TRIPLE POSITIVE GROUP
Comments
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dragonfly - hi! The explanation sounds plausible and the bright side is that it only is happening when you sleep and it goes away. Hopefully it will go away completely and not get worse. The numbness on the bottoms of my feet is definitely improving, but slowly. Did you try the keeping your wrists straight remedy? I had one morning when I woke up and the ring and pinky finger on my left hand were numb for a while after I woke up. That did not repeat though, but I did get nervous because that ring finger is the one with the nastiness under my nail (thanks, Taxotere!) I do have a tendency to sleep on my side, fetal position, with my wrists bent though. How are you doing otherwise? I go for H only tomorrow.
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SpecialK Yes, I tried the wrist/hand wraps to keep from contracting my hands in my sleep but it still happens-the MO thinks it's because I naturally sleep on my side and the weight on my arm is enough to aggravate the already damaged nerves. I guess I'm not surprised when I think about it-the Tax went after my fingernails during chemo but never affected my toenails so it stands to reason that the nerves in that area are more affected now...
I'm doing well otherwise-getting H right now-hard to believe this is #10! Wow, although sometimes it seems like this is a never-ending process, it also seems like it is flying now. I'm 2 weeks past Rads as well:) The fatigue has hit a new plateau since Rads but is very manageable. I'm just looking forward to eventually not being so tired all the time. Should be starting Tamoxifen next week when my regular MO returns from vacation. And how are you doing overall?
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dragonfly - sorry for the delay - went to Target with the DD for a new comforter for her bed. We have been re-doing her room. I have been moving furniture and painting, loading things into her truck - all of it is exhausting!!! But I'm doing it! I do tire easily and it usually sneaks up on me. I am fine one minute and then I feel like I need to lay down. I am also sometimes overwhelmed by thirst! I still have one very bad fingernail - it is bad enough that I am going to have them look at it tomorrow - the fingertip is reddened and the joint hurts, under the nail is greenish. Pinky toenail that fell off has grown back and is fine. I have been on Femara for several weeks - that is going OK. I have a little stiffness in my ankles right when I get out of bed, then as I walk around it goes away and I am fine. You have to be getting excited for your trip - I am excited for you!
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I just found this group. Has there been any discussion about hysterectomies with or without removal of ovaries? I'm scheduled to have a total hysterectomy in about 3 weeks. Going to see doctor for preop next week, but in the meantime I'm really wondering what the point is of having a hysterectomy if they don't remove my ovaries!? I was told by my gynecologist and oncologist that I should have the hysterectomy after my periods came back 2 years post chemo. They told me that my cancer was caused by estrogen and fed by estrogen. With this being the case, wouldn't leaving my ovaries leave me at a great risk for reoccurrence since they will still be producing estrogen? I don't want to reinvent the wheel; if anyone is aware of another thread that has addressed this, I would really appreciate the heads-up!
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Hi ladies! I am 8 wks PFC and had my port remove as soon as I finish chemo. It was really unconfortable. I still getting Herceptin. Since I have to drawn blood for my labs i get stick once, they use the same iv for labs and Herceptin.
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I already had Herceptin in 2009 for 1 yr. And at that time I didn't have a port. I got a port when I was going to get TC because if those leak, it will burn the skin or vein.
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I didn't get the port and I'm glad I weighed the pros and cons. My veins have held up really well and the Oncologist is the one who places the IV. No leaks so far
Tennisgirl Are you having the hyst because of bleeding? If you have a full hyst you open up a whole new set of hormone related issues. Keeping the ovaries can save you from bone and other hormone problems.
I've been bleeding for 3wks, had a D&C 2wks ago and I'm ovulating. Yes, I said ovulating. I'm on round 4 of chemo and Onc thought I was in chemopause. US shows ovulation, so even chemo can't shut these puppies down. No one seems worried about the estrogen, but me. I guess I'll just have to have faith that the specialist know what their doing. It's so hard to put your life in someone else's hand. I feel like I question everything these days.
