Starting Chemo March 2015
Comments
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Just to weigh in on diagnosis and what I chose.....
I started mammograms at 39, not because I have a family history or anything just had a few friends get breast cancer and it worried me. I never once even got called back for a repeat mammogram. Doc did tell me I had dense breast. Had my yearly mamo in Dec 2013... nothing unusal, then in Sept of that year felt a lump.. figured it was nothing and it seem to change with my period. I knew I had my annual coming up in Dec so I waited(big mistake) Doc felt it at appointment and sent me for mamo and ultrasound. Mamo never picked it up but ultrasound did. The surgeon who did the biopsy said it had prob been there for 2 years! No family history, did everything I was suppose to... and there ya go!
Tumor was originally thought to be <2cm. Surgeon and Plastic surgeon said they thought they could get it all with a lumpectomy and it would look great. I agonized over the decision because my first instinct was to just take them both off. I went back and forth for weeks weighing the pros an cons. I really didn't want to be down for 6 weeks and at the time did not think chemo was on the table. I chose the lumpectomy and after it was done the surgeon told me that I could not have made a better decision because in order to get clean margins she had to take a little bit of skin. Skin that she would have left if I had done the MX. SO ... I really couldn't be happier with my surgical outcome. For now I have two small scars and look exactly the way I did before! Now I did not expect a lymph node to come up positive and the tumor was 2.5 cm. So here I am in Chemo land!
So screenings did nothing for me! Luckily I did self exams
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Trvler -- Oh it's shedding... if I run my hands through it I get a pretty good bit. But it's not coming from the scalp yet that I can tell. My hair is pretty long so I am used to shedding but its quite a bit more than normal. -
I have lost faith in screening mammograms. My tumor was palpable and the friggin mammo didn't pick it up! Neither did the u/s - just showed a normal sized lymph node but with abnormal morphology. The node (that turned out to have a micro-met) was practically sitting on top of the 2.1 cm tumor and neither one picked it up.
The MRI would have because it picked up the residual (dirty margins) and another lesion but they originally just wanted to 'watch and wait 3-6 months'. So glad I pushed for the excisional biopsy when I did!
Now I'm planning a BMX with reconstruction and I will never do another mammogram. Even if they recommend it - I will refuse and get the MRI instead.
Fool me once, shame on you...fool me twice, shame on me! No...they won't have the opportunity to fool me twice!
Bekah
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Oh Leigh- I'm so sorry. Thank goodness you did do the self-exams, and so glad you are happy with surgical outcome, that's a lot. I really can't wrap my head around how you can do everything you are supposed to do.....and more...and wind up here. I'm so sorry you are here. but. Enjoy your posts and if you have to be in chemoland, I'm glad you're here with this very excellent March group
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About the cold caps - I thought long and hard about it, discussed it with my husband, and decided to go for it. From what I read and heard (talking to a few local cold cap users) - a lot of success depends on the type of chemo drugs. Some are tougher on hair than the others. I'm getting Taxol and I think I read that it is not as harsh on the hair.
Also, before proceeding with it, I asked my oncologist if medically it was OK with him. For my particular cancer he did not see any issues. Also, his office was not going to give me a hard time.
Yes, it is a lot of work and it is quite expensive. As someone pointed out earlier, you pay not just for rental of the cold caps, but dry ice is not cheap either. Some chemo places do have subzero freezers and then you don't have to deal with dry ice. From what I saw, in Illinois there are just four such chemo centers. Mine does not have the freezers, so I'm stuck with dry ice.
I am halfway through my treatments, I've had 6 weekly Taxols so far and I have most of my hair. I don't think anybody can tell I have shed any yet (there is a photo of me on this thread posted on April 7th). I am shedding a little, but it's just strands, no clumps. Also, I can only wash my hair twice a week, in cold-ish water and I have to baby it, no hot styling, no styling products. I have to use sulfate free and paraben free shampoo, etc. So, I don't exactly look like my usual self, but I'm lucky to be able to work from home during chemo. And I am happy to still have my hair. I would imagine that after 6 more treatments it will thin some more, so I won't be able to tell if I'm a success story until then.
I know Wpmoon was doing the cold caps too, but we have not heard from her in a few days now. I hope she's OK.
