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i have been reading several of these posts today. I have my 6th and last round of Chemo this friday. TCH! i have become more short of breath since the 5th round. i am hoping it isn't the chemo causing Heart Failure. Ironically, i am a cardiac nurse as well. I know my hgb has dropped in the 9-10 range. Started at 13. So i am contributing the shortness of breath to a low HGB. I have no swelling, no fluid in the lungs, etc. In addition, my potassium is on the lower side of normal which makes me believe my magnesium is as well. Having all of this checked on Friday before my treatment. The other thing that bothers me is one of my eyes waters alot and a runny nose. Anyone else experience that on this chemo regimine? i will be so glad after friday. I also have muscle aches in my legs. They just get so stiff. I don't know what is chemo and what is due to the heat. I have been working full time through all of this though. Still have 33 rounds of radiation to go and then of course herceptin for a year. 6 mos mammogram was CLEAR!!! i am ready for my hair to grow back. I still have eyelashes and brows. I am hoping i can keep them. Cancer has done enough to my body the least is to let me have my brows and lashes!
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cindy - have you had any echos or MUGA? Your lowered Hgb could certainly cause the SOB, and by my 5th TCH I had the achy leg muscles (no oxygenation of the muscles because of the low Hgb) and fatigue also. The chemo is not the culprit in heart failure, it is the Herceptin. The watering eyes is a Taxotere SE, and the runny nose a Herceptin SE - both very common. The tears usually subside by about 6 weeks after your last Taxotere, but the runny nose may stay all the way through the last Herceptin. I did not have much bone/joint pain on TCH but my first Hercepin alone was run in 30 minutes and I had terrible hip/back/leg pain. I read on this site to slow it down to 90 minutes, did that and had no further problems. Yay for the clear mammo! Glad you still have brows and lashes but sadly, they sometimes fall out after chemo is done. Hang in there, one more to go!
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Cindy,
Hang in there!! You are almost done!! WOO HOO!!
The symptoms you describe sound exactly like what most of us experienced here in one form or another. Especially the shortness of breath and just being tired. Honestly I don't think you can tell what's chemo and what's heart damage, but take comfort in the fact that most women DO NOT experience long term heart damage. I'm not a doc, but it sounds like chemo SE to me. After 5 mine were significantly worse than the previous 4.
Hope that helps!
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Cindy, My left eye teared for 7 weeks PFC. It teared so much it looked like I was crying. My eye doctor prescribed eye drops (Fluorometholone),after using the drops for one week the tearing finally stopped. I am now 8 weeks PFC and just this past weekend my eyebrows and eyelashes started to fall out,so far they are not completely gone but very very sparse...My hair does not seem to be growing very much. I understand that herceptin does slow down the regrowth. I will finish radiation on thursday and then herceptin until January 2013. This is a loooong journey.. Sending best wishes. Hugs Eileen
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FYI for those AI newbies like me...
"
The following foods (or major bioactive components) have been found to inhibit aromatase or to enhance the effectiveness of aromatase inhibitors and are recommended during treatment:
Foods, supplements and medications to avoid while taking aromatase inhibitors
The following have been found to increase aromatase or reduce the effectiveness of aromatase inhibitors and should be limited or avoided during treatment:
- Alcohol
- Corn oil
- Genistein
- Hormone replacement therapy, including bioidentical or natural hormones
- I3C
- Safflower oil
- Soybean oil
- Soybean paste
- Soy protein isolate
- Soybeans
- Sunflower oil
- Tofu
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Eileen and Cindy.... My final chemo was Feb 21 and I lost the last of my hair and my eyelashes in the month post chemo. My hair is barely an inch long 5 mos PFC. It is growing very slowly , sticks straight up and has this ash blond blush on the ends so it looks almost nice. It is sooo soft and silky it feels like my soft coated wheaten's hair. I'm thinking when I get around to cutting it in the distant future it should probably be placed in a toxic waste dump.
Finally had to shave my legs last month...4 months PFC!
THe best part though was my skin PFC......beautiful baby soft skin! Eyelashes are back but also very soft....0 -
thanks for the reply's - i will have another echo after friday's chemo. I asked the dr. about doing an echo after treatment number 4 and she said it wasn't needed til i have the 6th dose and then we will do it every 3 months due to the herceptin. At number 4 i really wasn't having any major issues with Shortness of breath. Just tired. The dr. did tell me at number 4 - this is an accumulative effect. I see what she means. my hair is starting to grow back a bit as well. I know i could lose it all after number 6. It is baby soft and baby fine. i guess i am just a big baby---lol. i did have alot more joint aches after my first treatment. My understanding is that was due to the loading dose of Taxotere and/or the Herceptin. I couldn't hardly walk. they subsided after a couple days. Now i just get aches and pains walking up the stairs at home. it doesn't help that my job requires me to wear lead aprons occasionally - they weigh about 10-15 lbs. after a day in lead it really makes my legs hurt!!! i just hope this angry beast never returns. It is a cruel thing that is for sure!!
