August 2015 Chemo Group
Comments
-
Bunnybumps, you look amazing!!
Alice, I feel tired and queasy around day 3 and continue to experience fatigue for days 4-7, after which I rebound. My 4th AC is in two days, and right now I have tons of energy.
0 -
@KateB, I envy you being able to take a multivitamin, my naturopath has even taken me off of them. Strange feeling for me to be taking so many pharma drugs and none of my usual natural supplements! I just took two 10mg melatonin for the first time and am expecting to pass out any minute, lol.
I am wishing all of you well tonight. Stay strong, I know you will! @alice12, we are all with you. It's rough but we are getting through it together.
My biggest struggle the past two days? (Well other than than the surprise projectile hurling, lol.) Heartburn. Worst ever. I'm sure I've seen notes from others having this problem. My hubby is encouraging me to try apple cider vinegar, although it seems so counterintuitive to drink something acidic to settle an acid stomach! I realized today that I can't continue with pepto bismol because it's a kind of aspirin, which is a blood thinner, and my naturopath took me off of fish oil because of its blood thinning properties. So, heartburn and/or acv are in my future tomorrow.
One more thing ... my hair is coming out in earnest now. Not in clumps necessarily, just lots more hair than usual. Pretty much a hairball the size of a large mouse emerged from my hairbrush this morning. Scary! So I messaged my salon friend. But ... I'm starting to waiver on the idea of having a wig made from it now. I'm thinking of having her cut it into a cute style that resembles one of the really nice monofilament wigs on headcoverings.com instead, and then buy the wig and switch to it when my hair loss gets too obvious. It would still do the job of (kindly, I hope) fooling my folks, without my having to worry too much about the timing of everything. Any advice from the bewigged among us? I'm really not sure the best path to take here.
Have a good night everyone.
0 -
Thanks everyone, for the compliments! It was a fun night and I really am enjoying the new look.
Vickirides, I called on a friend who shaved his head to support his nine-year-old son (sadly passed away this year from brain cancer) and has kept it that way. His excellent advice was to cut the hair down first with scissors if necessary, then use a number two shaver blade, then a number one, then 1/16 if you have it. After that get the scalp and hair as warm and wet as possible. You may choose to do this in the shower with a mirror, but we did at the sink with a basin of warm water (just like dad!) Use a man's razor slowly (preferably a five blade with a new blade installed) across the head in short strokes. Bear down gradually to get the feel of how much is too much so you don't nick yourself. We found that going with and against the grain and doing small areas at a time provided the best results. You will have to do this a few times, be patient! To get the stubborn spots smooth, check to see if the razor has a single straight blade on one end and carefully use that end to scrape the stubborn stubble. This process takes a while, and you have to keep rinsing and redoing, but it's worth it as you'll have no stubble for a while and head smooth as baby toes!0 -
mom2aboy, let us know if/how the ACV works. I drank the kool-aid and am now taking Pepcid every 12 hours for heartburn and its accompanying stomachache. . . . I know it's short-term, but I'd just as soon not mess with my calcium/magnesium balance any more than I have to. I've used ACV in the past for such things, and can't for the life of me think of why I defaulted to pharmaceuticals.
Oh, wait. Yes I can. Haha.
I think the idea to have your hair cut to resemble your new wig is an excellent one. Maybe your stylist can also trim the wig if it's necessary?
I'm experimenting and wearing my wig today. I thought I would be "brave" (whatever that means) and just go bald or wear hats, but it's nice to go out once in a while and not get sideways looks. People are afraid of cancer--hell, I was and am afraid of cancer--and I get it. That said, I'm not entirely comfortable in the wig, either, mainly because the style isn't perfect and the color is a little darker and redder than my natural color. But it's a loaner and it cost me nothing, so it's worth seeing what a day with it on is like.
I keep getting all of these "you're so beautiful" comments when people see my bald head. My BFF has even said, and I quote, "I don't feel sorry for bald people, but I do feel sorry for people who are obviously wearing a wig," and I wasn't sure how to respond. I know folks mean well, and intentions matter to me, but I can't help but feeling a little bit rankled. I mean, most of these people never told me I was beautiful before, you know? This is all aside from the fact that, in my humble opinion, beauty has less to do with hair and makeup and clothes and more to do with what's inside. . . . I don't know. Again: I know that all of it stems from good intentions, but it just serves to make me feel weirder and weirder as time passes. Why do people have such strong opinions about my stupid bald dome and/or my stupid wig? Sigh.
Just venting to ladies who understand.
I'm still wearing hats/kerchiefs to teach. I get too hot in the classroom to do otherwise, and I'm pretty sure my students don't give two shakes what I look like.
