TRIPLE POSITIVE GROUP
Comments
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Thx everyone for your good wishes. For all who are after me...it was as pleasant an outpatient procedure as one could have.
Thanks moon..I was a bit drugged up when my bs told me about the port going to pathology. I was beginning to think I'd dreamed it up!
He showed it to me. It was in a plastic bag and it looked like there was some clear solution with it.
I have always had issues with cautious anesthesiologists and was worried my PVC heart stuff might postpone deportation. I had the nicest young anesthesiologist this time. Just wonderful and......he had had colon cancer himself! I didn't want to pry but I got the distinct feeling he is not out of the woods yet. We share the same oncologist.
That's twice this week ...my infusion nurse last monday.... that I have had caregivers who at this moment in time seem to be sicker than I am.
Is there anyone who isn't touched by this awful disease?0 -
Ashla, this summer when I was having radiation I was ofcourse complaining about my lack of hair and to my surprise the radiology tech ( a male ) said" look at my hair a year ago when I was having chemo I had no hair." We never know just how many people we meet daily that have or have had some kind of cancer. The numbers are staggering. I hope and pray that someday soon they will find a cure for all cancers.
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Congrats Ashla. Port to Pathology? I'm pretty sure mine didn't go to pathology. When he pulled the tube out, he showed it to me but that's about it.
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Congrats Ashla!!! Hadn't thought about naming mine. ;-)
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Pumpkin my power port! I really wanted to keep that and I don't know why.
Arlene , moon says they check the port for bacterial contamination because of the danger infection poses to the heart. I guess everywhere if it gets into the bloodstream.0 -
Asla- we do that when we pull the dialysis catheters out too. Actually, we cut the tip of the catheter that was nearest the heart off and send to pathology. Maybe they will send it back after their done?? Lol! I will name mine as well.....
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Congrats Ashla! That's cause for celebration!!
Was it Leigh that asked about both breasts? My left breast is the one with the ginormous tumor and how I was diagnosed, but on MRI they saw something (5 mm maybe?) in my right breast too. They decided not to biopsy it since I was getting chemo anyway. It completely disappeared on my repeat MRI that checked for "shrinkage" (woohoo!) so I assume it was probably BC. I am not sure how rare it is to have it in both breasts, but I had already decided I am having a BMX when the time comes anyway, so I haven't given it much thought.
I am so thankful for all of you ladies. I love reading all of your posts (love the pics and funnies too!).
I saw my MO today at my chemo appt and they are still very concerned about the rectal/colon bleeding that hasn't let up. My blood counts are dropping. I am getting a second opinion sometime this week. Not sure what is going on. On top of that, my port incision has never healed and has a perfectly round hole in it so I have to see the surgeon (?) guy who put it in and they said possibly have it replaced? Uggggh. I just couldn't possibly be a plain old cancer patient and just go through chemo with no issues. Lol.
Love you girls!0 -
Nicky - Did you have neulasta? Also, I have read that tykerb can cause GI troubles, could that be a potential issue?
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Oh Nicky u'r have some goofy problems, OK this happens with ports sometimes--but the bleeding just see someone and find out what's going on.
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I have not had neulasta - I am not sure if my white counts have lowered, but i don't think so. I am having every other Tykerb side effect LOL, so I wouldn't be surprised. But it is a miracle drug, in my humble opinion, and my tumor is shrinking, so I am willing to put up with just about anything! I am only 2 points away from a blood transfusion (which I don't really want) so I'm praying for some answers soon.
Thanks for your prayers in advance! I'll keep you posted.0 -
Nicky I'm glad this is working for u--it's good news and i hope all thes other things work themselves out.
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Nicky, hope they figure it out soon. I had to get two transfusions during chemo. Didn't like it, but I actually felt so much better after, its worth it if you need to have it. Much love.
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Nicky,
I had a horrible time healing during chemo. Perhaps the bleeding can be attributed to that? I hope it's something they can address soon. How horrible.
My aunt had blood transfusions with chemo (lung cancer) and she always felt so much better afterward...color came back to her cheeks, energy. (well, more than going in)
I hope you get some answers soon!
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DELICATE TOPIC AHEAD
Ok ladies. As some of you know I had an Ooph after BC tx because my periods came back heavy, and there is no way to determine if the Tamoxifen is beating my natural estrogen to any lingering cancer cells. So the ovaries were evicted and Menopause moved in.
Menopause is a fairly good tenant, except a few nagging annoyances. Painful sex is probably one of the worst.
Yes I've read about the gels, the use it or lose it, blah blah blah. None of that worked for me. In fact, the use it or lose it (doing it more often) made things much worse.
Saw my Onc yesterday and asked him about it.
There is a trial right now of women who have endured early menopause because of cancer tx, can't take the estrogen creams or supplements etc, and are having painful sex.