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In my case I'm so glad to have my port. I had node removed in both arms, LE in the arm with 10 nodes. The 4 node side is at risk so I don't want anyone sticking me there. Too bad because I have good veins although I do have good veins in my feet too. The reason why they don't like sticking your feet is there is a higher risk of infection. I have no idea what I will do for blood draws once the port comes out. Seems no one wants to access your foot.
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Thank you for the congratulations on the herceptin working for me ladies, but it is a bit premature. I have only had one treatment and am not due to have the 2nd one until next Wed. At that time they are going to have to adjust my intervals because I will be out of town for #3 if they stick to three week intervals. I think they are going to have to do quite a bit of adjusting since I plan on being gone for over two weeks. I don't know when we will find out if it is working...and then the question will be IF things do look better, is it from the herceptin or the Xeloda?
I have had my port for 12 years and it is just a part of me now....although I have been with this onco for over 13 yrs now, I resisted it the lst year, didn't want physical evidence and I have one that looks like a door bell, but let me tell you , I LOVE my port as it makes life much easier.
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lago - I forgot that you had nodes removed on both sides - makes sense to keep the port!
How are your nails now - ?
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Nails are growing out but thumbs & pinkies are the only ones NOT lifted on my fingers. Big toe nails still lifted but not like this winter. It's going to take a year I bet. Nail polish hides a lot. I never used to wear it but now I have too or people start asking questions.
It's funny but I posted some of my photos from vacation on facebook. There are many folks that don't know what's going on yet tell me they love my hair. One friend that I grew up with said "it should be illegal for you to look that good!" She had no idea about this past year. Nice to get those kind of compliments from people who don't know. My mom even said I look better than last year. Guess I should keep the hair short. Maybe it's the new larger boobie prizes?
Thanks for asking Omaz. OK back to applying for jobs.
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oandtolivo - Thank you for your reply. It is because I started having periods again that I am having the hysterectomy. The doctors had assumed that my chemopause had transitioned to real menopause, but it didn't. In addition to the bleeding, they said that they are concerned about my production of estrogen, since that's what caused my cancer. They made it sound like the hysterectomy would resolve that. I just don't understand (but will certainly ask the doctor when I see him next week) how the hysterectomy really benefits me, when my ovaries will still be working to produce estrogen? I don't necessarily want them removed if they don't need to be, but I don't want to get a hysterectomy either just to keep from having periods if I'm still going to be a a higher risk because of the estrogen production. I hope I'm making sense!? 0
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Tennisgirl I understand your concern and I've had many of the same questions. I'm 42 so I'm no where near menopause except that chemo has temporarily stopped my periods. When I recently went for my annual Gyn exam, I asked the Dr. wouldn't it be better to just remove the ovaries since I'm highly ER+/PR+ (90%+)? She explained that it's just not that straightforward and that the ovaries protect both the heart and bones. In fact, she said if they were removed she would be less concerned about the bones because the available treatments for potential bone loss are pretty good but she would be more concerned about my heart. She essentially said it's a risk/benefit calculation and keeping the ovaries is recommended unless there is a compelling reason to remove them. She reassured me that Tamoxifen will do it's job. It certainly is complicated...0
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Hi everyone:
Almost finished with RADS....this week is the 5 days of boost to the scar which they say is a high risk area for reoccurence. I haven't had many problems at all with rads.
I had another MUGA and my #'s are still dropping. I started at 77.9, then 66.5 and now at 60.6 so not susre what that means but it doesn't sound good and my heart palps come and go. I've only had 4 Herceptin treatments so really afraid that they will have to stop the infusions. DARN! I'll see what the oncologist says on Monday when I go for another Herceptin. Cardiologist is doing all kinds of tests to determine the cause of the palps and told me that they are not from the Herceptin but who really knows. I have a treadmill stress test tomorrow and numerous monitors.
