Who is starting chemo in September 2016?
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Welcome Makeiki3! I've read acupuncture is great and I would be open to that myself if I could find a place that does it in my rural area. I so miss living in a big city sometimes, but the country also has it's charms. Medical marijuana isn't legal here, but even if it were I could not partake as it would get me fired from job. I honestly don't know that I would anyway, but if it helps others I'm for it.
I'm with you, I knew I had cancer before the diagnosis, but still nothing prepares you for hearing it confirmed. That's a cool idea for the head shaving party. My husband shaved my sister-in-law's head three years ago. I don't know that I will ask him to do that for me. He has been nothing but supportive, but I know how he loves my long hair. He was there when I cut it off and he keeps telling me how beautiful I am, but I know he cried on the inside. A bra burning party? It's almost 100 here, while the thought is enticing, nah...lol I gave mine all to my sister, some still had tags on them. I saved one and on my adventurous days I wear my falsies. I still haven't made the leap to reconstruction.
I love your spirit, Makeiki3! Keep fighting!
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Speaking of medical marijuana, it just became legal today in Ohio, one day after my first infusion. Not that it will do me any good because I'm sure it will take years of bureaucracy before it is actually available to the average patient.
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My MO said that RSO or med marijuana is ok, she just doesn't want to deal with paperwork. So, I can get it here legally, but she thinks the only benefit is for appetite
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This lack of appetite is the weirdest side effect for me. I'm a big girl. I love food. The only reason I run is so that I can eat more. I have never had a lack of appetite in my life and now I'm forcing myself to eat just to avoid nausea. Worst weight loss plan ever.
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Well 1st round went good, was crazy as I could feel everything running through my veins slowly spreading through my body. But I have always been extra sensitive to things in my system. I went shopping for supplies after and that went well. Sleep good till around 2300hrs then woke up nauseous and a little dry heaves (nothing close to what my 20s were like LOL) so not too bad. Took the anti nauseous meds then back to bed.
Today is going good, drake 36oz of water first 2 hours after waking. Well on my way for recommended amount. Thanks ladys for the heads up on that. Doing light house work, cleaning and laundry. But not getting the steroids go getter that others are having. May be due to my extremely low Iron. Eating is going slow but my tummy has been off since double mastectomy.
So cold caps, I saw a lady yesterday doing it and wow what a lot of work. Personally I could not do it. But if you have the time/support/and courage go for it. This lady had a team of 3 people helping her she had to change her cold cap every 15 min I think. They had a ice chest with dry ice and unknown amount of cold caps in it. They guy would have to put on gloves to take out and get it ready then the 2 ladys would put it on. The lady getting chemo looked to be in soooooo much pain the first 5 min it was on her head. So that's just an FYI.
Thanks everyone for all your help and support its so nice to read where and what everyone else is doing!!!!
Rock on everyone!!
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I'm finally around the bend with the bone pain--knock on wood. It started to get better yesterday, which is day 7 for me (I count day 1 as day of infusion). To be honest, the bone pain was horrible. It started the night of day 3 and I took Claritin, Aleve or Ibuprofen, and oxycodone, and it hardly touched the pain. I had already been taking Claritin and Aleve prophylactically starting the day before the Nuelasta injection. Not sure if it would have been worse without the meds. Don't freak out though, it's different for everyone and I had a really strong reaction to the dexamethasone which pushed my WBC up really high, it was at 28 on the day of my infusion. And when I went to the ER on Monday, which was day 5 my WBC was at 3. The PA said that that big of drop would cause a lot of pain. I was also having Neutropenia fevers which made everything worse. They're giving me daily IV fluids to clear the drugs out of my system and I'm feeling a lot better. She also said the Nuelasta wasn't working for me, I sure wish that if it didn't work it also wouldn't cause bone pain. I'm so happy the bone pain has gotten better, because I could not have done that for much longer. It's been the only really bad SE. Stomach cramps and mouth sores, are painful but doable. Haven't had hardly any nausea.