He asked me if I wanted to be in the trial, or if I'd just like to take the tx.
I chose the latter. I'm over cancer stuff. Besides, my luck I'd get the placebo. So I can't even give you more info on the trial..but am sure you can find it on-line.
So the trial uses DHEA CREAM once a day vaginally. He said every indication so far seems to show this is a viable tx with good success.
The only catch is the cream is made by one company and requires a prescription. In fact, I can't just order it online with a script. He has to fill out a form and send it to the company...who then contacts me for information and to determine what insurance may or may not cover, and THEN they mail it to me once a month.
Without insurance it is $28 a month.
Once they contact me, and I get my first shipment, I will post pics (of the cream! get your minds out of the gutter....lol) and details!
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Nicky I feel so bad for you. I thought for sure you had hemroids like I do. They hurt and bleed like crazy (even more due to this last chemo) but are not super serious. I am sending you lots of prayers.
Ashla- I am so excited for you!
Tonlee- I am glad that you brought this up. This topic has been on my mind. And even though I am getting surgery soon , so it will be some time before this is a problem, I do want our lives to feel normal-ish again next year:)0 -
Tonlee and Jennifer-
Great topic, been on my mind lately as well, cant wait to hear about your results. I will look for the trial and maybe also get the same choice of going ahead and use if they alllow. I my last big treatment next week.
I am trying to decide if I should do the ooph or hysterectomy. Do either if you mind sharing your opinion?
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Swim,
If your periods stay gone, then you likely won't need either. Chemically shutting down the ovaries, or being in chemopause, is generally the same as having the ovaries removed. I was told my periods wouldn't come back. Pffft. When they did, I wasn't certain the Tamox was working for me. (Some studies show a 50% failure rate.) And since we can't test to see if Tamox works for us, the only way to know if it isn't is for the cancer to return and be estrogen positive. Ugh.
In my mind I'd already whacked off a boob on the chance cancer might return to it. Taken poison, endured heart damage. It was a no brainer to have an Ooph to add to the arsenal I was compiling against it.
I was going to do a hysterectomy, but when I researched all the structural problems and long term complications associated with removing the uterus (bladder prolapses, slings, etc), then talked with women in my family who had hysterectomies (some decades ago), I decided to keep the uterus. My OB agreed that an Ooph was best for me because I am active and it only requires about 2 weeks down time. Plus, without ovaries and therefore ovulation, all the issues I had with my uterus (fibroids, heavy periods, etc) were resolved. It's orphaned now but still keeping things where they're supposed to be in the lower abdomen region..
I get a vaginal US every year when I get a pap smear to monitor it while on Tamoxifen though.
This is a personal decision, and unless your periods come back a lot of docs won't even consider doing an Ooph or Hysterectomy.
I tend to believe if it ain't broke don't fix it. lol
Hope that helps.
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tonlee keep us posted...that is a very very real issue with most of us. Would you say you are drier since being put into surgical meno then when you were just on tamox? are the SE's worse with surgical?
on this topic...when do they use lupron shots? my friend (young pre-meno) is on tamox but her periods have returned, not heavy but she still gets them every 4-6wks. MO is telling her just to stay on tamox. But i thought if thishappens they either shut you down chemically or surgically. thoughts?
i am 8 days post-op and honestly not feeling much better. These expanders are horrific, i feel like someone has taken a huge rubber band and strapped 2 lead bricks on each side. Please tell me this gets better, i think the nurse is lying to me...first she said the first week was the worst and now she is saying the first 2 are tough. I am having such a tough time. I was so worried about the damn lat flap but that has been the least of my worries, just a tight feeling. its the front that is unbearable. I feel like ripping these things off my chest
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Rozem Luprin seems to be used on women that are on one of the AIs but haven't gone into menopause yet. There are some women out there that can't take Tamoxifen for medical reasons like blood clots etc. Luprin with an AI is an option. The AIs won't work if you are pre-menopausal.
I might have opted for that if my period came back. My mom has had blood clots. Even when I was on the pill back in my 20's I was on one that was lower dose and didn't cause blood clots because of my mom.
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Thanks for the info it does help! My MO recommended the ooph and wanted to me to do before end of year but i am going to wait until spring, cant do yet another surgery. i have second part of reconstruction in December. I just figured why not go ahead and do the hysterectomy but looks like I need to do more research on the issues. Probably should find an OB to discuss this with, fired mine when I had to put my foot down and said I wasn't leaving h office without a diagnostic mammogram when I felt lump that started this journey.
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TonLee: thanks for bringing up the topic. My breast surgery isn't planned until February (I'm doing neo-adjuvent chemo right now till end of January) but at my last oncologist visit he brought up the idea of having an oopherectomy, too. He doesn't want any chances of reoccurence. I have been thinking that I wouldn't mind having the ooph but I have no idea what the procedure is like - is it every invasive? I didn't want nor did my dr recommend a full hysterectomy.
