August 2015 Chemo Group
Comments
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Experimenting to see if medical marijuana "MM" makes a difference;
Good thing in trying this in a legal area is that MM doesn't make me feel high or stupid like the street stuff! So far, its been 5 full days since 2nd chemo infusion. The difference between not taking MM for first round and taking MM is very noticeable and encouraging.
The doc also slightly reduced my Carboplatin dose and removed the nausia drug "Aloxi" (a big constipator), so there are these factors to consider.
Most significant difference is that I didn't dramatically loose weight and wasn't severely messed up in lower GI (first round gave me painful constipation, bleeding rectal tear, and alternating with diarrhea... My butthole is STILL sore from that!) Going to the head is almost normal, just occasional bloaty feeling and enough gas to rival the Goodyear blimp.
I don't feel as uncomfortably dizzy or tippy this time around, and the hot flash and chills-but-no-fever problem is far more mild. Was even able to work longer and was actually CHEERFUL this time around...Bonus- MM a mood helper too!
Still get fatigue and have that heavy-sore feeling in limbs. The itchy rash on chest/neck area not as extreme this time. Still contend with low grade headaches and like first time, swallowing is wierd, like there's a lump in throat. OK, so along with the slight change in my chemo meds, there is something positive to MM. I'm going to rustle up my landlubbing hippie buddies and stick to it. Quality of life much better! Tumor still shrinking, clinical studies on MM are encouraging.
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Is the MM you are taking a pill or how are you taking it . I am very much hoping to be able to take this
too as I have only heard good things about how it helps with se's
Appreciate your reply
Rosieo
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Went for pre treatment blood work today and just got the call that my white blood cell count is too low for chemo tomorrow (he said it was under 1, and they won't let me unless it's over 1.5...)
UGH. I'm going in for blood work tomorrow morning to see if it bumps up but if not I will be delayed and I'll have to do neupogen shots for five days started day three post chemo. Anyone else doing Neupogen? Not sure why they aren't putting me on Nuelasta. I'll ask tomorrow.
I knew there would be road bumps in this journey but just a little disappointed at the moment. Nothing I can do. Hope my count magically increases by tomorrow.
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Michelle: that's so annoying and frustrating. I'm sorry. Hope numbers change overnight. I know how much you'd like to get another treatment out of the way. My MO automatically does Neulasta 24 hours after chemo; not sure what triggers that protocol.
Rachel
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My wbc count was 1.8 today. I have two weeks until my next treatment, so hopefully it will go up by then. Next round I'll have the Nuelasta.
I'm getting a rash on my chest and pimples on my face. Bungholeo is very sore, too. My skin has always been my weak area.0 -
Sorry...I may be in the same situation this Friday if my w.b.c. hasn't gone up.
I do NOT want to postpone treatment!!!
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I think "bungholeo" is my new favorite word.
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feeling a tad cranky today. I feel perfectly healthy but I have this fantastic bald spot on my noggin. I got my hair cut short with the intention of shaving it off prior to walking around looking like something from the Middle Ages (think Game of Thrones - The Hound) but my hairdresser was unable to take me. He was off today and I see him tomorrow at noon. I have to get through one more shower and a trip to the oncologist before that. I have a long scar that runs all the way around my left ear and down to my hairline from when I had a benign brain tumour removed in 2010. To make it all the more fun, We have tickets to the Jays game tomorrow night. It's Nearly sold out. That's just awesome. Maybe I'll just stay home. My husband wants me to wear a Blue Jays cap. I haven't had much practice with the scarves so that may be the result. Oh well. Let's see what tomorrow brings. 😤
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Mollie, I wear bandanas. My head unfortunately sweats too much as far as I am concerned and now that I have super short hair, there is no where for the sweat to go. Hope you figure something out and still go.
@Carolyn, Never heard the word, bungholeo, but I love it.
I wish I was better at being able to keep with everyone, but unfortunately that part of multi-tasking is just not in the cards for me. Hope everyone had a better day today.
QUESTION Does anyone know if there is still a nadir period even if you are given the neulasta shot the day after tx? WE have a garage sale this weekend and it will be a week since tx for me. I am still asking the nurse, but I have been bugging them like crazy the last couple of days.
Still had the intense migraine headaches, in fact, almost went to ER last night it hurt so bad. Took ibuprofen and an Antivan and was able to relax enough to sleep. MO thinks it might be the Neulasta and since nothing over the counter is working, is trying Imitrex with me. I had to take one this afternoon, I still had a dull ache, but was TONS better than last night and this morning when I woke up. Have a friend that gets really bad migraines and she said what she does to fight it off if she can early enough is to take 4 ibuprofen and a controlled release muscle relaxant. I might be offering this alternative, if it gets out of hand again. I don't want another weekend of the headaches.