Keep strong, thinking about everyone, especially those starting their infusions this week.
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Forgot to ask everyone....... what's you plan for eyebrows???
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Ok ladies, in the spirit of full disclosure for those ladies following behind me with the same cocktail. Some of the symptoms I've been having aren't related to chemo, but instead to a surprise period that was almost two weeks late. I assumed due to stress and anxiety my body decided to skip one this month. I apologize for TMI, but some of the symptoms I've had may not at all be related to chemo. I've had leg pains, headache, very mild nausea, and yesterday extreme fatigue. Today I have felt much better, other than a major headache only to go and find my surprise when I went to shower. My nuelasta has ben injected and I am not looking forward to the pain I am sure is coming. Motrin and claritin are in my system and I hope keep the pain to a minimum. I get bone pain with my monthly cycle anyway so perhaps it won't be too terrible. The only SE I know is chemo related is the sore scratchy throat and heartburn.
Stay strong, be positive, and fight!
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LisbethS-so glad you're feeling better, but sorry to hear you are having a rough time. I hope it gets better for you.
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boondockD I don't have any eyebrow plan...probably should get one. I don't use any pencil or anything on them regularly. If I try to pencil them I look like a clown. This isn't good.
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Haha I don't do anything to my eyebrows but I have a teenage daughter who is a whiz with make up and I guess I will have her do them. I am signed up for the Look Better Feel Better class at my center next month. They seem to help with that too.
I had my first treatment today and I am so tired. It was a super long day that started when I woke up 1.5 hours before my alarm that was set for 0400 and ended when I got home at 1900. I had to be there super early for PET/CT as I said. I already have the results from that and there are three lymph nodes and there are two tiny nodules on my right lung. The report said chest CT in three months. I see my MO on Monday so I hope to have answers as to ER & PR as well as her thoughts on my lung. I had a PE in March so maybe it is something from that? One can hope.
I took Claritin but they failed to mention that the pharmacy closed at 1700 and so we missed getting Zofran. The center is an hour away and I do not have prescription coverage so praying I don't feel sick. Not much else I can do about it. I cannot even imagine driving there again tomorrow. I have been there twice this week already. I cannot take Motrin for the Nulasta as I take blood thinners so I hope that Tylenol will help with the Claritin. My tummy feels a bit off but it had so much medicine today that I am not surprised.
I hope you are all doing well and I do apologize for not responding to each of you.
Thank you for all the info and support.
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I'm on day 15 and counting down now to treatment #2 on the 14th. Feeling stronger this week, have been able to work pretty much a full schedule Tuesday through today. Monday was a day off for Labor Day which I wasn't complaining about. After my hair started to go yesterday, it's been steadily dropping off. More visible today than at first. May have to go to a scarf tomorrow until the afternoon when it's getting cut off. At least the weird moulting effect with peeling around my nose has stopped. But I still have zit-like spots on my face, so yeah. Ugh. Another quirky thing is that my eyes seem to be dry or trouble focusing occasionally.
The hair falling out isn't bothering me that much, it's more a curiosity to observe how it's happening. But... it is stressing me out a lot that I will be going from a largely invisible condition that only I and a few confidants know about, to a new stage next week in which what's going on will be much more evident to anyone I'm in contact with. Sometimes extremely evident if I don't use the wig extensively outside home. Didn't help today that I had to explain the situation to a second supervisor and kind of lost it, lol. Mostly I'm going ok ok but sometimes the emotions just make a breakout.
Also starting to fret about the lab tests and whether I might get some kind of bad readout that would set back treatment or put major limits on my ability to work or get around.
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Welcome New Faces to the Chemo Train!!
MBella....Glad you are having minimal S/E's lady!
Misslil...I am with you on this water kick...it is so hard for me to drink 5 bottles of water a day...omg..the struggle is real..lol
Ware..hope your WBC goes up lady and knock the ceiling out..lol
Sam/Emily...Glad you had a smooth chemo day..1 down and 5 to go!!
