Starting chemo July 2014
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kmntwins -- yep, it's going to be Taxol, Perjeta, and Herceptin. And, oh yeah, it's a big tumor (5 cm) or it was (can barely feel it now). And it's Grade 3. So, MO is using all the ammo she can.
Best wishes to all the ladies suffering from SEs!
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I also had an echocardiogram before starting so they could get the baseline and I'm also on TCHP.
Coyote, will continue to pray for you, I'll be there next weekend.
I'm hoping and praying that SE's from my next chemo Wednesday will not be as bad as this last one. I've only had a few good days vs a good week and a half. One good thing that I didn't get... Drumroll please, no big D! I couldn't believe it since Perjeta causes it. Although the last several days, the big C, bleh 😝
Tomorrow I have my endoscopy and am hoping for good news since I've never had acid reflux issues until chemo.
Hope everyone has a good md restful evening. I'll be hopped up on steroids tomorrow
I bought 100% aloe Vera gel the other day and have been rubbing it on my scalp twice a day since I got it and all the red bumps are gone and it doesn't itch, so happy!
Knmtwins, do you go Wednesday too? Where do go to get tx? I'm so blessed that my dr is part of the new Aquilina cancer center next to Shady Grove. They do everything there so I don't have to run around going to several drs all over town.
This is what I'm wearing to chemo Wednesday. I've worn pink and blue wigs and really wanted the Afro, bahahahaha. Every time I go in to the cancer center now, they ask me where my crazy wig is
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oh pinkninja you look ridiculously cute in that wig!!
Kebab- hope you got to curl up and be comfy...sometimes a day of that can chase those gloomies away!
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Gilesmt- I was told that the risk included vein hardening rendering the veins unusable in the future as well as possible infection at the vein site along with a reaction to the drugs.0 -
pinkninja that wig is adorable. You sound like a patient my onco had. The lady wore a different wig every time she had chemo. Pink and blue just like you. I'm too chicken so I always wear my wig that looks like my own hair before I lost it. I'm a wimp
Nancy
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Pinkninja, Wednesday is my day too. After last time I'm basically just not planning anything for the week-and-a-halfish following my infusion, except maybe standing in my kitchen crying because I'm too fatigued to make myself dinner and feeling sorry for myself because nobody's called me to offer help after I made a point of saying all sorts of positive things on Facebook and on the phone to my friends so everyone thinks I'm on top of things... Er, wait. I'm not gonna do that either this time. I promise.
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knmtwins about the DBMX I did it because I had a lumpectomy in the past and returned after 11 years so for me was not a difficult decision because it seemed that there is something wrong with my boops kkkk Seriously for me was the recommender decision and I have the slime implants that work as expenders too. I'm getting them removed and will put the silicone one when I finish chemo and my PS will fix everything that he need to do than. In my opinion the silicone feels more real and in my case the saline is doing a wears shape on top ..,, you have to think about and see the pros and cons for me the DBMX was a breeze butI'm tough as nails ( so say my Surgeon Oncologist ) I think if you have a good group ok doctors you are fine anyway 😊
Pinkninja I'm on CTH but don't have neuropathy I use Cetaphil on my head and got better now!
Jennliza my heart goes out to you .., I'm praying for your recovery. 😥
Hope everyone can feel better through the end of the week
XO
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Hi, girls...I've been following your posts but feel a little weird about weighing in...
To all of you in the pit, or headed there after your infusion, please continue to hold on...all my warm thoughts are going your way.
JenKay, I do want to say to you (and likely many of us who are similar), please ask for help! Maybe put it out there that you need a few healthy meals in a heat-up ready state because you will be too fatigued to do this yourself. I bet the response will be overwhelming. Let people know that you don't have much energy for a visit, but would be very grateful for that kind of help at this time. My sense is that people want to help, but don't want to intrude and are counting on you to ask. Helping someone who really needs it is such a privilege and I bet your peeps are out there just waiting for the call. My family has been largely absent (except one sister). Some have connected from a distance. I saw a niece yesterday for lunch. She said, "You look pretty good...I didn't know what to expect." I think this says a lot...people just don't know what to do so ask ask ask....Honestly, I wish I could jump on a plane and come down there and make you dinner! Strength is good, but it takes a certain strength to be vulnerable, too. We shouldn't be reluctant to be vulnerable at times...