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Yep Cindy....all the 'normal' SEs from the TCH. I'm over a year out from chemo and still have a bit of drippy nose and occasional "taxotear" eyes. My onco says it takes a long time for the Taxotere to clear your system. It will get better. Oh, how I remember those HEAVY achy legs. As everyone has stated, make sure you get your routine MUGAs or echos. VERY rare but some of us here did experience heart problems from the Herceptin but the majority of the time, the heart heals.
Funny about the toxic hair Ashla. Even though I used the cold caps and kept most of my hair, I was always told that you needed to keep it trimmed because the chemo comes out....I still have some very dry ends.
You are almost done and found a great resource here....there are some really knowledgeable and compassionate ladies here. We've been where you are and it does get better.
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Cindy - When you finish your herceptin, your hair growth will take off.
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Cindy, I did TCH. I have the tears,the runny nose, and the shortness of breath. BUT that SOB, is getting better as my hgc comes up. I needed two transfusions of two units during my chemo. my hgc was down to 7.6 for the first transfusion, and just below 8 for the second. My onc wanted to wait after my last tx to hope it would recover without a transfusion and it did. I am 7 weeks PFC, and it came up to 9.8. It should keep going up. Yay. But that explained both the SOB and my tiredness. So don't panic, there is more than one explaination for that stuff.
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Hi Ladies!!! Wow!!!! So much to catch up on!!! I was on vacation for a week in the Dominican Republic and what a fabulous time we had . It was to celebrate my friend and I completing all of our surgery, chemo etc... It was originally going to be a cruise and we were going to call it our "boob-voyage" but decided to do an all-inclusive instead. Besides our sons informed us that there was no-way that they were going to wear a t-shirt that had the word "boob" on it!! lol!! It was a much-needed vacation for us, for all that we had been through the last year... and only you all can understand that!!!No cliff-diving was done tonlee!!! but some of us did try the zip-lining!!! I have never drank so many sugary alcoholic concoctions in my life. I am detoxing now. lol!!! and back to the treadmill.
Anyways.....Lots of discussions I have to catch up on, but I just wanted to say hello to you all and welcome to any new ladies here.
ashla-- thanks for the food tips on the Aromatase inhibitors
Also never had any scans.
My MO told me any tumor under 1cm with 0 nodes, scans aren't done unless you have symptoms ie... bone pain... abdominal pain..etc.. Probably the Insurance Co. won't cover it unless that criteria is met. Although, after we found out that one of my tests showed that I was her2++, he said I could have a PET Scan if I wanted, but I declined at that time. Too much to take in... I hope nothing is/was brewing..... Read a few discussions on Herceptin and shortness of breath and although I never had those symptoms during treatment, I did start noticing a couple of weeks after my last Herceptin that I had dyspnea at times. It is weird... some days I can run on the treadmill and climb stairs like a champ... and then there are days that I am out of breath.... WTF?... I hope my "ticker" is okay...I have yet to have my last echo after finishing Herceptin, so maybe my EF is low? I was contributing to the heat, humidity and pollen, but now you all got me thinking.... I have my 3 month visit next month, so will discuss with him then.
Did I read somewhere that Arimidex can cause heart problems or was that a dream?
Always something right?
Cindy--yep... had those Taxotears too... they went away about 3 weeks after last treatment and Herceptin gave me a runny nose also, but it was better after the chemo-part was done. Congratulations!!! your almost done!!!!
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I also never had any scans, except for a dexa, and that was ordered by my pcp before I was Dx, it was for my knee pain and bad back.
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I still have the teary eyes more than normal a year out from chemo. Not nearly as bad though.
My crazy dog that we adopted at the end of May led me to help the person that was fostering him. Her sister was recently diagnosed with BC, but hadn't wanted to talk about any part of it with the family. I told her to be patient and just keep the line of communication going. She emailed me a few weeks ago that she had finally opened up to them and has inflammatory breast cancer, which is the same thing another relative had. They have her on a pretty agressive protocol, I believe. I directed her to this site and gave her the link to some threads. I think I was meant to adopt this loon of a dog who eats mulch and left all my plants in the ground but uprooted the ones in the flower pots.
