August 2015 Chemo Group
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Hi, everyone! I've been quiet because I haven't had much to report, but it turns out there's a lot to say. Bear with me.
Dee, I'm right there with you. I'm losing my mind by not lifting! I was a powerlifter until July 6, when I had surgery. . . . Now I'm a cardio queen. Good thing it's temporary; I plan to start back up again as soon as I get the green light from my medical team.
Birdysmom, I'll be finding out for myself re: MM tomorrow, when I get my second infusion. I'm so grateful to live in a state where it's legal; I'm licensed and have found an excellent medical dispensary. I actually got the license to deal with nausea and digestive trouble, but I've found, too, that it's an excellent mood booster. And you're right on that the high-CBD (or less psychotropic) strains don't make for a stupid, high buzz. It just levels things out. THREE CHEERS FOR QUALITY OF LIFE. My MO is on board as long as I don't smoke it (so I eat and vape it). Depending on where you live, you might find a dispensary that caters to non-smokable forms. If you want, I can give you some information on vaping, too—it's much less harsh on the lungs than smoking, and there are some good pens available.
Carolyn62 and Birdysmom: I hear you on bungholeo. Talk about adding insult to injury. My bowels leveled out at about day 10, and I'm hoping for fewer . . . uh . . . problems this time around. I'm going the bland food route this time, instead of being so happy to have an appetite that I eat everything in front of me. (No more pesto for a while.)
Tazbear, that's why I keep my head covered—the sweat. Everyone is all like, "you look so nice bald," but NOPE. I sweat like a beast. Something must absorb it! I hope the weather cools off soon. . . . I am so not a summer person.
Michelle, good luck. That's a real bummer. I've been pushing for Neulasta, too, but the MO just wants to "wait and see." I guess that's fine, but I don't want to 1) get sick, or 2) have treatment delayed. Sending good vibes to you.
JenPam, it's the little things, isn't it? J
Buzz, mine started coming out in a dramatic way exactly 14 days after my first infusion. I buzzed it the next day, and now it seems to have leveled off. . . . My guess is that the rest will go after the next.
Sloan15, YES TO BUMPS. Acne-like bumps, all over my face, chest, and upper back. I blame the steroids (for which I blame so many things); they cleared up about a week ago.
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I, too, have been warned to be careful at the nadir, but my MO tells me that TCHP isn't quite as hard on the bone marrow as AC. That said, it's hard to "be careful at the nadir" when you're a college prof on a mostly-residential campus! Hand sanitizer to the rescue, and I'm very happy with my decision to make everything paperless. Today was the first day of classes, and they went very well—I was transparent about the cancer, and about the fact that my immune system has taken a hit, and all of my students seemed kind and understanding. Here's hoping they don't cough on me when the plague tears through the dorms.
Next infusion in T-minus seventeen hours. Here's hoping it doesn't suck too much the second time around.
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Shaved my head today. Who knew how much I would love my bald head? I expected to feel all emotional, but it feels much more like a badge of honor. Taking my wig on its inaugural outing to pick up kids at school. Not too shabby if I do say so myself! Here's me with hair and with the wig. Second treatment tomorrow. I feel like my side effects from the first one still haven't left me, so here we go again!
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Bluefrog, I'm right there with you tomorrow. Sending good vibes from one chemo chair to another.
The wig looks great!!!
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Hey all. Just wanted to share where I am today after my second AC infusion. Since I'm on dose dense for tnbc my MO has me use Neulasta. Not sure if it's that or the lack of dex but today is fatigue day. Days 3 and 4 were like this for me after the first one, but this time I'm not dehydrated and I'm eating which feels so much better.
My hair is thinning and finally noticeable on the hairbrush. Not sure when I'll cut since it's not annoying yet. I did go for a long hair wig. It's the hair I've always wanted naturally, so might as well get that now.
I was dealing with adult acne before cancer and stopped those meds because of everything I was taking. I started breaking out again and MO gave the ok to just use Aczone again and my face is clearing up again. Otherwise I'm not having any reaction to the steroids, at least not yet.
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For us cake eaters.
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@Kate, I almost didn't recognize the new pic. I am glad to hear that you are feeling better and yes, I sweat like a beast too, if not more.
@JenPam, does the picture above fit? Sorry it didn't have the lasting warm fuzzy feel, but I bet it was good at least the first time around.
