys. I'm struggling with elevated ferritin. I'm anemic and had low folate on my last blood test with a sky-high ferritin. My father died from complications of hemochromatosis (hepatocellular carcinoma, primary, which is not common in the US). I had genetic testing done and just got my results saying I'm heterozygous for the hemochromatosis gene mutation, which is to be expected, but no, I'm not homozygous. Now I need to explain my high ferritin when I barely have a red cell to speak of.
I'm guessing it is the lack of folate? I need to go back to biochem 101 to figure this out. Cancer sucks!! I used to be so healthy!!!0 -
Ramey, here's a little info on fluids (from my oncologist's website). I drank 2 liters of water a day for the entire time I was on chemo and herceptin.
Fluids: Unless you are told otherwise, drink 2 to 3 liters of fluids for the first 3 or 4 days after treatment. In addition to water, teas, juices, milk, broth, sport drinks (Gatoraid) can all be helpful, and may be diluted with water if the taste is too strong. Consider making popsicles out of your favorite drinks
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I drank fluid all the way through. Continue to do it to this day. It's great for your skin, teeth and body. Washes out the crap. Also helps prevent UTIs if you get t hem.
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good morning ladies and happy new year! Sorry I've been AWOL, I've had a rough week.
Without moaning too much, my back is playing up, and I've started to get pins and needles in my hand so the appointment with the surgeon has been moved up. The knee that's just been operated on got very painful again, so I had a ct scan on Thursday. Seems there's a fracture in the tibia, totally unrelated to what was there before or to the operation, so I have to see that surgeon again too.
Hope you're all doing well, I've a few ages to catch up on so sorry if I've missed anything. I'll catch up today - no medical appointments for the weekend!
Nicky
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Awe Nicky wish things like this would stop happening. Keep us posted.
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