My decision on my protocol choice was based on a LOT of research. Pretty much round the clock for six weeks while being diagnosed. I interviewed three breast surgeons and four oncologists before deciding on the ones I thought were both outstanding and would allow me to be part of the decision-making process. I question everything, and now they just expect it and come prepared with as much research as they have. It is not that I doubt their knowledge or have a lack of trust, I just want to make sure I understand it the same way they do.
On the sexuality front....the huge envelope I was given by three different doctors from the American Cancer Society had a whole section on expectations. There was also one for the spouse that had some info in it. I am kind of like specialK though. I was not in menopause at the time, but at 55, it was looming and I pretty much knew what to expect from talking with friends who had been through it. The hot flashes are way worse though.
I actually feel more feminine now. I know it is kind of crazy, but I was losing weight when disgnosed, and continued until I lost 30 pounds. My foobs are now perky and they feel soft. My clothes look good, so I have been buying some tops that show the twins off more. While this is not the way I would have chosen to accomplish my new figure, it is one of the good side effects. I've kept it off for 18 months and am trying not to fall back into bad habits (too many of them at least.)
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Hey Bucky - glad you had fun on your much deserved trip! I love the DR - most amazing beaches. Had to settle for Jersey this summer, but hope to go back to punta cana again soon.
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Largo...I'm not sure where this statement is coming from...
I don't have any issue with people not choosing chemo. That's their choice. I do have issue when people insinuate that you will get permanent damage to your heart etc. Yes it does happen but not to everyone. Given the choice between congestive heart disease and taking pills the rest of my life or not taking Herceptin/chemo and getting cancer back with a much shorter life I took the former. Granted I didn't have heart issue... at least I don't seem to have any.
I don't know of anyone here who insinuated you will have permanent heart damage from chemo. Until recent, I wasn't for sure if chemo cause heart damage. From what my oncologist said, it was unlikely I would have heart issues with herceptin alone. It wasn't the chemo, but taking them together that would put me at risk for possible heart issues. I was just saying that with the heart issues from herceptin, I'm glad I only did herceptin. I could have been in a worse predictant had I done both. I was referring to my experience only. I was not making a broad statement that chemo/herceptin causes heart damage. As said in previous post, I just happened to be one of the unfortunate ones to have side effects and it's the side effects I've been addressing.
Nance on the other hand is wrestling with a lot right now. I'm glad she is doing the mastectomy. It's a big decision to or not to do treatment or partial treatment. Whatever she decides, I hope she finds support among women on the triple positive threads. No matter our differences or treatment options what we all need is support, even if we disagree.
My heart scare has put things in perspective for me. I've been more concerned about my heart than cancer recurrence. The idea of losing my heart is scary. Like my oncologist recently said...the only thing I'm concerned about right now is your heart.
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A.A. Thanks for the info.
Geewhiz, so true!0 -
Hi fluffqueen01,
We adopted a shelter dog in the past year, and have been enjoying his quirks too!
I'm glad you are having a much easier experience with it all. I wonder if the current treatments are a lot easier on the body than doing Cytoxan, Adriamycin, and 5-FU (or epirubicin instead of the Adriamycin) which were the common treatments when I did chemo. It didn't cause neuropathies but I did have projectile vomiting for hours at a time, using Zofran and anti-anxiety medications.
Access for research is a snap now compared to 2002, for learning about cancer and about the various physicians and treatment facilities. Forums like this were pretty nonexistent or in their early stages of development back then.
Even if the doctors do have to hide behind giving out an envelope of handout materials, it is better than not sharing any information about it with the patient in advance at all. I'm not sure why the cancer center would have an oncology nurse giving the presentation to the newbies at my cancer center who didn't have any knowledge about the common sexual issues involved with treatment, or why she never read anything like the materials in your envelope, but I guess they don't tend to hire someone who has had personal experience with breast cancer.
I still have both breasts, but there is no pleasurable sensation in them. The lumpectomy breast unfortunately was fried by rads and has been hardening up like a rock due to radiation necrosis, and is very painful. The calculation of rads by the chief of the rads department was apparently not correct. It was done at a brand new rads facility in California.
One other difference is that treatments like chemo and tamoxifen accelerate aging, and most people sharing their impressions here are still under 5 years out from treatment.
A.A.
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Kayb,
It was Roseanne Rosanadanna.....the 'if it's not one thing, it's another'. YOu brought a big smile to my face. How I miss Gilda Radner. Feel the same way about Nora Ephron..
Do you remember this bit about stoppping smoking? As I look at it now...sounds like all of us during treatment!
Never mind!
