TRIPLE POSITIVE GROUP
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Thank you all. I wore a fascinator purchased from Amazon of all places.
I have done big hats in the past but since diagnosis, simple is better for me. First time to wear pants at the Derby and it was the most rain ever at Derby. The track looked like a pool at times.
Last year, I was still taking Herceptin. I actually planned my 21 day chemo schedule around Derby so that DH would not miss it. He has gone since the 70s.
Last year I was exhausted. I was also determined to go and support Richard. He did not ask this of me. I wanted to do this to have "normal" part of our lives.
This year, I kept up with everyone and had no naps. I worked out daily except for Derby because I walk so much that day.
I know the picture is blurry. It is my only picture. I LOST MY PHONE!!! Dang it.
My point ... Keep you celebrations and do them however tired or downsized these celebrations may be. Because ... it will get better.
It was so much better this year.
And your year and celebrations will get better also.
Vicky
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Hapb, yes Elkader is in Iowa. I live about 60 miles away.
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tld, my rads were on the left side. I didn't need to hold my breath. I have a hard time finding my tattoos now....they just look like freckles which I have quite a few anyway. I did not burn. Just a little pink. I did talk to a lot of women tho who did burn. In most cases they had used creams before & during rads. I found very few people like me who used no cream at all. I did use cornstarch putting it on with a cotton puff when I felt hot or sticky.
As far as bras go, I needed something for quite a while to stop any rubbing. Regular bras were a no go. Ended up with a very cheap cotton sports type bra bought a couple of sizes too big from Walmart of all places. They run small anyway & I didn't want restriction....only protection. Wearing those I didn't feel uncomfortable in public as I would have without anything.
Try not to worry. I believe the worst part of rads is the pre-worrying!! Do schedule plenty of rest time until you know how you will react. My only real SE was fatigue. Hugs!!!
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Vicky you look great! It is always great to see pix. I am afraid I missed a couple? I promise I will post some pix soon. I am starting to get my hair back.
Thanks Lilyduff for chiming in. Hopefully I will see my MO tomorrow to discuss pathology results and possible radiation. I am also considering the prophylactic oophorectomy, do you mind sharing what went into that decision? My MO mentioned as something to discuss but I havent looked into it yet.
To those in detours, I hope you re-join the main highway soon. Suburbs: hope the infection is getting better. To KimCee: had to look up the mycoplasma thing, hope you are totally over it and getting used to the new boobs. I see you have been through a lot, first one side then the other. Best wishes to you.
Happy Monday everyone,
LaughingGull
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I'm through 2/6 chemo treatments right now (3rd is on Wed) and my ankles and feet keep swelling. My abdomen also swells but I can't be sure that's not just a result of things I eat. My weight is up about 4 or 5 lbs. I can't figure out why I'm swelling. My biggest concern is heart failure due to the herceptin, but I'm still running, though not at my pre-chemo intensity. The swelling happens about a week after my infusions, and then again the weekend before the next infusion. The week after swelling I chalk up to the steriods wearing off, but why am I swelling now, on day 19-20? Is it possible to have reduced LVEF but still be able to run?
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Hapa, i’m With you with number 3 of 6 this Wednesday. Agree, my biggest concern is the Herceptin. HapbB, thanks for the list of side effects. I have a bunch (!) such as runny nose, junky eyes and more. Something else to discuss at my next MO visit. I went to a beautiful wedding on Saturday and wore a froo-froo derby hat over my new wig. Our lives have indeed changed in 2018, thanks for being here for all of us, ladies.
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Swelling is very common with Taxotere, I would suspect it before the Herceptin, but as always - tell your oncologist about any side effects you are expriencing. I used these side effect charts from the American Cancer Society so that I could accurately record side effects and not rely on memory regarding when stuff happened. Runny nose, congestion are common Herceptin side effects, as are watering eyes from Taxotere. This is to be expected and not really mitigated - you just have to wait it out for the most part.
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Specialk - thank you. It does sound like what other people on taxotere and taxol have experienced. I think you just lowered my BP by about 10 points, lol. When I mentioned this to my MO's NP last round she gave me a look like she'd never heard of such a thing.