Hang in there, girls.
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Piggybacking on Mumford's idea, I had a good friend set up a meal train for us (on mealtrain.com). She sent it to mutual friends and posted a link on our local mom listserv. The response was insane; people I met one time 3 years ago cooked dinner for me and delivered it to my house. You can set the dates and add best times for delivery, notes about what you can and can't eat, etc. Highly recommend it, especially if you have a friend who will set it up for you. Hell, I'd be happy to do it (for any of you) if you want.
Last round of AC on Thursday. I'm really not looking forward to more fatigue and heartburn. I'm averaging about 5 hours of sleep a night over here, and it is not good for me at all. I forget who asked, but I get AC with no port, and so far my veins have been totally fine. But I'm super paranoid every time.0 -
Nancy: it is so freeing to wear a crazy wig to chemo and believe it or not, it really cheers people up.
Jenkay: I ditto what everyone else said. I am getting ready to send an email out for meals for the next 2 weeks. I agree that people generally want to help but don't know how or are not sure how we are feeling. I actually have been blogging about everything and then I update it on facebook so people know exactly where I am and how I am feeling. The response is overwhelming. I don't write about every se (like the big D or C
) but basically about how I am feeling and how I am totally depending on God to get me thru this. If you want to see it, here is a link: http://redeemed1.wordpress.com/Boxofrocks, what are you taking for the heartburn? I went thru about 6 different meds for mine and what's working now is Protonix 40mg twice a day and Zantac 300mg (prescription). I am having an endoscope today to make sure everything is ok. My dr said that many chemo patients get bad acid reflux because they get a virus or thrush in their esophagus. I wish I didn't wait until I was halfway thru chemo to go see a gastro dr because I suffered horribly. I am anxious to see what will happen after tomorrow's chemo.
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Re: people helping -- a colleague's wife set up a website, Lots-a-Helping Hands. There's a calendar, and people sign up to volunteer to do different things. For example, some people sign up to sit with me/take me home from chemo (if needed), others pick up my daughter from softball practice on Wednesday nights (when my husband teaches), and still others bring me meals on Wednesdays (chemo days). It's been a blessing but also a bit overwhelming. Some have signed up to bring nonperishables (like the items I put in my sons' lunchboxes), and I've been inundated with bottled water. But, I really appreciate all the good wishes and the woman who manages the site. I'm not sure I would have had the courage to ask for help, and it's nice to know that I can always post a need on the site and have someone help.
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Thanks, Ladies. I am definitely going to be more proactive about asking for help. Last round was the first time I was so clobbered that I just couldn't do *anything* for a week and a half, so it sort of took me by surprise. I didn't have a game plan. This time I kind of know what to expect and I've already touched base with folks about bringing me food and stuff. Now I just have to be better about actually calling them.. I don't know why that part is so hard. I'm so very fiercely independent and I'm usually the one who takes care of people, so I think that's part of it.
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I am still wondering about Chaosrain. Has anybody heard from her? I hope she posts soon and that those two new spots are not cancer.
Nancy
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JenKay - I had a friend like Boxofrockstar who set up a meal system for me every other day the first week after each chemo. I had people come out of the woodwork! It was on takethemameal.com. My friend said people were wanting to help, they just didn't know how, and this was one way they could chip in. I was only going to do it a short time, but she insisted on more dates and all the slots filled up! I know you'd have friends coming from all over to help you out. Please let have one of your good friends set this up. Every time someone brings us a meal I just want to cry at their thoughtfulness.
PinkNinja - love, love, love the wig! Great attitude!