Looks like a lot of ladies started chemo this week..sounds like everything went smooth and well...congrats ladies!
Makeiki3...wish i could smoke an el right now.. but not for my appetitie...but to escape cancer for a moment ..that would be so great!!
Boondock....Rock on lady!!
Not having a great night ladies..today is day 14 from my first treatment.. and while i was at work i happened to run my hand thru my hair and small chunks was coming out...i almost lost it while i was at work...but i sucked it up and left my hair alone..when i got home..i asked my hubby for his clippers...he say you not finna cut your hair..and continued to watch football..i then grabbed the scissors off our dresser and started to cut my hair off..he saw me and hurried up and found his clippers and cut my hair...i felt like screaming...thought i would be ready to let go of my hair...but our hair is our "Glory" ...i will have my second treatment tmrw...i don't think i will ever get used to having these infusions...i am so sick of this ish already and after tmrw i will have 14 more to go...hope everyone has a great weekend.
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Wow. missed alot...back to school night for my 6th grader
Welcome AngelaK and Makeiki3....Makeiki3 You sound like my sister from Oregon. She would tell me about the moon also. I may try acupuncture..thanks for that tip. Know someone who just got licenced recently..may give it a go. Keep up the positive 'hunting' vibe...love it!
Seq24 nice how you got your wig styled and glad you have the time to take from work. Hopefully your running to bathrroom will be short-lived!!!
Bagsharon - what's the deal with Clariton? I asked my office's allergist..she had no idea... you really use it for bone pain?
CC2016 I hear ya ... not ready for buzz and was going to get it cut short...the beauty school is a good idea... why pay that much for a cut!!
Lisbeth...awesome that the Magic Mouthwash worked...I am so nervous about the mouth sores..now I just have to get my MO to prescribe it for me just in case if I can!! Does yours have Zovirax in it?
Smilethru- I feel you - I think I am in denial still about hair.. I am preparing but still doesn't seem like it will happen. I am so late ordering my wig.. Kids started school this week and I thought I had more time but now I'm a week out. UGH
Leydi - thanks for the pill info. I just feel like if estrogen is feeding another bugger, then I should remove the estrogen as soon as possible. Mine is 100 percent estrogen too. 70 percent progesterone.
Continued Good Vibes to all!!!
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Round 2 was today. So far I am tired, but nothing terrible. I tried sucking on ice cubes this time to help with mouth sores (not fun by the way). Really no nausea yet, we'll see tomorrow. My hair is still hanging in there, I almost just wish it would fall out so I could stop worrying about when it will happen. I've been trying to clean up my diet, cleaning products and personal care projects. It helps to feel in control about something and to have something to focus on. I hope everybody else is doing as well with their rounds! Just a comment to provide hope to others, on round 1 no bone pain at all with neulasta. I hear it is terrible, but it may not happen!!!
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AngelaKS sorry you have such a distance to go. That just makes things that much worse. Hope you get your meds. Doc should have prescribed them to you earlier. Shame on them for not giving you time to prep.
Bones have started hurting. Weird feeling. Scalp is itchy this morning
maybe reving up for hair loss.Have a good day ladies. One day at a time.
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Oh goodness! I hope you are able to control the bone pain Ware. Mine will medicate this evening so it is coming I am sure. xo
I felt fine when I got up but I ran out to the store and had the heat on to clear the windows and when I was driving home got quite warm for about 40 seconds and have been a bit queasy since. I have a 7UP and a Vernor's and took a tums. Hope that will work until I can call my primary to see if she can give me a sample of Zofran or something.
It does make things more difficult. The local hospital is now a campus of the hospital I go to (not the cancer center) but they are remodeling and my bad luck is that includes the treatment areas. Good news is that I can go there for appointments with my MO. I flat out refused to drive an hour for a CBC so I am doing those here too. I promised to go early in the morning so they could get the results sooner.