Well, as much as I would like to write, more, I must shut off the mind and go to sleep since my girls have school in the morning and I get up with them. Fortunately, I can go back to bed once the wonderful school bus takes them away.
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Thanks everyone. I have blood work tomorrow first thing and we'll see if I'm allowed to proceed. I must say doing some research on low WBC and the Neupogen shots is scaring the bejeezus out of me and I don't scare easily.
Also in the middle of finding out if my medical plan will cover the costs (I think it should be 100% covered, but not having the official go ahead is scary) as I have found out that it's so expensive. Thousands of dollars for each cycle? I have an amazing health plan, but it angers me that it costs so much. I feel for those who can't afford it. Do they just not get the drugs? I went onto the Cancer Agency website and it specifically says that they don't cover neupogen as it does not directly fight cancer...but I'm not allowed chemo unless I take it <insert waving fist here>
Anyway. If my counts come back crappy, I have resorted to the fact that I will need these boosting drugs and the potential bone pain that comes along with it. This is just another minor bump in the road. It just sucks.
Thanks for letting me rant.
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Bluefrog, you rock!! I love your inspirational story.
Sio, I'm glad you're okay. I'll be better about checking my temp!
Gooseberry, that sounds terrible about the bone pain. I take Claritin every day just like I did prior to cancer, since I have seasonal allergies anyway. Is it an option for you to take Claritin and not stop it?
Taz, if I were you, I would NOT be a cashier while going through chemo. I can't imagine anything less sanitary, and that's not just my OCD self talking.
sptmbrsunrise, welcome! Nice to meet you.
DeeRatz, nice to meet you as well! I'm also 45, and I have two daughters close in ages to yours--mine are 17 and 21 (plus I also have a 21-year-old son and a 29-year-old daughter).
knitnpurl, how encouraging to hear that the chemo is working to shrink the tumor!
Birdysmom, I'd love to know more about your use of medical marijuana as time goes by. It's legal in D.C., and I could likely get a Rx for it from my doctor (I live 20 minutes outside D.C.); in Maryland, dispensaries are supposed to be up by the middle of 2016, which is past the time I'll be doing chemo treatments--and only liquid and smokable forms will be permitted. I've never tried pot & have no interest in smoking anything, but I'm interested in edibles. I've put it out to people I know that I'm looking into finding edible MM & I hope that will pan out.
michelle, sorry to hear about the chemo delay. If it's any consolation, I take Neupogen (injections on days 3-9 after each AC infusion), and it's been pretty painless.
Employment: I continue to work, but because I'm my own boss, I can play it by ear. I have typically slept during the day & am following that routine during treatment for the most part. I might work in the office from 11 p.m. to 6:00 a.m. or something similar. If I'm too ill, I put in sporadic hours throughout the day.
Itchiness: I hate being itchy! So far so good, except the mosquitoes around here have been awful & a few of them attacked my feet, despite the bug spray I use prior to my outings. I have a picking disorder (compulsive skin picking), so you can imagine it's been difficult/nearly impossible not to scratch everything open. It's not good having that condition when you're going through chemo...I have open sores in a few places, which I know is bad, but it's not as if I can suddenly be cured of a lifelong condition just because I've got cancer.
Nadir: If it makes anyone feel better, I tend to feel awesome right about that time (7-10 days post-infusion). It sucks because I know I have to stay inside or at least away from crowds, yet I feel bouncy and ready to go out on date nights. I realize my counts are at their lowest so I do what I'm told, but I have to sit on my hands.
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I know my posts are so long that eyes probably glaze over
so I thought I'd put something fun out there...after my bloodwork yesterday afternoon, I went to White House Black Market (my favorite store) and spent far too much money on really cute clothes. It's the first time I've gone shopping post-BMX. I don't have silicone foobs yet, but I had on my microbead foobs and clothes looked normal! I bought the most beautiful camel-colored leather jacket...and some leopard-print heels...and some necklaces...and a pencil skirt with a cute slit...and some tops...and some dresses...LOL! I'm planning on a date night with my DH on Saturday and damn it all, I'd better be feeling good. These clothes aren't going to be allowed to wilt in the closet.0 -
I haven't posted in a while, but I've been keeping up with the boards daily. I think I learn more here than from my MO. In fact, if it weren't for my incredible nurse navigator, I would consider changing MO's.
I had Neulasta, but my numbers still fell on day 7 after my first round of A/C. I called the nurse and she had me come in for a bag of fluids with zofran and decatron. I felt SOOO much better the next day. But then that night, I experienced some serious leg pain and pain in my tail bone that felt identical to back labor. I took a percocet and got in the hottest bath I could stand and it eased off in about 1/2 hour. I was sore the next day but the real pain didn't come back.