HapB - I take my BP and pulse regularly, and always before I work out these days. My BP is up a bit but I've written that off to anxiety, and its nowhere near dangerous levels. I mean, if anything it's probably better this way, I'm currently running about 120/80 and I'm usually 10-20 points below that. My pulse goes up quite a bit about a week after infusions, and then comes back down (up is ~70, normal is high 40s to low 50s). It is currently at about mid-50s, but my RBC count has trended down over the course of all my treatments, so that does not surprise me and is probably why I haven't been able to maintain my previous intensity during workouts.
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hapa - if you can handle it, try to up your protein intake between infusions to help preserve your RBC. Once I got past the first week of feeling meh, I ate as much protein as I could cram in my mouth, lol! That is not my normal modus operandi, but I knew I needed to up it to break even through chemo. The thing that you need to watch is your hemoglobin number - that is the anemia marker. It is tied to RBC, but hemoglobin is what oxygenates your muscles and a lowered one will make you feel less energetic. Protein will help keep it up - besides the usual meat/poultry/fish/eggs/dairy, you can also get a good protein boost from Greek yogurt, fortified cereals, quinoa, nuts and nut butters, and beans. LVEF may actually be improved by exercise, as it is one of the things doctors will tell patients to do when they are diagnosed with CHF. Not sure why the NP is mystified by the swelling - it is on every Taxotere side effects list I have seen, and they advise you to notify your MO about it.
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Specialk - protein is hard for me. Vegetarian since the age of 16 and vegan more recently. I started eating fish and eggs again with the chemo because I knew protein would be a challenge, but I haven't hit my 3x/week goal for eating fish and I've eaten eggs once so that's not going well either. Seems like I need to get back on that, and maybe this round when I'm craving KFC (I blame the steroids) I'll just go get some. Thanks for the advice! I really appreciate it!
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hapa - no problem, happy to help! What about vegan protein powder mixed with unsweetened almond or coconut milk and frozen berries? I like Plantfusion and I found that cold creamy stuff went down easy during chemo. That is my go to shake, I use one scoop, 21g of protein, Vanilla Bean flavor, plus about 1 c frozen strawberries, and about same of unsweetened vanilla almond milk
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KasiaK, my doctor was so surprised! She said she had only seen one patient in her career (and she is in her upper 50s) that was Grade 1 and triple positive. Where are you at in your treatment? I am going in for my 8th of 12 tomorrow (Taxol, Herceptin, and then I get Perjeta every third week). Then I have six weeks of daily rads, followed by Tamoxifen or an AI (not sure which one yet because they want to check my hormones). I will continue to get the Herceptin and Perjeta every three weeks until next March or April.
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LaughingGull- I actually had a LAVH fifteen years ago due to endometriosis, adenomyosis, and a leiomyoma! It was such a relief to finally be rid of the pain and heavy bleeding! However, due to my age at the time,being 35 years old,the ovaries remained. So, back then, I was put on BC pills and told to take them until I was 50 years old. I opted to discontinue them in 2012 to see how I felt. Since I felt fine, then it was time to make the change. I always knew I wanted eventually to get an oophorectomy but wanted to wait until I hit menopause. Five years after I discontinued the BC pills, I was diagnosed with breast cancer. (My breast surgeon thinks there is a link between BC pills and breast cancer. My MO doesn't think that was the cause.) We'll never know. Just in case, though, and since endometriosis is fueled by estrogen, I'm opting for that prophylactic oophorectomy now! Looks like it will be this summer and I can't wait!!!!
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I just skipped thought a bunch of pages , so I hope I didn't miss anything dramatic. Shelabela-I took Effexor for hot flashes when I was on Tamoxifen. My hot flashes were the worst in the day and I had like 4 an hour that were drenching. I could sense one coming on and there were a couple times that I thought I would have an anxiety attack with it. So I would have tried anything to help. Whoever mentioned that it is hard to get off of is correct. Someone on this site someplace posted their process which included separating the capsules and counting out the little beads as you reduce the amount. You get these awful brain zaps. Made me a little nervous to drive a car.