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Now i just wish my employer would understand chemo and the side effects. It is amazing i work in the medical profession. i am a cardiac nurse and we have patients that have had long term heart problems from Chemo. Few but they do exist. My employer thinks that i can go at 110% all the time. I have taken only 11 days off work since dx. That was to have my lumpectomy - 3 surgeries to get clear margins. I also have taken the mondays after chemo off. I am thinking seriously about short term disability for a few weeks after the 6th round/ final chemo. this is how it works--if you are working then you are working at your full capacity. It doesn't matter if you are about to drop dead or what :-) All my co-workers have told me that they would have taken the time off along time ago. I will say though, working has made the time go by faster. suggestions????
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I wish I had been busier during my treatments but keeping up the pace of a cardiac nurse sounds tough for even those of us who got through this process relatively well. Amazing that you weren't given any accomodations by your employer. Another reminder that if we don't take care of and advocate for ourselves...no one will. By the very end of chemo I think it would have been extremely difficult to keep a full work schedule.
I had to see a cardiologist one week PFC because my preop ...I had my lumpectomy after chemo.... EKG was wonky. I asked him if it was okay for me to start an exercise program. He said my heart was fine but said that my entire body had been through so much in the past months that he said just give your body time to heal. Eat well. Rest well. Laugh. Relax. To take it easy for awhile0 -
I took my first anastrozole this morning. It's very weird. This is the first time in my life I've been prescribed a longterm medication. More coming. A new chapter.
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Molly Ivins too! It's the laughter. Let's all try some more laughter every day. Hard some days.
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kayb = Please let us know how it goes. I will be starting Anastrozole in August. I will be 74 yrs old in October. I make myself crazy with worry over the possible side effects . I was so worried about the chemo side effects that I almost refused chemo,however I was was very lucky-very minimal side effects,my last radiation is tomorrow ,I have had no side effects at all. I will continue Herceptin until January 2013. I know that they have to tell us about the possible side effects but they scare the h*ll out of me. Hope you have much success with Anastrozole and NO side effects. Regards Eileen
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AA,
Thank you for the explanation.
I can see why you were "referred" to a counselor. Aside from the physical stuff, the whole loss of gender must be a very difficult thing to endure and as individual as every woman. I am so sorry you feel this way. And I can "hear" your frustration. How mind boggling that they recommend a counselor, then tell you ..you don't don't qualify! Absurd.
I don't think the lack of discussion on the sex topic is malicious or even intentional. I tend to believe that medicine in general is male-centered. It's starting to change, but will take a life time or two for the paradigm shift. Until then we have to push and fight for things that seem like no-brainers. (At least this is MY experience.)
I lived in Alaska for three years....northwest about 40 minutes outside Fairbanks. I KNOW there isn't a lot to choose from up there. But if you are close to Anchorage? Anchorage, as I'm sure you know, is like any other city in the US....it's civilization. Could you find a therapist there?
Good luck to you.
t
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kayB: I've been on the Arimidex for almost a year now and no major issues-just the achy joints especially when sitting for a while. Goes away quickly.
Question??? I went for my port removal consult and the breast surgeon (I've never seen him before because I had everything done in Vegas) wants to do a Positron Emission Mammography (PEM) study/test on an annual basis....yikes more radiation.
Anyone heard of this test or see any value in it? Everything I'm reading about it is that is is done right after dx but he wants it done routinely...says it is MUCH better than the mammo/ultrasound.
Thanks for any information any of you have. Arlene
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Um, is anyone else's page all messed up?
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My page is messed up.
I am being treated at a Catholic hospital. After my UMX the nurse mentioned issues with sexuality. I was pretty foggy, but I think she told me they didn't discuss the issues but would make referrals for resources if the patient requested them.
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The blog is possessed. The wrong profile is coming up with our comments.
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Hi all. Am just passed treatment 4 of 6 (tax, carbo and herceptin). Have had naseau this time and had to take the compazine....ugh hate the way it makes me feel. Not taking it again! Have a ? for my dr and welcome comments from y'all....I have been taken off of herceptin because it is affecting my heart function. So...if you can't take herceptin w/out the chemo and I'm taking herceptin because I'm her2+ and have been taken off of it then why am I still taking chemo? Why not just onto radiation?
Dx 3/8/2012, IDC, 1cm, Stage I, 0/6 nodes, ER+/PR+, HER2+
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Welcome psm...lets see who this blog says that I am but I'm ArleneA. Several of us here had heart impact from the Herceptin. Sorry you've had to deal with it too. I only had 4 chemos and 2 Herceptins with chemo and then another 8 after completing chemo (I only had 4 chemos because my onco felt for my stage that 4 was sufficient even though standard protocol is 6). The chemo is important and goes on a seek and kill mission for any cancer cells that might have escaped. Hoping you can finish all 6.
ArleneA
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http://www.youtube.com/watch?v=Z7gLJr03vNQ