Mumford - you need to post and keep us updated. Don't feel like just because you don't have chemo anymore you can't participate. We're all in this together.
Two weeks after my 3rd chemo I'm still exhausted! This third round hit me hard that way, plus the eye twitch! So annoying...
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WalleGator: I have my 4th chemo on Thursday, and am still weak and short of breath. What IS it with #3 anyway?
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Seems chemo is cumulative. I thought that meant the first few days with C, D and Nausea got worse. For me, I can thankfully say, I'm starting to get that under control, although they are still hide in my room, no one cook food in the house days. It is the fatigue, chemo brain, twitch dripping eyes.
Mumford, you don't get to leave us just because you are done. We are the July Sisters, we will be together forever.
Pink - as always too funny. What a wonderful gift, to lift others spirits, while you too need yours lifted.
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Pinkninja, I've just been taking Pepcid and Zantac because that's what's pre-approved by my OB. It had been working, but on Monday I took 2 of each (which I think you're not really supposed to do), and it barely helped. I'll see her tomorrow, so I'll ask about other options. It's really annoying having to clear every drug option through 2 offices! What ended up helping on Monday night was putting one of those vibrating back massage things under a pillow and sitting back on it. Then I took 2 Tylenol pm and knocked myself out. It was pretty awesome to sleep, but I don't think I should do that too often. I didn't know that about thrush and infection. I'm hoping mine is just exacerbated by my giant pregnancy.
Round 3 kicked my ass way worse than 1 and 2, also. Seriously considering getting a wheelchair to get me around for the next month after round 4. It feels a little dramatic, but my husband can rent one from his job for free, so...0 -
Knmtwins
Did you see the information that I put about the BMX ? I'm also deciding the size shape and where yo put under de muscle on above ..,, I didn't have pain with my surgery beside day 1to 4 . But now with the saline I feel like my skin is do thin to hold .,, and the ports that he put to access and put more saline is on the side do bother me to sleep on my side.
Other than that is ok for now
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I just got back from my endoscopy and he said there was a little redness but everything looked good. He took a few biopsies which will come back in 2 weeks but is pretty sure I'm good to go. I'll stick with the meds I've been on and will see how it goes after tomorrow's tx.
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Just finch my 4 th chemo .,, very tired I had 2 hrs sleep last night .., at least I have only 2 more to go!! Hey , well beside the herceptine ..,
Hope everybody is going good .,, anyone her about Chaosrain? I'm praying for her...
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Pinkninja, I am glad the endoscopy went well. I am going to talk to my MO tomorrow about heartburn and I believe I am getting acid Reflux which I have never had before. I take OTC Zantac and Mylanta but think I will see if I can get prescription strength as suggested by KMtwins. With acid flux what other symptoms did you have besides heartburn and belching. I seem to have a sore throat and sour taste in my mouth and at times my back hurts.
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I'm doing the happy dance. Even thou I wanted to fire my MO, I did not, but she fired me, so even thou they told me it was impossible on an HMO to get a referal to the top oncologist in the north west, I was able to get the referal and get an appointment to if he agrees that I need it to give me last chemo and to continue to treat me. I met him before for my second opinion and he is so nice, and he had the best bed side manners. He is head of oncology at the hospital I was in, and as a blind person this is so interesting to me, he is said to go to patients home if they are to sick to get to him. So I am doing the happy dance that my nightmare maybe over.
Sorry to all of you not feeling well still. I am still not feeling well either, but happier at the moment than I have been for a long time. Finally feel there is a reason to wake up tomorrow morning.
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It hurts my back like crazy, and every time I swallow I get a kind of spreading pain across my chest. I can totally see how people mistake it for a heart attack.
X-posted with giles - hooray!! Hopefully this is the start of a MUCH better experience for you.0 -
Giles: I'm dancing right along with you. When is your appointment with the new oncologist? This is such good news.
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thanks boxofrockstar for the quick response! I just didn't realize heartburn could hurt so much.