All this talk of MM and I wish we were legal. The headaches that now have turned into migraines along with the rip roaring ringing in my ears has really set me on the edge. I go see the MO Friday about it so we can try to combat it. He had me try generic Imitrex yesterday and I took 2 within a 12 hour period and am thinking I will not make it through if this keeps up. Hopefully we can figure something out. And I am documenting EVERY SE and every time I take pain meds and the pain levels so he can see this and it makes my head hurt.
Thanks for all the suggestions, I was also told like Vicki, don't live in a bubble, use the sanitizer and if it sounds like a respiratory issue, then walk away. Probably won't cashier, but will be there for moral support.
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Kate: will be thinking of you tomorrow, too! Your new photo is great.
Rachel
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Birdysman
Can you explain "the buds--broken up into shake--but managed a one hitter instead of
rolling it. I am completely stupid about this stuff but definately going to try it. I am sure
I can get it somewhere :-) Of course they tell me youmust get a certain type. Again, don't know
anything. So glad it is helping you. We need all the help we can to get thru this horrible disease.
I hate the word! Thanks again Rosieo
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Roseio, I live in Colorado so marijuana is legal here. I went to a dispensary and they explained that the medical marijuana is higher in cbd's (which is what we want) and lower in thc (the stuff that makes you high). The goal is to reduce pain and side effects without getting wasted. I do not have a medical card yet but was able to get some fairly high cbd weed on the recreational side of the dispensary.
Pot comes in a lot of different forms these days. The kind we're used to, the actual plant. Thats what I got. Shake is just the plant broken up. You can put just a little in a pipe and smoke it. It doesn't take much to feel the effects!!! Then you can get it in edible forms like candy and cookies. There is a waxy substance that is called shatter (I think) and that is smoked with a special kind of "pen". Then you can get the oil and use a vapor pen to vaporize and inhale it.
They told me there are two main types, Sativa, which is designed to get you high. The other type is indica, which is designed for pain relief. I ended up with a hybrid, because everyone that goes to the recreational side of the dispensary is mostly looking to get high.
To the best of my knowledge this information is correct. The stuff I got seems to help. I don't like feeling high so this isnt too bad.
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Raven
Thanks for all the info. Now what is a hybrid
Thanks
Rosieo
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Good news! My WBC count jumped to 1.55 (JUST made it - the cut off is 1.5) so I got to do my 2nd cycle of AC today. It was close to the wire. Called in an hour to find out and they put me on hold and they told me that the pharmacy ok'ed my chemo so it was a go. I actually said to the girl on the phone - "I'm so happy! Is it weird that I'm so happy to do chemo?"
Did a neupogen info session today too - apparently I am going to have to do the self administered mini injections on days 3-4-5-6-7. I asked about Neulasta and apparently my Province doesn't do Neulasta. Apparently it's even more expensive than the Neupogen here too. So five days of Neupogen. Crossed fingers that I don't have much or any bone pain. May be busting out those MM gummies my brother gave me.
I'm just doing some administrative stuff right now before I get horizontal. Chemo fogginess setting in - no nausea yet but pretty tired.
You guys are awesome. @bluefrog76 - great wig! @KateB79 love the buzzed cut!
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Michelle: so glad another treatment is behind you! Hope you are able to get some rest and enjoy those adorable little ones.
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Sloan, I'm using the Biotene only. The nurse educator also stressed to get the "dry mouth" type. I also got the toothpaste. I am rinsing probably 5-7 times a day. I'm really glad I decided to try it. It is minty flavored and refreshing. I have a strong gag reflex and was worried about using the salt solution. I bought a bottle at CVS, but later found it was almost half as much at Target, so I'll go there for my next bottle.
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Michelle888, neupogen has an assistance program for costs not covered by insurance. Ask them (or the pharmacy) about it. It is NOT income based. My insurance paid for much of the cost, but the assistance program covered all of the rest except for about $25. Get my first shipment Friday. Sigh.
Edited to add: never mind, just realized you are in Canada...I think the assistance program is only in the states. But leaving this post here in case it is helpful to others.
Hope you do well after this round!
Octogirl
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Tam-iam, thank you. I'm going to go check right now that I have the dry mouth kind of Biotene!