0 -
kateB79: I had terrible heart burn after 1st treatment. My doctor prescribed "Ranitidine" and it completely took all of this away.
Also ladies thank you so much for all the information about the 0.6 neutrophils count I have. You have really educated me about what to expect. Thank you.
0 -
mom2aboy I had briefly entertained cutting my hair into a short cut but decided against it and just went from super long to 3/8 inch buzz then to a short as I could buzz, then finally to a shaved head. The fall out was still sort of traumatizing (ok maybe that isn't the right word) at 3/8 inch.
I do have a wig and I like it and I think it looks great but I find that I'm just wearing scarves or just bald a majority of the time. Mind you I'm not working and just mainly at home. I do have another wig coming in the mail which is shorter and maybe more manageable. Thinking that I will use the wigs more as it gets colder as bald is beautiful, but also freaking cold!!
kateB79 wow that was a totally insensitive thing for your friend to say to you! I do like your freebie wig though but I didn't know what your bio hair looked like pre cancer (I've been reading a bunch of wig blogs - looking for real life pics of wigs and that's what people call their natural hair haha)
0 -
Thank you, Bunnybumps. I will give that a try. I don't know why I am so freaked out about taking a razor to my head.
Yesterday a complete stranger came up to me and asked if I was recovering from cancer. It took me a few seconds to remember that I have virtually no hair and was wearing a hat. It was weird to be seen as a cancer patient. She was very nice and wished me luck, but I found the whole thing rather odd.
0 -
Mom2aboy / mrs brompton: when you do weekly taxol, do you still need to take 5 dose of decadron?
Decadron drives me crazy, it made me agitated and anxious.
0 -
Alice12 asked "when you do weekly taxol, do you still need to take 5 dose of decadron?"
Answer: no, I only have decadron when I'm in or my infusion. I'm taking NO medication at home, except sometimes an anti-sickness tablet.
0 -
Alice12, there's a thread called 'weekly taxol' in this forum - maybe join it?
0 -
any advise on how to counter SE of decadron? It made me agitated and anxious. I wasn't sure if it was the chemo drug, I think it is the decadron. Doc gave me Ativan, I guess to counter the SE. I know ativan is not the greatest out there, but I may need it to counter decadron.
0 -
Ms.Brompton: that is so nice. It looks like weekly taxol is easier regimen. I have to load myself up with decadron, Zofren, compazine, Ativan, serokot, everytime the chemo starts.
Let me talk to my doc and see what she says.
0 -
Alice, I've had problems with decadron, too. I suppose I'll take them over the things it's supposed to prevent, though.... Tell your onc what's going on. Mine halved my dose and talked to me about managing SEs.
In short, I understand what you're saying. I honestly think the decadron makes me feel worse than the chemo does.
0 -
Kate: did your doctor give you tips on how managing SE of decadron aside from taking it in halves? Did they give you another prescription to counter it?
I agree with you it starts making me think that decadron is the one that made me feel terrible instead of the chemo.
0 -
I'm on day 5 of my second dose dense AC and it's gone pretty well. Heartburn was so bad the first time, but this time I've been on daily Prilosec and it's helped a lot. I still have heartburn, but it's not too bad. The nausea and fatigue are worst this time, but the meds for the nausea have been effective.
Is everyone getting steroids to take at home? I only get some in my infusion. My doctor seems pretty conservative on the meds. He does have me do two hours of fluids before pre-meds, though, so maybe that keeps me from needing the extra steroids.
I had the big buzz on Friday (day 15). I might have been able to stretch it out longer, but I was thinning a lot right at my part line. Most of the hair is out now, just a light white fuzz. I really got to see just how gray I am when my husband buzzed it off. The remainder was not color treated. To add insult to injury, it seems like the few dark hairs I had fell out faster than the gray. I would be willing to trade the "chemo curls" for a nice shade of brown.
So far I seem to be a hat person. I've tried buffs and scarves, but not loving them. I haven't shopped for a wig, but doubt if I would be comfortable with one. I only have one hat, though. Sounds like an excuse to shop!
Thanks for all the updates everyone! It really helps to hear what you are all experiencing and seeing all your beautiful photos. Especially on the down days.
0 -
The doc did not delay the chemo but I need to go see the surgeon again for her to have a look at it and see if there is anything we should be doing to urge it along...