Giles doing the happy dance with you! So excited things turned out for you. Woot! Woot!
I am also worried about Choasrain. Choas praying for you!
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Giles - this is the best news I have heard all day.
Boxofrockstar - Absolutely get drugs. Mine wasn't as bad as Pink's, I do 20mg Protonix 1am and 1pm. Before going to bed on the bad days 1-3, I take 1 dose carafate, tastes yucky. My Rx. ins. doesn't cover it, or not well, so check your formulary. Also, I had my pharmacist, just give me a few doses, so it didn't cost over $100, more in the $10 range. My MO likes to write for stuff in bulk it seems.
EVERYONE - most of our symptoms can be controlled (at least some of them) so ALWAYS tell your MO and ask what they can do. I'm still having nausea issues, so am going to ask for phenergan this time, the folks at my BS support group recommend it. I'm also going to ask if I am getting Emend in my pre-cocktail and if not if I can have some for the nausea, as it is supposed to be good too. I'm in the chair tomorrow, so will do Miralax tomorrow night, and 1/2 bottle Magnesium Citrate Thursday night. I expect to beat the constipation again this time, so the d is just a d, not the BIG D. I have ice bags for hands and feet, a good book, water bottle, a blanket, my husband, a sitter for the kids... I think I have everything. Oh, I will be taking another Xanex tonight to sleep. I definitely have pre-chemo anxiety. Although the center is nice and I have a good time, it is just so, I don't know, but you guys do.
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I have it set up for oct 7 but they may move it up, the nurse is suppose to call me tomorrow. When I can tell her about the hospital stay and that my next chemo is still scheduled for Thursday, although I do not have a doctor to get me thru it. I also have rads starting oct 8, so if he does not take me earlier the whole schedule will be messed up. But that is okay, I have an actual doctor who will know his name, my name and be able to say my guide dog looks like a dog and not a child. A doctor who won't make me wait 30 days with diarrhea before seeing me, and a doctor who is handsome and shaves his head to match his patients, and who actually speaks English. I fell like I am in good hands finally. As I said, his office was so confused, because although they do second opinions for group health, they have never been asked to do treatment in the 20 years they have been doing second opinions. It took me all day Friday, Monday and half of today, because as I say best thing ever, my onco fired me and refused to take me back. Or maybe it is because I had my daughter video tape the nurses last week who in urgent care refused me water, food or my medicine to help with vomiting, and how they said on the iPad video that they would not treat me even with neutropenia because I refused to remove the guide dog from the building.
I want to put the video on you tube and see if there is a group health next year, my daughter wants me to hold off and see what happens, she says you can do that later, or you have enough to sue them and win so just hold off and don't put it on you tube until later. I've been so sick, I have no energy right now to deal with that. I just want to move on with this doctor and get the last treatment and move on.my rads are with a really nice doctor also, group health in Tacoma does not have there own rads dept so it is across the street with multicare and that doc is really nice. My PCP also called, they want a meeting when I am feeling better ( ow I got a new PCP also during this fight, one I have been asking for but was not allowed to take patients, GH is allowing me to see her, they want to meet to see how we can work together with SW, nurses, pharmacy and such so that I get accommodations when I come in and the office manager at the new facility called to say the guide dog is welcome anytime I come in for any reason. So we are finally getting somewhere.
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Gilesmt- I'm also in Tacoma and love my onc team at multicare. So sorry you've had so many problems and mistreatments. Hope things get better from here on out for you.0 -
redheeledwomen since I'm now at multicare and rads are at multicare, if you see someone who has a beautiful white lab walking her around, introduce yourself to us, your surgery and your chemo start date was one day before mine, so we maybe running into each other. I do everything downtown for my cancer, I go to federal way to do regular doctors things, since I live between the two, and I hate anything that brings me to the dome so I go the opposite direction, but for chemo and stuff it is all downtown.
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Gilesmt- Ok I'll keep an eye out for you. I seem to practicly live at the Hopsital these's days
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