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I've been complaining earlier about my painful and swollen wrist joint and my hurting hands. The wrist is inflamed, no doubt about it. I talked to MO about it on Tuesday and he hoped that the steroids in my pre-chemo meds would help. And they did, for about 24 hours. But now, since yesterday afternoon it's back to the inflammation. We called the MO and he wants me to see a rheumatologist as soon as possible. They want to make sure it's not a connective tissue problem. I don't even want to look it up to find out what it's about. I'm hoping it will go away, but I do have an appointment for Monday.
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Vent post
Went in for infusion #3. Major failure. They could not get blood out of my port. Spent over an hour with different meds in port, pumping port, doing exercises. Finally I was sent over to the main hospital for xrays. My port has a clot in it. Fucking great. Two ways to deal with this. Remove and reinsert a new port or take something up through my groin and unclog. The latter doesn't work all the time. They called over and my oncologist wanted to see me to answer questions. Go back over to her office. Sign in. After waiting over 30 minutes with everyone who came in after me being seen I officially lost it. Went up to the front desk and started crying that she either see me NOW or I wanted to go home. The front desk girls send me back to the infusion room nurses (who I LOVE). I start crying (again) to them and they had no idea I was out there waiting and that I needed to go home and they would call my surgeon's office ASAP. Needless to say a very strongly worded letter will go to my Cancer Center about the incompetence of my MO and her staff. This is the third strike of mistakes, mishaps and plain laziness. I will sing the praises of the infusion nurses within said letter.
So I'm still waiting to hear when surgery is scheduled. They only do those on Friday so I might be a week(s) out. I'm pissed off, sad and every emotion you can think of. I have that charm bracelet and I might just go down to the store and buy an "F" charm for Fuck. I knew I should have taken a Zanax this morning.
I feel better just posting this.
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Yikes BB you have enuf on your plate already. Stay off Dr Google. Wait for the expert to evaluate. I'm so sorry. Pain makes you crazy not knowing what something is makes you crazy. Sending s hug.
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wanting to try to put a smile on at least one person's face today. Enjoying a cup of coffee and watching my new $8 clear feeder the very hungry birds finally found today. It slipped a little but they don't seem to care if it's cockryed. These birdies bring me great joy! So much life in a tiny package. I will try to learn. Grasshopper.
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Ninjamary, I am so sorry. That sounds scary. Is it your choice to make which solution will be used, or are they making the decision for you?
They had a problem drawing my blood before my last infusion, but it was promptly resolved after looking both ways, coughing, etc. I'm a scaredy-cat, so I was very nervous for a couple of minutes that my port was not working. Reading your story makes me more nervous, and I feel very bad for you.
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Katy, thank you for the hugs and for the birdies photo. They are cute creatures.
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oh Mary! I hadn't seen your post when I put my frivolous one in. That is major effing RIDICULOUS. I am very sorry you have gone through all that and that they made you wait even longer. I don't understand how they can be so incompetent. As you say, thank goodness for the chemo nurses. I am sending a HUGE hug to you. But after what you've been through today, hugs and pictures of birdies aren't gonna cut it. You need GD Xanax. And plenty of it.Thinking of you.
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hi all, I am still here. Had major headaches for a week after first infusion, and eye troubles to boot. I have glaucoma amd very dry eyes to begin with. Ninja, i am so sorry for your port problems, i hope they fix it painlessly and soon.
I am an East coast, triple Negative girl on TC. My hair is shedding past 2 days, so buzz and wigs starting tomorrow. Just wish i could wear my contacts. And lucky me, the TC gave me acne, so rx for cleocin for that oh so minor SE. Just annoying. I have to be bald, wear my coke bottle glasses and have acne, too?!
It will all be worth it, if TC is killing my Ca cells, tho. Being trip neg scares shit outa me. But I try to forget that part.
I hope everyone can have minimal BS and SEs from this BC. This is no journey or adventure. It's a rotten roller coaster someone stuck us on.
Love and hugs to all
Arlene
PS my reg was changed from ACT to TC because nodes were negative. 6mm of DCIS, multifocal was found in surgical path, along with the 11mm of IDC. Had left mx because mass was at 10:00 and lx would look awful. So I am out buying scarves to cover my TE on left with 450cc and 34DDDD on right. Talk about lopsided. Yikes!
Pic is of me on my last day as a brunette
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Ninjamary- I've had port issues. They said for a clot they have a medicince that they can inject the port with that's stronger than Heprin (what they usually use to flush a clogged port with). It takes about 30 minutes to clear the port. With all my port issues, they never said they would redo it due to a clot. My first one was defective, no blood drawn no matter what and had a leak. By chance, is yours a mini-port? That's what I first had and my surgeon said it was a newer mode. He was really disappointed that it was defective.