I also am not constipated or having any diarrhea but seem to have developed a tear or something that bleeds whenever I use the bathroom. It bleeds a lot in the toilet but then quits pretty quickly. I guess I am afraid it won't heal because of the meds. Last thing is need is a butthole infection. Always something... I guess I need to see if there is some over the counter stuff to help with it... Making my mind race because no trauma to the area should of caused this... I have not been constipated at all its all normal consistency sigh... Thats the way my mind works.... If it does not subside I will seek the doctors advice as its only been bleeding like that today... and that it stops bleeding immediately is a good sign. Like I tear the scab off daily and it cannot heal because of the chemo... 2 down 4 to go... hopefully they can find some ways to get these things to heal... like the sacks o' poison are not enough to deal with...
0 -
sounds like an irritated hemroid.
0 -
oh and I asked the onc about L gutamine and b vitamins and she said take the b vitamins but no on the Lglutamine???? said sometimes it makes neuropathy worse... but I know lots here take it with good results sigh...
0 -
@gooseberry I've not heard anyone say L-glutamine sometimes makes neuropathy worse. My MO says it works better than icing the hands and feet.
@alice12, I also get decadron only on my infusion days, not in between. In between I have anti-nausea meds, pain meds, and an antibiotic in case I spike a fever. That hasn't happened yet!
@kateb, I hear you about the insensitive comment your friend made, ugh. If it helps she is probably kicking herself trying to figure out how to make that comment up to you (Lordy I know I would be, it sounds like a real accidental foot-in-mouth moment).
How odd for someone to come up and ask you outright if you're recovering from cancer. Although to be honest I've been tempted myself when I've seen ladies who look like they're wearing cancer hats. I still don't think I would go through with it, though! Too awkward by far.
I have an appointment tomorrow morning to get my hair pony'd, snipped and bagged for the chemo diva wig. I realized that with the rate it's falling out, a cute haircut wouldn't make any difference at this point. I'm going to have it cut very short to leave as much as possible for the wig, but maybe have her leave some on top for a faux-hawk just for fun. Since I don't have to go to an office for work, I might as well do something with my hair that will give my kid a giggle. (He's pretty freaked out, but is planning to go along tomorrow morning - he said he'd rather be there than be surprised when he sees me after school. I've been telling him for a while that I might have to cut my hair short. He's never seen me without very long hair - this morning he even said "mom isn't mom without long hair" which made me feel a bit sad, but I think he'll get past that feeling once he sees that I'm still me with my hair short.)
I told my hubby today that I feel like I'm finally turning into a cancer patient, after fighting it this whole time. Between being way more tired in the evenings than I'm used to - I'm ready for a nap by 7 most nights, although I'm still a night owl after I wake up from the nap, lol - and getting my hair buzzed off tomorrow, I'm feeling like I'll fit the stereotype pretty neatly. But hey, so do we all, and you know what? You all rock, so that's what I plan to do too. So glad to have this group to share with.
Oh on the subject of going with the completely bald look ... at the local natural foods store today I saw a "sugaring" set for hair removal, it works at room temperature but otherwise sounds a lot like waxing. I'm a lot more comfortable with the idea of waxing my dome than shaving it with a razor. Anyone tried that?
0 -
Patience and short strokes are key to shaving. I just used my regular razor, I still have a few spots to clean up, but it really does feel better. I too have noticed how gray I am and that they are much more stubborn than my black/brown hair.
My nurses have made a big deal about eating before taking the decadron. And I will say cycle 1 I had horrible heart palpitations, and cycle 2 I didn't (even though my pulse and blood pressure were still up). I start my 3 day regimen tomorrow so we'll see how it goes this time.
I have learned that I think and talk differently than most people--your friend's comment kinda makes sense to me. There is a strength/bravery in the bald pics and they feel more genuine. The wig pics just feel...off. But being on this side of cancer I understand the need to cover up, as well. And I would totally talk to a stanger! I desperately want to go to talk to a lady at a store cafe one day--but I was still waiting on my official diagnosis and didn't know what to say or ask back then. I prefer people asking honest questions. One infusion day I got a "pity" look from another lady obviously going in for her own treatment--I felt like she was thinking "oh, look at her, so young to have cancer.". I think it would have been less awkward if she had just said something. But we are all different. I am actually very much an introvert and shy--but I hate an unaddressed elephant in the room.
Oh, ladies, I am so nervous about Thursday. Not sure why really, but I don't want another infusion. Not feeling strong right now. Dreading the inevitable. I know I can do this. I have survived worse. But I want to hide or run away.0 -
@musosgirl, I was feeling the same way a couple of days before infusion #4 last Friday. But by the time Friday rolled around I was back in the spirit. I think it's perfectly natural to want to run & hide before treatment days! But we know we can't, and we soldier on. You will make it!
0 -
Ack! I just re-read the side effects of Leukine and for the first time noticed HAIR LOSS. No wonder my hair was holding on until this week - I gave myself my first Leukine injection on Saturday. Le sigh. That will teach me to pay more attention to the side effects statements before I start a new drug.