Regarding MM: RavenSally gave great descriptions. I'm a retired health educator for high school kids and young adults, so I'll add a couple things. Kids in our area call the waxy stuff "wax" --real original. I wouldn't recommend wax or wax pens for pain treatment; it's more psychoactive for getting high. Also, vape pens and wax pens are a little different since wax needs a little bit higher temp. Someone on this site talked about using pens for vaping MM. This would be more like the electronic cig type of vape pen for MJ: no fire, no smoke, no MJ smell from the high end ones. Many MJ vape pens use hash oil which has more THC in it because most people use them recreationally. Europeans are more likely to use hash rather than the MJ buds or leaves. I agree with RavenSally that you go into a MM shop and ask. What you are looking for is MM with a higher cannabidiol level (CBD) for pain. A hybrid has both indica (higher in cannabidiol) and sativa (higher in THC), and many people use this to "feel good" in both reduced pain and a slight high. If you have mental illness, it's probably best not to use marijuana as some studies show it can make schizophrenia worse (but doesn't cause mental illness if you don't have it). I don't use recreationally nor medically, but I saw how much my mom suffered with bone pain and would not hesitate to get it for a loved one or for myself if I needed it (or if my child had a seizure disorder helped by MM). My state allows for MM. It's weird how some people are like, "Oh, NO! It's marijuana!" and then take hydrocodone prescribed by the doctor...
Kate and Bluefrog--great pics!
Michelle888--remember, no hugs, no fresh salads/foods, wash hands, avoid crowds until you know those WBC counts have gone back up after chemo and neupogen shots. I'm sure SIO has some good advice on this, too.
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I have been lurking the past few days--day 6 after infusion seems to be my day from hell. I do okay with the steroids and then go downhill till I crash and burn on day 6. Today has been better but I did nothing except rest and *try* to hydrate. Really the second cycle has been better overall, but my spirit has suffered more--trying to work up the courage to do this 4 more times.
It's after midnight here so it's my 35th birthday. I will be celebrating with a Herceptin infusion this afternoon--and hopefully a full liter of fluids. A few months ago I was so worried about radiation from a mammogram I was determined to convince my GYN to wait till I turned 40 for my baseline. Of course a palpable tumor showed up first. Seems so silly now. Mammograms, CT, MRI, more mammograms... And so much more to look forward to.
Still, you ladies are a lifeline! I love the co-suffering, the support/advice, the laughs, and the pics. I do not live in a MM state, but I know people who know people (who doesn't?)--but I bet it would be thc-heavy... Thankful for the education I got tonight!0 -
Happy birthday Musogirl! Hope you have a special day.
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I'm surprised many of you have to "wait & see" before getting the Neupogen/ Neulasta. Mine was ordered when my dr put in the chemo request. I'm also quite shocked at how much it costs when I got the statement (& I paid $25 each round). $5 a shot, just a work week worth of Starbucks if you think about it. I wonder how much the chemo itself might have cost (unfortunately it isn't even on the statement)
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Hello all - have not had a lot of time to spend here. I am a school teacher and school started this week in my district. So I am now working full time. It was nice getting those first two chemo treatments done in the summer when I didn't have to deal with working. Some people thought I might take sick leave till I was done with my chemo but I really feel well enough to work. I am through my second treatment now and it was similar to the first. The first week I feel off - not great but not awful. The lack of sleep is the worst side effect for me. The second and third week I feel fine. I saw my MO the other day. He is cutting my steroids in half so hopefully that will solve my sleep problem next round. My iron levels are low but he doesn't want to give me iron supplements since they promote hair growth and with the penguin caps, that would stimulate my hair cells and my hair would fall out. I have managed to keep my hair so far thanks to the penguin caps. It has been a great relief to me to have my hair as I return to work. My energy level has been good but I really think it is due to all the exercise I do. I think it helps flush those chemicals out of my system faster. So keep moving ladies! It has really helped my physically and mentally. There has been some difference of opinion whether or not I need radiation following chemo and we finally have settled on an answer. I am going to have radiation. I want this cancer gone , never to return.
I got my insurance statement. My chemo costs $6000 a pop! Insurance covers $4000. I owe nothing. My insurance plan must be shaking their head at my file. Here's a gal that has cost us nothing for the last 20 years and now costing us a fortune. Oh well - that's why we have insurance.
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I had to go to a meeting at my daughter's high school last night, and in addition to wearing a cap on my bald little head, I wore a full face mask.
I couldn't risk being around all those lovely germy teens (school enrollment is more than 2,500 students), and I'm glad I was cautious as there was a lot of sneezing going on. I have my 3rd AC treatment this afternoon and don't intend to put it off.motherofmany, nice to meet you! How many children do you have?
Sloan, love the guinea pig imagery!I prepare a bottle of the baking soda/salt/water rinse and keep it in the fridge, and I swig from it a few times a day. I use the Biotene mouthwash two to three times a day. So far so good in the mouth department...no sores or problems.
Kate, look how cute you are in your siggy pic!