I take a low dose of Cymbalta for joint pain from ARimidex now. My hot flashes aren't so bad on Arimidex.
Hapb-I took tamoxifen for just short of three years because at 55, I wasn't in menopause when diagnosed. My surgery and ensuing chemo through me straight into it, but my oncologist said tamoxifen until he felt menopause was fully completed. My OB/gyn chose to do a vaginal ultrasound every six months while I was on tamoxifen to monitor the uterine lining. Just short of 3 years, my normal pap showed endometrial cells which weren't normal for people my age. Not cancer but an anomaly. So he got on the phone with my Oncologist, while I was sitting there, and they switched me to Arimidex immediately. Everything has been ok since. Relatively speaking lol. Both things have their unpleasant side effects.
When I made it to five years total, I took a break, thinking I would not go back to an AI. Then last December I had the neck thing that I was having heart failure over (which is still there I might add). That sent me running back to Arimidex. My new oncologist (I am a curse to oncologists...first one passed away...second one had a genetic eye disease that had been in remission and then wasn't) says 7 years on Arimidex, so I would have about 3-4 more to go. I went to the site and did the program they have where you get the actual drug as opposed to a generic. While the hot flashes seem to be a smidge worse, the other side effects seem much better.
Special K-I will touch base later in the month as it gets closer and we can figure out a time to meet.
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Tld - I did rads on the left side and had to do the "take a deep breath and hold it" routine. I did burn some and the skin peeled off a little deeper than a typical kitchen burn. The rad onco prescribed a cream (something like silver silfadine - may have misspelled). I slathered it on and placed a panty liner between my skin and a comfy sports bra. Totally dooable. It wasn't really painful. It just looked like it should hurt. The worst part of doing 36 rads was the driving back and forth.
I was one of the persons who kicked Effexor to the curb by opening the capsules and counting the beads. I gradually lessened the amount of beads over a period of a couple of months. I got crazy brain zingers when I first tried to cold turkey it. Effexor just didn't do a thing for my hot flashes
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fluff - sounds good!
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Does anyone dye their hair after having breast cancer? I bought I read on here of someone dying theirs. My hair is super fine and thin now so i was going to get some highlights to make it look better but friends today all said that you cannot dye your hair after cancer. Is that true
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Here is some statistical info on hair dye and breast cancer. I had been highlighting the top of my hair and coloring the roots for many years prior to breast cancer, and my hair grew back in 100% gray, so as soon as I had enough hair I went back to coloring it - same way, ash brown root color and highlights. Of course, this is a personal decision, but I have not read or heard that you absolutely should not color your hair after a diagnosis. There are some products that contain more natural ingredients and some who go back to coloring have started with those so as not to damage their new hair.
https://ww5.komen.org/BreastCancer/Table24Hairdyesandbreastcancerrisk.html
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Thank God! I am so tied up in knots about it all. I ate well and exercised before diagnosis but I'm trying harder to eliminate known contributors like sugar and alcohol. As a bonus, my skin does look better when I don't consume sugar and alcohol, I've noticed! Having hair again is something I'm really looking forward to. I have about a half inch now and it's dark with some gray. I'm ready to get back to espresso brown with natural highlights no matter how short! It will be years before my long hair is back. 😊
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Cupcake, I am in the same boat as you. Half an inch and super dark with gray. It's about half and half. I was naturally brown but I was /am a redhead with my wig so copperish it will be once it is long enough.
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I use EWG to check almost everything I use topically, including hair color - I go to a Redken salon and the products used for me score a 1. Most of my cosmetics are very low on the rating scale and I used EWG not long after I finished treatment as a guide in figuring out what to switch to from what I had been using, it is a great resource. The link I posted was citing study data, and the comment from the Council was only that - a comment, not the focus or the conclusion of the article.
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Hi everyone. I saw my allergist yesterday and decided to stop allergy shots. I asked for a copy of my intake sheet yesterday and on it he had written "Allergy shots help with breast cancer treatment."
So, wisened friends, is there any evidence to support this?