0 -
Musosgirl, I feel the same way...I'm dreading tomorrow's infusion. It's my 4th one--and the last AC treatment before I move on to Taxotere/Herceptin/Perjeta--but rather than feeling accustomed to the process, I'm dreading it. My last infusion resulted in a long period of discomfort, so I'm less sanguine about this one than I've been in the past. I know we can do this!
0 -
Musogirl - I had that dread before my last treatment and it's already started for my next one and that's still over a week away. I'll be so glad when the AC is over. Hang in there. You can do it!
JenPam - So glad you are almost finished with the AC. Fingers crossed you feel better this time!
Mom2aboy - I hope your hair sticks around, despite the side effects.
0 -
Thanks @Tam-iam. Wishing you and Musosgirl the best with your upcoming infusions. This is what they mean when they say it's a battle!
My hair is going, I think. I'm meeting with the hair salon lady at 8:30, probably most likely to have it snipped off. Such a strange feeling, thinking of having short hair again after 14 years!
0 -
Tam-iam - I am also doing dense dose AC and I only get the steroid with the infusion, nothing to take at home. The pharmacist who taught my chemo class says that's normal with dose dense AC.
Mom2aBoy - How did your haircut go this morning? Talking about how your son is reacting really touched me. You're Mom with or without hair!
I shaved my head to get rid of the stubble this morning. I used a fresh razor and conditioner to make my head slick. I'm still not totally smooth, but it's much better. No nicks.
0 -
The hair is growing back on the top of my head! Since having velcro head is such a bummer, I may have to take the razor to it again. . . . I wonder if the rest will come out on its own, or if this is what I've got. We shall see.
I also have chemo dread syndrome. I have just over a week until my next infusion, and I caught myself moping around for a few minutes today--thankfully, I stopped. I feel great right now, and don't want to taint that with thinking about NOT feeling great.
The insurance company is reviewing my grievance re: the MyRisk profile. I gotta say, though, that I'm not entirely sure I WANT to know what's in my genes, if that makes any sense, since ignorance is bliss. Any thoughts about this?
0 -
Hi @KateB, as a BRCA1-positive gal myself, I'd say it's worth knowing. Just having BRCA1 means something like a 60% likelihood of ovarian cancer by the age of 60 - that by itself was enough for me to think it's worth it to know this now,when I'm 52 and can do something about it.
Hi @VickiRides, thank you. I'll post a photo of my new 'do, which of course I know will only last until it falls out and I join the BBBB club. My former hair is neatly trussed up in a dozen ponytails ready to send off to chemo diva, so I'll post a photo when I get it back wig-ified, too. I think my son will get used to the look after he's seen me with short hair for a bit. (Telling him to brush his teeth, take his vitamins, and do his homework should be all the evidence he needs to tell that Mom is still Mom ...)
0 -
Mom2aBoy: kids reactions to our hair loss has to be one of the most stressful parts of this, but I think the anticipation is worse than the reality. After we all were stressed about it for days, once it happened it quickly became not a big deal. My son (8) told me he actually loves me more now because it's so cute, which I will take. My daughter (10) told me the other night when I was telling her to do something, "it's kind of hard to take you seriously because you look like a baby." Well, my dear, this baby is still in charge and you'd better get ready for bed!
0 -
KateB79- I have had to take the razor to my Velcro head a few times. I'm now on day 7 post second infusion so I am hoping that the stubble quits growing back and my head stays smooth. I don't like the 5 o'clock shadow/ bristle feel. My hair started its fast and furious decent from my head on day 13 so I'm guessing this will happen soon.
I Have had an emotional week. Don't know If my hormones are totally out of whack or what. I have been an emotional mess. I could just sit and cry. I have lots of support from friends and family but am feeling very alone. The days are long at home by myself. My Husband is at work and my girls are in university and highschool Just me home alone. I don't want to go anywhere because I don't want to pick anything up due to the fact that I am in my neutropenic state. We have had a few cloudy rainy days here which doesn't help either. I felt like I could sit and cry all day. So I pulled out my Kitchen aid mixer.....did baking therapy. Made a double batch of pumpkin choc chip muffins, double batch of mocha banana choc chip muffins and some cinnamon loaves. Made care packages for 3 families that are also dealing with medical issues. One friend has Multiple Myeloma, one is just being discharged from having Brain surgery, and another who is 2 weeks post bmx. It was nice to be able to bring a smile to someone else who is struggling just like me. The relief was temporary as I'm still feeling blue, and hope it passes soon. I'm Trying to Take it one day at a time and hoping the sun will shine tomorrow.
0