Bluefrog, love the new 'do...sassy!
michelle, other than the Neupogen being annoying b/c of the brief pain from injection (I'm a wimp), I've had no SEs from it—and my counts have stayed consistently high.
taz…so funny…I just can't stop eating cake!!
Happy Birthday musosgirl!
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And just because I can't stop thinking about that delicious cake...
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Well I did it....the head has been shaved! I never thought I would have to be doing it at day 14 after my first treatment. I could only stand my hair falling out for 2 days..I was like a shedding dog. I was continually picking hair off of me, wiping it off every surface in my house, cleaning it out of my vehicle. That was freaking me out. I was scared to cook a meal it was failing out so bad. So my girlfriends came over, each with a bottle of wine and we had a party. I feel like my brain is bruised today. Those red wine brain cramps kill. I needed some liquid courage. It was emotional, but being surrounded by my friends and family was empowering. So I will be rocking my wigs and caps and taking control of my life. Cancer , I will not let you rob me of my joy and happiness. You have taken far too much from me already. My hair is the last thing you can take.
So I will be heading to the gym rocking my ball cap. Lifting some weights and feeling some good pain. My heart needs a good workout to help repair the part that broke when my hair was swept into the garbage can.
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Hello chemo-pals!
Not much to report, just wanted to say how much I appreciate hanging out with you here when I feel lonely on the cancer trail.
Oh there is one thing, my Interferon and syringes are supposed to come in the mail today. Weird anticipating giving myself shots for the next year. I used to be afraid of needles until I started getting acupuncture, now they don't bother me as much, but actually injecting something into my skin is a whole different thing.
@Michelle, glad to hear it's not going to cost you an arm and a leg. I know what you mean about being glad you are getting chemo. I really like the people I am with in the chemo room, so that's fun to anticipate, actually. But to be honest I wouldn't be crushed if my MO said I could skip a week.
@MusosGirl, happy birthday! *and many more* (boy does that have a new meaning for me now).
@DeeRatz, good for you!
@Sloan and @RavenSally, thank you for the MM education. Do you think it would help with migraines and nausea? I'd do just about anything to avoid another "bad day" on the weekend, and I too live in a legal state, so in theory I could walk down the street and just buy some, if I could get the high-CBD stuff in a store. I am neither a smoker nor an experienced MJ user, so I wouldn't want to smoke it, but I do love baking.
(Wait till I tell my sister what I'm baking, haha! We're always trading recipes ... that would be an unusual one!)@Suzanne, glad the penguin caps are working for you. So far I haven't lost any more hair than I usually do, but I'll be on Day 14 and treatment #3 tomorrow, so we'll see what happens after that.
@TazBear, did the Imitrex work for you? If it did, I might be able to ask my MO for a prescription for it tomorrow. If what I'm experiencing isn't an actual migraine, it sure does a good impression of one. Formerly I'd get maybe two migraines a year, so having one every week, with no relief but sleep, is not something to look forward to.
@JenPam, smart of you to wear a mask to your daughter's high school gathering. I'll have to get one just in case my WBC goes down.
@BlueFrog, great job matching your wig to your real hair, it looks fantastic!
@Barcelonagirl, are you in Barca? We were there 5 years ago and I can't wait to go back. That IS something to look forward to, when all this is over.
Have a beautiful Thursday!
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And ... my avatar is me now instead of Ratatouille. I have no idea what was happening with my bangs there. At some point I'll take another one that looks better. Perhaps when my hair's all in pigtails waiting to be cut off for the wig, LOL. (Husband says he wants to document the haircut/head shave event!)
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How nice to log on to a birthday party. Hope it's going well, @Musogirl!
I was moaning yesterday because I was tired but today am fine and agree with @Suzanne50 that exercise really helps stave off tiredness (except on the rotten days when it doesn't). By the way Suzanne, melatonin (3 mg at bedtime, recommended by someone on this thread) worked really well for me when I had insomnia problems.
Tomorrow I go for my 5th weekly chemo session but I'm not scared of it any more. Took a while... I have a lovely nurse called Suzy and the chemo unit has a tradition of baking a 'cake of the day' for those who are around at tea-time. Wonder what it will be tomorrow?
No marijuana for me - tried it at college and saw little green men climbing up the wall...
Stay chilled everyone. Bad days are followed by less bad days.
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Mom2, the imitrex, I think worked only the first day for me. I had to take 2 within 12 hours of getting it and it seems to have lessen for me. I do have an appt tomorrow with MO to try to figure out what to do. I'm tired of the constant pain and ringing.
Happy Birthday Muso. Hope it is fabulous.
