TRIPLE POSITIVE GROUP
Comments
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Thanks for all the info... I'm gonna take a look at that thread. It does sound like we have alot in common on the treatment. I haven't started anything yet. Got a call today that they want to do a 1st infusion on 12/7. They do want to have a port installed. I know this is the right path to take but it is scarey. How it was found... I did feel something weird in the shower but was in the process of making an appt with my gynecologist anyways. I didn't say anything about it when I went for the appointment and she found it when she did her check up and sent me for a mammogram. 1st one I ever had and that day the radiologist told me that he felt very strongly that it was cancer.
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Neetah Hang in there and please know that it really does get better. I was diagnosed one year ago and I so clearly remember those early months. I felt like my whole world had been turned upside down and I was in such shock about the extent of the treatment. Before that, I had never even heard of Her2+ BC. My surgeon said to me "it's going to be a year of your life" and she was absolutely right but in general it has gone quickly and each part has been easier than the last. Chemo was tough, radiation was easier, Herceptin alone is easiest and Tamoxifen is just an adjustment...I believe the hardest part of all is the uncertainty, the unknowns. That's where these discussions are so valuable. The women who had already finished answered so many questions for me and gave me tips on how to prepare and the women going through it at the same time were my emotional cheerleaders:) We'll all be cheering you through it too...0
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Neetah: Sorry to welcome you but you'll feel really at home here. Come often and you'll get lots of information. There are many very knowledgeable ladies here and most of us would have had a very tough time gettin through all this without each other.
Chemo, while not fun, is very doable and as others have said, rads pretty darn easy. Herceptin is pretty easy and you'll have your heart scans (MUGAs for me) routinely while on Herceptin because of the unusual potential side effect. I too was on TCH.
Welcome again! Arlene
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Neetha: I'd feel bad if I didn't send you to the cold cap blog. Check it out if you are interested in keeping your hair. Some didn't want to stress with the caps but for me they worked and sure kept my mind off the chemo while I was doing the caps.
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I'm newly diagnosed, new as a member of this site as well. Hello All
@neeta74: I realized I had cancer last May, was diagnosed in June, had surgery right away and am now in my second phase of chemo + herceptin. My treatment regiment seems quite different than yours (broken down into two consecutive phases of 12 weeks, them 1 phase radiation & 1 yr herceptin, followed by the 5years of pills).
My introduction to the porta-cath was very abrupt and rather un-informative as well. First time it was mentioned I was being wisked away for a pre-op examination. It all just felt too rushed - I was very uneasy with it. It happened, incidentally, that the surgery for it's insertion was cancelled and I am thus far more comfortable with that. Plenty of women have them, with no problems at all, though. I think, in my case, I'm just not comfortable subjecting myself to any medical proceedure if I don't feel like I can make an informed decision about it. My whole introduction to treatment was somewhat marred by the sensation that wasn't being educated enough about what my choices were and what I could expect as a result of one or another choice-made. All to say that; I want firstly to emphasize the necessity of writing down your questions and asserting them when you're with medical staff. They are busy people, and they are often very concerned about overwhelming new patients, you may have to get pushy about getting answers.
It's a tough time; the couple of months following (and including) diagnosis. I echo the sentiments others have shared here; I'm so sorry you're going through this! I've a history of health issues already, so my greatest fear was that the treatment would render me dysfunctional and unable to manage for both myself and for my child (I'm a single parent). I anxiety dreams surrounding the surgery, and was really torn up over thoughts of chemotherapy. These fears over-shadowed any possibility of 'processing' the diagnosis itself... the second month (after diagnosis) offered me opportunities to venture 'there', alas.
However, I am very pleased to share with you my relief, as I embark now into my 17th week of chemo. It's true: there's not much fun about it. The intitial introduction of each new cocktail (of drugs) can be a little rough, but your body adapts (because we're AMAZINGly built to), and do generally go about creating new routines, as well as methods for handling symptoms. In rarer cases, patients have unexpected reactions, but most of the time we are quick to innovate and manage and navigate through our days, even while symptoms accentuate over time.
It may take a little while to journey through the shock, so permit yourself that time and patience. If you hadn't been already; you will need to prioritize all matters pertaining to self-nurturing / self-care. Prioritizing diet and rest, most of all. Open yourself to the assistance offered by supportive friends and family members. And whenever it is you feel ready: Find expressive outlets for your feelings. Recently, I have found it hepful also to speak with those whom have gone or are going through this. I would caution you to be wary of (triple cross-reference) any advice offered based on random internet searches or the BC story of a friend's friend (not all BC are alike, for eg, and most folks don't know that). Keep these things in mind, and heed only the most relevant info's, and you'll quite naturally / intuitively move through the process while getting better and better at both coping and managing. It took just over one cycle of chemo before I felt my confidence climbing in place of the fear associated with treatment...