Oddly, he did not say this to me during the appointment, so I was a little surprised to see it in the chart. I had mentioned that I was being treated for BC, though.
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Hi Ladies! It is gorgeous weather here in Virginia and I'm hoping that it is beautiful where you live too!
Had my 8th chemo yesterday and got a copy of my bloodwork. They did not say anything to me about it but quite a few numbers are off. Should I be concerned if the nurse/doctor did not mention it? Here are the ones that are either too high or too low:
RBC 3.30 (normal is 4 - 6)
HGB 11.2 (normal 12 -17)
HCT 31.7 (normal 35 - 48)
MCH 34.1 (normal 27 - 34)
RDW-SD 47 (normal 36.4 - 46.3)
RDW 15.2 (normal 11.5 - 14.5)
Potassium 3.3 (normal 3.5 - 5.1)
Chloride 109 (normal 98 - 106)
Calcium 8.1 (normal 8.8 - 10.2)
Total Protein 6.1 (normal 6.3 - 8.3)
Magnesium 1.5 (normal 1.6 - 2.6)
Of course, my onc is against supplements other than B6 and B Complex so I will try to up my intake of beef, dark green veggies, etc. I am much more fatigued now but I guess that is to be expected after round 8. Also, still struggling with diarrhea, which I know might cause some of these numbers to be off. I've lost about 12 or 13 pounds in these 8 weeks because of it. I am taking Lomotil as needed. Do any of the above numbers signal something that I should be worried about and maybe call the doctor and make sure that they are paying attention to my bloodwork? Thank you in advance!
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tld - your counts are expected to drop as they are affected by chemo drugs, and the most critical for watching are usually WBC, ANC, platelets, and HGB - all on your complete blood count (CBC). Some of the values above are from a CMP and some from CBC. Your hemoglobin (HGB) is great, no current danger of needing a blood transfusion. None of your counts are alarmingly off, so that is good. It can take a number of months post-chemo for these numbers to return to normal ranges - sometimes even longer. Also important to note, these ranges were originally established for adult males - not females. Women often fall into the lower end of the range prior to treatment normally, so have less room to drop out of range due to treatment.
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Special k, what a great resource you are for us on this board, and such a voice of reason to talk us off the ledges. Thank you.
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Homemadesalsa, I agree with you 100%! I think we all want SpecialK as our next door neighbor!
SpecialK, thank you for your quick response! I feel much better now about it. You are awesome and I so appreciate your wealth of knowledge!!
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tld2017
I don't know about your numbers. They all look pretty close to the ranges.
My Oncology Nurse Practitioner told me that the ranges I saw on my labs were for a an average male. Go figure.
Did you want to take off that weight? If so, probably not how you wanted to do it. Considering some gain weight, this might be a positive.
Vicky
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CoachVicky, even after the weight loss of 12 or 13 pounds, I still have about 35 pounds to lose to be within the normal range for my age and height. It is definitely a hard way to lose weight but I've got to say, I went to Kohl's Monday for the first time in 2 months and I was happy to fit into a smaller size! Hey, when in chemo, even the small stuff is cause for celebration!
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Aww - you guys are welcome! That is why I am here! I keep all of my lab reports and have them in chronological order and have looked at them for patterns. I also am able to graph individual results - say like hemoglobin - from my patient portal, which is a nice feature. It also helps that in my pre-breast cancer life I worked in Transfusion Services, so have experience with this area. I have a number of former co-workers that are personal friends - two of who were diagnosed with breast cancer after I was that I accompanied to treatment - and we discuss lab reports and values all the time as it is an area of interest.
tld - yay for smaller clothes - take any victory! I gained on chemo from the fluid retention and steroids - def not because I was eating more, lol! I found it very hard to take it off afterward, I am one for whom anti-hormonals cause weight gain even with the same calorie intake. I have found the workaround that is effective for me and finally lost the additional weight but it was a struggle!
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I was supposed to have #3/6 of TCH today but got a call to postpone for a week because my platelets were only 46 and needed to get up to 100. The rest of the many labs emailed to me last night looked in the normal range. Anybody else have this happen, I suspect it will change the whole rest of the treatment schedule..
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