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swimmom and foreverchanged why did your MO's suggest an ooph? did your periods come back? i am so confused as to why some suggest and others do not recommend it
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I have 1tx left of treatment so still in chemo pause. But she stated my age 39 and her2+ along with what she has seen in her practice with these she would recommend the ooph. Plus I think she has gotten to know me and that I would always being worrying that I hadn't done everything I could to lower my risk.
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Rozem I know my friend that is on Luprin (2nd diagnosis both times no chemo) is only a year younger than me. It might have something to do with the fact she is so close to menopause but she also has other health issues. Anesthesia can be dangerous for her because she has bad apnia. I also know my onc is not a big fan of removing healthy body parts.
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Roze,
The reason some Oncs recommend an Ooph or Lupron is because there is no way to tell if Tamoxifen is working for you. It's about reducing risk. I was over 95% ER+. I think that and age probably has a lot to do with why it was recommended to me.
For instance, while the research shows a woman who has an Ooph/Lupron (for women whose periods have returned!) has lower instances of recurrence and BC death than women who just take Tamoxifen, there are other things you must consider. For instance, my research showed that women who have an Ooph before 45 tend to die of other causes (heart, etc) at a little higher percentage rate than women on Tamoxifen who go into menopause naturally. They also tend to have other issues, like osteop.
If I were in my 30's, I think I may have done the Lupron. That way I could control when I wanted the estrogen turned back on, if I ever wanted it back on. Does that make sense? Maybe ten years out, with no recurrence, I might want to go into menopause naturally. But I just hit my 40's and figured, meh....
There are pros and cons to an Ooph. I highly recommend you research all the potential problems with hysterectomy. If you don't have issues with your uterus, there may not be a reason to go through that whole surgery. I've seen it on youtube....no wonder it takes 6 weeks to recover.
My surgery lasted about 45 minutes. It didn't use the DiVinci machine (that creeps me out)...I went under the scalpel of a very good surgeon. Three small incisions. One over each ovary, one in the belly button for the camera. I had swelling for a couple months, but I was back to working out before 2 weeks passed.
Down time is not our friend. If I end up dying from this, or heck from anything else, in the near future, I don't want any significant portion of my living time to be recovering from surgery. Every minute counts. AT least it does to me!
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Swim, your periods may not come back.
If they don't, then it is all good
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Someone asked about the sex...lol.
TMI ALERT
Three things.
1. Yes I am more dry. In fact, I went from someone who had a lot of moisture, especially during THAT time, to nothing. Nadda. Even after two orgasms, which used to really make things messy...now it's like nothing happened!
2. I've always been um, petite down there. Meaning, the OB used the little speculums. But elasticity carried me through when it came to intimacy....that is gone. It just doesn't stretch the way it should, and there isn't enough room for a whole house visit, if you know what I mean. Or any fun positions! (WHat? Told you TMI)
3. For whatever reason, I get hundreds of tiny "tears" (confirmed by the OB) during intercourse, even with super lube. It takes them about 3 days to heal up. Any kind of intercourse during that time is so painful it just doesn't work. I've tried to grin and bear it, but my husband can tell when I flinch. And 3 days between sex is too long. At least for us.
SO now you know the details. lol I will report about the DHEA cream. I hope it's not much and I can just do it at night....but whatever, at this point I'll take it!
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I'll add my experience since we are on the subject - went into chemopause, no periods for 21 months, nearly undetectable estrogen on tamoxifen. Thought I was post-meno so switched me to letrozole (AI). Within a couple weeks my hourly hot flashes got a lot better. Very suspicious. Checked estrogen and it was over 200. Immediately back on tamoxifen and shortly thereafter estrogen back down to undetectable. Moral of the story - For women who have chemotherapy induced amenorrhea (chemopause) use of an AI like letrozole can actually stimulate the ovaries to regain their function and start producing estrogen again. The clue for me was the change in hot flashes. Shortly after going back on the tamoxifen my hot flashes went back to 'normal'. AIs don't work if your ovaries are making estrogen. So thankful that we caught it quick!
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These are huge decisions to have to make so I don't envy any of u--it takes time and thought for any surgery. I wish u all to make the rght decision for u---I had a full hysterectome and 3 little holes and felt good in no time, just like my gall bladder which was another easy surgery.
I did have the hyst. first this there was cancer involved, but I just wanted everything out so it would beout of my body, then later the boobs--didn't think of that at the time. LOL So I was iven no choices so I just did everything, but if I did have a choice I know I would do everythin anyway. I know I don't think like others but I've always felt these were breeding grounds for cancer if cancer invades u'r body. Of course no stats just what I've seen over the years--lots of years.
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