WOW - this is sooo long - sorry about that! I should stop here...
Hope this helps in any/some way Neetah.... Warm thoughts to you....
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Oh darn - I just realised this site may be hosted in the U.S. (I am in Canada) - so the issue of busy medical staff not providing enough education/answers may or may not be as relevant to you (I receive care via universal health care services)... ?
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ricia, there are lots of women from canada here. and although we in the US don't have universal health care services, we DO have busy medical staff who don't always provide enough answers or education. it happens here, too.0
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YaYa - I was curious about that. A friend recently described a discussion (between two Canadians and two Americans about quality of care) and he thought it wasn't quite as difficult on these fronts in US due to legal-liabililty issues... Mind you, I suspect everyone at that table could afford / or otherwise has private medical insurance, whereas I'm thinking I would have been without treatment options altogether, if in the States....
Thanks - appreciate the insight!
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Just wondering if any of you Triple positive ladies still have issues with low red blood cells.
I finished chemo in March this year, and still have quite low red blood count. Not enough to need a transfusion, but not too far off it. It hasn't really bounced back up since chemo. I'm wondering if Herceptin has anything to do with it.
Trish0 -
Trisha-Anne,
I had a low HB till I finished Herceptin, not low enough for a transfusion but enough to make me feel tired and yuk. I had my blood checked 3 months after I finished Herceptin and it had bounced back to mid normal range and stayed there ever since.
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Ricia: Welcome! We have LOTS of resources in the States that will jump in and support those individuals without private insurance. Fortunately, I have good insurance but when I began my treatments (in Nevada), the financial staff indicated that if I couldn't meet my copay they would have it covered by organizations within the community. Not sure this is the case everyone in the US and at all facilites but I hope so.
TrishaAnne: My RBC is still low, not drastically but it is low and I'm nearly 6 months PFC. Guess it could be the Herceptin.
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Thanks Lou and Arlene
I just googled Herceptin and low red blood count, and yes - it's one of the se's. Guess I should have thought to do that earlier lol
Trish0 -
Welcome neetah and ricia - I harp on this but please consider icing your fingers and toes during the taxotere infusions to prevent nail problems. Not everyone gets nail problems but the icing is thought to help prevent problems. You can do a search on nails and info will come up. I used frozen peas and lunch sacks. Again welcome - glad you found us.0
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Trisha-Anne - my RBC (red blood cell) number is low still as well. I just got Herceptin today, number 15, I believe. Herceptin does indeed continue to depress your production of RBC's but what you need to watch is your hemoglobin number. This is the number off which a transfusion decision is made and the number that is responsible for the fatigue. Usually transfusion is done in the low 8's, depending on your oncologist's preference, or if you are symptomatic with lethargy, dizziness, palpitations, shortness of breath or confusion. The low end of normal for hemoglobin is 12, but it is normal for the number to stay low for a while.
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Thanks for the 'welcome's
and feedback. ArleneA: YES I doooo hope so too. I hope also that things are at least a little better w/new implementations at US Fed level...I just can't imagine it (tho I should try, 'cause we're heading down the two-tier path here at an alarming rate).
Trisha-Anne: I too have just skirted over into the red RBC results. Just in case it's a Common-Wealth measurement thing: Normal readings will measure at 4.00-5.20. Low markers are 0-4. I'm afraid all I know right now about the need for transfusion is that it can be indicated by experience of a sustained / un-manageable (w/ Tylenol or Ibiprophen/sp?) fever. Thanks for insight SpecialK!
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Hello to the gals Ricia and neetah, welcome to this site, these ladies are vaLUble in there knowledge!!! I am also new to this site, Ricia i am also from Canada Hang in there ladies there is a light at the end of this tunnel, I am just finding. Neethah you need to give yourself the best possible chance Stay the course
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My hemoglobin numbers have been low - still on Herceptin and finished chemo in April. Now they do bloodwork every Herceptin to see if it's any higher.
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neetah - Are you going to have the BRCA gene test since you are so young?0
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ArleneA I've been working a full-time freelance job for 5 weeks now. I did have an interview on Wednesday that seemed to go OK but not sure. I know there will be at least one more interview if I make the cut. This current job should last at least till the end of the year. Hopefully I'll either land this other permanent gig or this current gig will continue.
I do have a few other applications out but not sure if I will hear anything. Granted it took 2 months for this other place to grant me an interview. I'm applying to larger organizations. I'm tired of working for small places that have no money and getting laid off or no raises.