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@musogirl, happy birthday! Herceptin is one hell of a way to celebrate. I hope you get to do something fun, too.
Thanks to all for the compliments on my bald dome! I can't take much credit for the shape of my head (thanks, mom and dad), but I'm pleasantly surprised that it doesn't look too bumpy or lopsided.
Second infusion today was much, much better than the first. Four hours instead of seven; everything went smoothly; I'm not quite as much of a nutjob as I was last time, given that they cut the dex in half. I DID, however, get dex in my premeds this time (didn't last time), and discovered a new and somewhat unfortunate SE, which the nurses call 'burning crotch syndrome.' It was the strangest sensation I've ever experienced--I was like, do I have to go to the bathroom, or is this something else? It felt like fire ants in my pants! I leapt out of the chair and the nurse reassured me that BCS is normal; then she slowed down the drip and it went away within five minutes. But, man, what a trip that was.
Re: neulasta/neupogen . . . Here's what I discussed with the NP today (who is fantastic; I really, really like her, and she's less intimidating than my MO. I mean 'intimidating' as a compliment, in a lot of ways, FYI): the reason why I'm not getting any shots, as of right now, is threefold. One, my WBC counts bounced back to "excellent" as of today, and she says they'd rather not give shots when they're not needed, due to the side effects (especially bone pain, which taxotere is perfectly capable of causing on its own). Two, because I'm on an every-three-weeks regimen, as opposed to a dose-dense regimen, they prefer to be conservative. She said that in some areas of the country, neu* is just a matter of course, but not here. Three, cost. Each shot is $30k (I'd pay $25), and they become concerned about various insurance companies' lifetime maximums, especially if (god forbid) I were to have a recurrence and need even more treatment. So, I guess what it boils down to is the practice's preference and whether or not our counts are good enough to continue with chemo. I have my fingers crossed that I can get through all of them without shots!
Re: MM. I'm absolutely, totally on board and happy to answer any and all questions anyone has. There is a difference between 'street' pot and medical pot; I highly (no pun intended) recommend a website called Leafly for research. The high-THC strains can be excellent for reducing depression and anxiety, for appetite and nausea, and for pain, though they will get one 'higher' than the high-CBD strains, which are, in my opinion, far superior for what most of us experience. The problem is that those strains can be hard to find (my local dispensary is completely sold out), especially in states where MM isn't legal.
Re: headwear. Yesterday I wore a hat for the first day back to full-time teaching, and it was okay—I'm just not quite confident enough yet to go for all-out bald in front of students. I'm not counting it out, though, especially if this heat continues for much longer. Bring on the cooler temps! Today I wore a bandanna and am pretty happy with it; I might get some more. It covers my head, is 100% cotton and completely washable, is soft, and absorbs sweat, should sweating occur. In the winter, I'll fall back on slouch beanies, but as long as this summer weather continues, I think I've found my go-to head covering.
Here's a question: my insurance company will pay the $3000 for BRCA testing, but not the $4500 for the MyRisk profile. They tell me that I can appeal—any advice for getting the appeal through on the first try? Both my surgeon and MO have recommended MyRisk due to family history of bowel, blood, lung, bladder, and prostate cancer (we're a tough group, lemme tell you), and it seems to me that I could run a simple cost-benefit analysis for them to show how much money we could save in the long term by spending an extra $1500 up front. Any tips?
I was up most of the night due to dex and a crazy thunderstorm, and the sleep-deprivation combined with the roid rage is not a pretty sight to behold, so I'm hitting the couch for a power nap. I hope we all have a wonderful weekend!
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Wow, thank you ladies! My day started off rough--I waited too long to go in for fluids. But I mustered through, got a full liter at my infusion, and hope to enjoy the rest of my evening!
Hoping all of you suffering with pain find relief soon. We have all survived at least one infusion, many of us two, and together we will trudge through. I have never been in such a rush for Christmas to get here! Talk about Happy Holidays!0 -
I just finished my second round of AC. It was much faster than the first time: out the door in 2.5 hours (just the infusion part of my day). My wbc was back up today (yay!) so I was able to have my acupuncture session. I'm hoping it will make a difference in the headache. A good friend came with me today, so we just chatted through the whole thing. I also had a visit from the center's social worker to see how I'm doing and to get information on different services available. Nice.
Happy birthday, MusosGirl. I hope you are getting to do something fun.
DeeRatz, I love that your friends came together to help you shave. I have a feeling I'll be shaving mine off this weekend. We'll be camping with friends, so it will be a fun atomosphere. We are bringing the clippers and generator.
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