I'm almost done with round 3. In the chair now on the cytoxin part. I HATE the sinus pressure it causes. Ugh! All I keep thinking about is the burrito I'm about to treat myself to after this at Chipotle down the street!
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Oh, Ninja: I am so sorry you have to go through all of that. Fuck is right! You don't know which way they will go, I take it? I am GLAD you let them have it. They deserved it. Please keep us posted and vent all you need.
BB: I hope the rheumatologist can help ease your pain.
Joanna: Enjoy your burrito!
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Arlene- your ears must have been burning. So glad to hear from you. I was reviewing the thread this morning and realized you hadn't been on for awhile. It is a rotten roller coaster ride, and all you get to eat at the amusement park is a shit sandwich. For months on end. I'm just grateful also that my SEs are more in the annoyance category than what some of the others have had to deal with. Welcome back
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Joanna- glad you're almost done today. Really cute pic! If you can look that good getting pumped full of...er......you know what, I can't wait to see you in six months!
And yes! Yum! Burrito you have earned it
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So Katy, did you pick a wig?
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What pill do you guys take to help with nausea? I took the compazine last time and it made me feel awful. I have ativan which will make me drowsy. I am not terribly nauseous so I am thinking just to suck it up and deal with it.
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Trvlr- since there were only 3 of us there, and the other two ladies had already been through chemo (one had twice), they gave me all 3! Very generous. I'm guessing I'll wear the blond one if I have to go someplace where I care how I look (unlikely). The dark red one looks very much like a picture of me taken when my youngest nephew (now almost 21) was a baby, so it has sentimental value. Actually, the grey one shocked me when I looked at myself in the mirror. I saw my dear mother, now gone 11 years, looking back at me.
They are all fun, and I expect will all have their uses. They are not high quality, which is obvious when you touch them. If I were to wear a wig every day, I would have to get something of much higher quality.
But they served the great purpose of letting me know that a wig is a suitable option for me in the off chance my hair does not grow back. Happens in only the rarest of cases. Plus it snapped me out of an dangerous slide down the slippery slope of depression. I've even feeling much better since I got out that day
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I am so glad that helped you, Katy. I hated seeing you having such a hard day.
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I'm on Zofran for during the day and Phenegran for night. Phenegran knocks most people out. It works better than Zofran but it's probably because you're asleep through it!
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Trvler- I start with Zofran. You can only take that every 6 hours, but you can stagger the compazine with it and take them every other 3 hrs. Does that make sense?
Nausea sucks, it's good to try to stay ahead of it. On the day I stop the steroids, whichever day that is, I prophylactically take these two meds for a day or two. I don't want it to catch up to me. I don't do well once I start barfing. Just a circular activity. Barfing begets more barfing.
Sorry the compazine makes you feel shitty. Have you thought of maybe asking for what Bekah was recommending? The Sancuso patch? I wouldn't put up with nausea until I'd tried everything out there. Get on your bat phone to the MOs office and get something, anything, different.
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I have Zofren. Will it make me drowsy? I think I maybe took some this am. God, I can't keep all these drugs straight. I don't know how old people do this.
By the way, I made a donation to BC.org and dedicated it to this group. I posted a thread if you want to see it.
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thanks T.
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I take Reglan because I can't have compazine. Take it for about 5 days after chemo and it works for nausea and constipation. But I can't take Claritin on top of it or I get woozy.
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That's funny. I guess I picked claritan D (the non drowsy) and stopped it because it makes me jittery and clumsy.
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I seem to get headaches from the nausea meds, but it doesn't outweigh the benefits.
I'd say, just like everything else around here, different for everybody, and trial and error among the available meds is probably best course until you find something that works for you.
I clicked on your user name and found your donation thread Trvler. You inspired me to post AND to open my wallet in this group's name as well.
There simply are not words for the help and support I have gotten from this group. I feel I have real friends here who truly understand. It has helped to take the negative pressure out of other relationships in my life that were struggling under the burden of thishorrible dx. For that, I will be grateful the rest of my life.
A hug for each and every one of you.
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I don't know why, but my MO office made a big deal to get the regular Claritin, not the "D".
It doesn't make me too drowsy, but I guess I don't mind if it does. I don't feel bone oain, nausea or fear. When I'm sleeping
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and WHERE IS SHAZ!!!
I'm getting worried
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