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welcome ricia and neetah When I was diagnosed I had not found this site yet, so you are a step ahead by finding this early...everyone here has so much great information....and you can find a thread here that pertains to what is happening to you at that moment.
Neetah you are in my neck of the woods, I am in the fingerlakes area, Seneca Lake. I used Rochester based Drs. but met someone else here that was from syracuse and received excellent care. it is so hard when first diagnosed, like the keystone cops running amok in your head, remember to just take one day at a time. and patience.....lots of patience
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carberry: thanks for the welcome.
kennylynne: why hello there fellow Canuck-ian
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Hi Ladies, TNBC is treated with chemo ,surgery chemo. As said, there are no receptors ,0 none. so basically it is all studies.... I will keep you up to date , as I will probabley inter the study at UCI... for all my fellow TNBC sister's and me ,I think thats a song...LOL
happy holidays to you and yours...
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Good morning all!!!
ricia~~ I also have to have 5 yrs of the pill to take after the chemo / herceptin. I also have to do the radiation treatment. I haven't started any of the treatment have just been told about it. They scheduled a tentative date to start of 12/7 but I haven't gotten the port yet or gotten the ok from the surgeon.
omaz~~ They drew my blood to take the test and were going to see if it is covered by my insurance but would call me if it wasn't so I could make the choice. I haven't heard anything on the test since the blood was drawn. Was going to ask on it today when I see the surgeon again to get the stiches removed.
Any and all advice/tips is welcomed as I don't know what to expect. I know everyone is different. My question is how long before the hair starts falling out? That's the one that is bothering me the most. I can deal with the fatigue and nausea.
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Neetah The hair loss is fairly predictable with Taxotere. Mine started shedding very heavily around day 16 and I buzzed it shortly after that because it was such as mess. I had already cut it to shoulder length before that so that it would be the same length as the wig I had picked. When I switched to the wig, people at work really didn't know the difference and just said "oh, you got your hair done-it looks nice!" Wearing the wig was intimidating for me at first and I thought everyone would know but in reality no one had any idea (my avatar pic shows the wig). A lot of women don't like wigs and wear hats or scarves instead. My wig was always comfortable and I wore it to work 5 days/week. I wore hats on my days off for a change...0
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dragonfly1~~ That's a very nice wig. I never would have guessed it was one. I've come to accept that I probably won't find a wig the same color as my hair unless I spend a fortune on a real hair wig and have it died which I don't have the money to do. I've been out there looking online and gonna try to match it as close as I can. I have found a few synthetic styles I liked but not sure how to know if it's the right size or not or if the website is reputable or not. I have emailed a place here locally but I'm sure their prices will be up there. The onc said I should cut my hair short first. I wanted to keep the legnth and try to find the wig about the same legnth. My hair is shoulder length by the way and strawberry blonde.
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Neetah I went with synthetic because it's easier to maintain-just wash once a week, dry overnight and brush and it maintains its shape/style beautifully. Mine is the "Regan" wig by Rene of Paris/Amore if you are interested in that style-I think my color was spring honey but you'd be surprised at how many nice colors they have. I went to the local wig shop for a fitting to be sure I got a comfortable wig and to be certain of the color. It made a difference and I found out that I had a very small head-a bigger wig would not have fit properly-they also cut the wig to create some long bangs in the front. You should try a local wig store even if you don't buy there just to find out the right fit and color...0
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Hi all! I am totally bummed. I went to start a study yesterday using metformin to reduce chance of recurence. They were all excited thinking I was the perfect candidate. Turned out that my tumor has to be over 1cm or if not, has to have a lymph node positive. My tumer was 1 cm x .7. They cant count lcis tissue, so unless I can get it off label, I am out of luck.
The good news is that my lung xray was totally clear, my b12 is good and so is all my other bloodwork.
So i am going to be happy that it is one year since my mammogram showed clustered microcalcs next week and shot od knowing about my brain, I have an all clear. (had an abdominal and pelciv ct a month ago that was also clear)0 -
Aw, I am bummed for you. I have heard some women have asked their PCP to prescribe metformin and they wrote a script. Maybe you can check with your PCP if you want to try it.
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Need some encouagement from my sistas. I never had any scans done. I went for a 2nd opinion at a different oncologist, and he believed I should be scanned. I went for a bone scan yesterday. My Dr. just called, and said they see any area of trauma on my rib, and he wants to me to go for an xray on Monday. Now I'm really scared!
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OK, I'm a bit confused. Did most of you begin the 5-year pill after Herceptin? I'm on it and they had me begin right after rads??? Just curious!
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