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Arlene - I went from 73 to 55-60 to 60 and my last one was 55. I just finished my year of herceptin. Some women go on blood pressure medicine (I can't remembe which one) during herceptin and that seems to help. My surgeon said that 55 is fine unless you want to be an Olympic athlete so at 60 you are doing alright!0
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Thanks Omaz. Guess my concern is that with only 4 txs down, if it keeps dropping at this rate, I won't be able to finish. Hoping it settles down. I understand that 50 is ok but below that they stop Herceptin. I'm already on blood pressure medicine.....I'll be asking the doctors next week.
Thanks for responding.
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ArleneA - Hi! Glad to see you, you have been missing! Sorry about your dropping numbers, I hope you can continue on the Herceptin. Are you all moved yet?
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Arlene my numbers also dropped a little this time around, i only have 3 more to go, the onc just upped the echo time to every two months instead of three just to keep a close eye on it. Hopefully you will stay at that number for a long time and get to the end. And for some reason I got sick from my last herceptin, nausea,D, and major (almost migraine like) headache. Except for the headache I usually just sail right through.
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Hi SpecialK: Hubby is all moved but I'm stayiing in Vegas finishing up RADS - yay last one tomorrow and some other tests and will head East around the 14th...still awaiting the birth of my first grandbaby (a girl). Next Herceptin is Monday and from then on out, I'll have them in Melbourne, Fl. Had a nasty stress test this morning and hoping that may reveal a clue on the heart palps.
Thanks Carberry. I sure hope the # sticks. I've been lucky with no side effects from Herceptin at all. Hooray for only 3 more H for you.
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ArleneA - Yay for the end of rads for you - I know others have said it was tiring at the end. Just returned from Herceptin #10 a few minutes ago - I actually had a good time. A very nice group of talkative ladies in my little corner. They all were very interested in my "underhair" so of course, I did a "show and tell" with them. I hope they can nail down your cardiac issue with this stress test and that you can continue on with treatment without being nervous about it. Be sure to tell us about the grandbaby when she comes! So exciting!
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Arlene you look so young in your avatar...How in the world are you old enough to have a grandchild!? Nothing like a brand new baby to bring happiness and joy to a family. Congrats 0
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carberry - I was thinking the same thing!
Arlene - Congrats on finishing RADS!!!
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Hi Femara ladies,
We have here extremely high temperatures now, so we spent a lot of time at swimming pools.
After swimming a much I was really tired, but next morning and all over the day no bone/joint pains. Couldn't believe, but it's true! Unfortunately so as I as you too, we cannot spent our days swimming!
Best wishes!
Usha
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Sorry I posted to a wrong site!
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Just had my power port removed along with a PBM. I have to say I feel quite relieved in having it done.
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Thanks Carberry and OMAZ. Last off 33 RADS complete so now just HOPEFULLY to finish Herceptin and 5 years of Arimidez. Amazing how attached you get to your techs, isn't it?
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ArleneA - Yay!
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Hope all my triple + sister doing well. I finished my chemo AC+taxol in March and got my first blood test results postchemo back last week. My hemoglobin is back up, although still a little lower than the low limit but much better than at chemo. but my white cell count and neutrophilis are still lower than the low limit, whereas they were fine during chemo because I took neupogen (spell?) shots 10 times after each chemo. I read somewhere that taking neupogen shot would prohibit the production of white cell by your own body. Just wondering how long it takes for white cell getting back to normal. I am glad I have asked for the blood test now so I need to be caucious about my environment. Good luck to all sister. Thanks.
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Arlene - congrats on finishing rads!!!
IsThisforReal - I got my port removed yesterday too!! What's a PBM?
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meglove I had a blood test done almost 2 weeks ago because of a rash. Chemo ended on 1/18. My doctor said my white counts were a little low (as expected because of chemo). I did Nuelasta. Oh and did I mention I got a cold last Sunday. I hardly ever got them in the past and it's usually because I'm run down, stressed, not eating right etc. I'm sure I caught it from someone on the plane. We just need to be a bit careful for a while. I have no idea how long but I'm getting the flu shot again this year for sure.
PBM = prophylactic bilateral mastectomy
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