Birdysmom - I'm so curious of how well MM works for you. I live in Georgia, and it was recently passed, but from my research, it seems almost impossible to actually get it
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Just checking in with y'all. So much struggle! I admire all of your fortitude going through this. There will be a light at the end of the tunnel, soon.
@JenPam, thank you for adding the bit about shopping, I'm not much of a clotheshorse but still it's fun to vicariously think of buying something other than cancer caps & the like.
@Michelle I'm so bummed that you're having to get neupogen, and especially that it won't be covered by your insurance. I thought they would cover everything?
@Tazbear, I know you really want to do the garage sale cashiering, but just handling money alone would expose you to a lot of grime and germs, plus you'd have to be up close & personal with every person who wants to buy something. And some of them will be kids, and school just started ... just so many avenues for a bug to reach you when you're vulnerable. Maybe you could take on a different role that wouldn't demand so much contact with stuff that could make you sick?
@Boopboopadoop (love the name btw), I am getting weekly low-dose regimen rather than every three weeks dose-dense regimen, like most everybody else here. But that said, my experience the first two weeks has been much like you described - fine the day of, sick as a dog a few days after, then fine again.
@Molliefish, go ahead and enjoy the game! Wear a cap, focus on having fun. Don't let cancer win, even one little skirmish like a ball game. I'm sure you'll be fine.
In other news, for those interested in the interferon aspect of my treatment plan: I found out the cost of the interferon today and I'm only having to pay 20% of the cost, which ends up being less than $100. Not terrible. When my husband used it with the same MO more than a decade ago, each month's supply cost $1000, and his insurance wouldn't cover any of it. Once I get it, I can tell you all more about what's involved and exactly what kind of interferon it is. My husband told me some funny stories about when he was on it. Interferon boosts your immune system like crazy, and he said that he felt sort of superhuman - he didn't even catch colds, and one day he actually cut his finger in the kitchen in the morning, and by the time he went to bed it was completely healed. Like the X-men or something. I don't remember him ever complaining of bone pain, but he did feel exhausted for the first couple of weeks, I remember that clearly because it was scarily reminiscent of how he was feeling before he was diagnosed. So the next couple of weeks might be not so much fun for me, but eventually things will even out.
Oh and I am up super late, back to the old pattern, trying to fix a bug and decided to take a break to chat with you all before I give up and go to sleep! I had no idea it was 2:00AM. Ha!
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Good morning on this side 'o timeline! for Rosio's question and others who are interested: The medical marijuana (MM) I took was smoked form. (Cough!) I do not know how to dose the edible stuff and, er...ehem, have a familiarity with smoking it (waaaay back when in college!). The buds I'd obtained were broken up into shake, but I managed to use it in a one-hitter instead of rolling it. Easiest to dose this way.
I'm not a druggie and was always reluctant to even take an aspirin, but i'm convinced the MM is helping. My naturally protective mom really noticed a difference too and it's funny seeing her, a total straight arrow, clambering to get me more weed!
Cashiers! Here's a kicker- doc doesn't want me exposed to working on "dirty" engines & associated chemicals or straining myself, so I've been working 30hrs a week light duty job at the ship's store- as a cashier! Really? What's less "dirty?"
I'll report when I get blood counts in a few days, maybe the MM helps that too...or at least it's helping stomach so can eat & get nutrients.
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I love having other late-night people to chat with!
Hoping to go to bed soon here on the east coast. I ate a lot of cake, which felt good at the time, but then it...well, it vacated my system in a rapid fashion, and I'm reminded that I should eat healthier foods. 0 -
I have a hair question. When you started noticing it thinning - how long till you had to shave it or it looked too bad to go out in public?
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Tazbear - I agree with buzz! the only time I got really nauseous was when I had a migraine after treatment. They gave me a new anti-nausea med in my IV drip (because a side effect of the one I was on, was migraines...like that makes sense) AND had me come back the next day for a bag of fluids. SOOO much better!! Hopefully that will help you, too!
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Buzz: my hair started falling out in clumps two weeks to the day of my first chemo. I was determined to hold onto enough of it for the first day of my kids school yesterday. I put what was left in a ponytail. It is a clumped, matted, itchy mess. I cannot wait to have it shaved off today which, psychologically is good for me. Now it's something I want to get rid of, not preserve, and the bald head will be a relief.
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buzz, my hair fell out before it got thin. I had it cut short nearly two weeks to the day of starting AC, thinking I could have short hair for at least a week. Nope--by the very next day, I was pulling out clumps in the shower. At that point, I had my husband buzz it off. Two days after that, I had to shave it, because even the short hairs were falling out.
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- i just started chemo 8/27/15 and I like you have a small pain and nausea treshhold. I just keep thinking about all the other strong women that have made it through the treatments. It takes bravery to go get the treatments and know they are going to make you sick. I also have thought about saying screw it and going on with my life but I think about my loved ones and I will be brave for them. If you think about it as only being a season in our life...it's easier to handle. Just like pregnancy...it won't last forever.
"god only gives us what we can handle"
0 - i just started chemo 8/27/15 and I like you have a small pain and nausea treshhold. I just keep thinking about all the other strong women that have made it through the treatments. It takes bravery to go get the treatments and know they are going to make you sick. I also have thought about saying screw it and going on with my life but I think about my loved ones and I will be brave for them. If you think about it as only being a season in our life...it's easier to handle. Just like pregnancy...it won't last forever.
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Tazbear: I am getting the Neulasta shot, and my wbc was still low one week after tx. The nurse told me that Neulasta helps your wbc recover, but that it still dips around day 7-10. She told me I don't have to live in a bubble those days, but use lots of hand sanitizer and stay away from sick people. Personally, I would skip working at a garage sale.
I've been following the board, but haven't had a chance to post. Round 2 of AC is tomorrow. SE were minimal for round 1, so I am hoping for the same this time. I start a strength class put on by my cancer center today. I had an initial assessment last Friday, and it felt so good to workout with weights again. I am noticing that I can pluck stray hairs from my head with no resistance, but there still isn't a visible difference. I am sure the shave is coming soon.
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@Buzz - That's a great question and I've been wondering the same.
My hair started coming out in clumps on day 15. It stopped coming out at about day 22. I've lost approximately 60%. I'm not shaving or cutting it yet as there's still enough hanging out the little caps I wear to make it look like I have hair. I wouldn't go out in public with no covering, but I'm sure people wonder why I'm wearing a hat when it's 90 degrees. I've been told that AC chemo results in complete loss of scalp hair.
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I got Neulasta and was warned to be careful at the nadir. I did, though I wasn't feeling different from most of the rest of the cycle.
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@Buzz I buzzed (no pun intended) my hair 21 days after my first treatment. It was LIBERATING! So great to take control of something at that time. Of course, it didn't take long for me to rub off the fuzz on the back of my head, and have a bald spot like a baby! I found a great wig (did not spend the $ on a real hair wig, as I wasn't planning to wear it longer than 4 mos) and forged on through. I was surprised at how cold my head got at night in the winter. Find a warm skull cap that stays on but is not too tight! And plan something to look forward to after every few treatments...having mini goals helped to break things up.
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TIRED. That's what I am.
I was good for two days and did stuff, now I'm flat on my back.
End of moan.
But we will all get through this :-).
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mom2aboy - I think my neupogen is covered (haven't gotten the official say so but hoping to clear that up soon). I was just angry that it costs so much and what happens to people that don't have a great health plan etc. I think there are some societies that can help out. Just blown away at the cost.
Went to get my blood work done this morning. Waiting to get the call now...ridiculous how much I want chemo today!
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"Tired" is a good time to rest if possible! I hope everyone has a schedule that can accommodate down time.
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Oh sure, agree we should look at it and share it, but not pin our hopes on it!
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I just bought the Biotene mouthwash and toothpaste. I'll have my 2nd session of TC on Tuesday. After the first session I only used the baking soda and salt rinse. But, since my WBC count plunged after session 1, too--I had to have the Neupogen shots-- I figured I needed to start being more careful. How often are you ladies using the mouthwash? Are you still using the salt rinse in addition to the Biotene?
Also, did anyone else get bumps on their face and chest from the chemo or the steroid? The NP thinks it's the steroid, and she's going to lower the steroid dose. This won't give me nausea, will it? Why exactly do they give us the steroid?
Birdysmom, hilarious story about your mom and the MM. Did the MM help with the headaches by any chance? Like I said before, the guy next to me swore by the MJ Gummy Bears...
I'm actually loving my 1" pixie. I can shower in 2 min and be ready now in 10 min! Wow! Unfortunately, I put some of my husband's Crew pomade on today for that shiny groomed look, and my hands were covered in hair. Yikes. We are going on a mini vacation tomorrow, and I don't know if it's good or bad to get out of town and be forced to deal with hair loss on vacation without sulking. I'm also wondering if the hotel staff is going to think someone tried to kill a guinea pig in the pillow case....
Oh, one more question: My WBC count dropped to 1 after my first session, and then I got the Neupogen. It went up to 12, and by Friday it was down to 8. For those of you who had Neupogen, does it continue to drop or does it level off once it goes higher? I just don't want it to be too low on Tuesday for my treatment. Like Michelle said, it's weird when you have to think, "Oh, no! I might not be able to have chemo!"
Thanks for your help and insight everyone. It's priceless to have all of you as chemo buddies and resources!
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