It has been a long time since I was a part of a message board group like this. I had one when I was pregnant with my son and I am still in touch via Facebook with many of them.
I am off for my haircut at 0900 so please wish me luck. I hate it when they cut an inch or two too much so it will be hard to watch them cut it all off. It is for a good cause though, someone will get hair I hope from it.
Have a great day!!
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Day 3 since Emily's 1st round with no real side effects yet. The Neulasta patch worked as advertised and injected the medication right on schedule last night. Still taking Claritin 24 to head off the expected bone pain. Hopefully that works. She'll take her last round of Decadron this afternoon. She's drinking tons of water, eating oatmeal, prunes, probiotic yogurt, and taking Colace to stay regular and flush out the chemo. It appears to be working. We are anticipating the worst to start this weekend based on what I've read in last year's Sept 15 thread (and elsewhere). If you have the time, I'd recommend following along with that thread from a year ago. It appears to mirror how things are progressing with this group. And it is encouraging to see how those ladies supported each other through the process and then emerged triumphant at the end as I know you all will too.
Healing thoughts to all!
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Boondock, I'm actually more upset about losing my brows than my hair! I'm enrolled in the Look Good Feel Better program which is conveniently scheduled two days before my second infusion. If they fall out before then, I'm going to book an appointment at an Ulta's Brow Bar to see if they can show me how to draw brows.
ACS74, Funny thing but my period also started out strong a few days before my infusion as well. I had an endometrial ablation years ago and it is usually just one day of barely there spotting so this heavier flow was odd. My MO said chemo would most likely make me post-menopausal anyway since I'm over 50. Good riddance.
lmenken, I don't know what the deal is with Claritin but so far it seems to be working. I've read it could be any antihistamine but tests have only been done on Claritin. This is high season for allergies for me and I usually take Allegra but I switched to Claritin just in case. I might stick with Allegra for my next infusion just to see what happens.
I keep waiting for the other shoe to drop but I still feel pretty good. What is the saying? Anticipate the worse but expect the best? My tongue is feeling a little sore but I think that is due to all the fermented foods I've been eating to build up the flora and fauna in my gut (kefir, kombacha, cheese, yogurt, saurkraut, pickles, etc.)
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Well, here I go. Leaving for my first AC treatment in about an hour. I'm actually fairly calm but fear of side effects has had me awake since 4:00 a.m.
Sam--So glad Emily is having good results so far. I was told that days 2-4 after infusion are the worst so maybe you are almost out of the woods. Please keep us posted.
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Good Morning from Maine! I was just wondering if anyone else is taking Lupron, monthly injections, to stop the ovaries from producing more hormones. Seems like I'm the only one and just wondering why...
My regular hair dresser really wants to cut my hair for free so Monday it is. I still think I'll let the kids and hubby shave it all off though. Just doing it in stages. Have to admit the lack of eyebrows is what wigs me out, but don't know what, if anything, I'll do about it. I'm not a make-up gal...but I may become one yet!
Tired of waiting for chemo to start. Also, doesn't seem like anyone else is doing TCH. I turned down ACTH because of potential harm/side effects. Just wondering yet again...
Getting ready though with all my supplies. Cannot thank those of you who have already started chemo and are sharing your experiences as well as your wisdom. Feel like I'm going to my chemo teach class next week with lots of questions.Is anyone else thinking of tattooing their new breasts when/if you get them? I'm not just talking 3D nipples...
Wishing everyone a Happy Friday. May it be pain free, stress free. May we count our blessings.
PEACE!
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Eyebrow plan...hmmm I quit tweezing a few months ago in hopes that at least a portion of them would remain. haha I don't really have a plan. I do know how to fill them in, so hoping they at least partially hang on. I'm more worried about losing my lashes. It's the small things we take for granted everyday until faced with something like this. I just keep reminding myself that it's only temporary and it to shall pass.
Day 3-No nausea today, I have not taken any Zofran at all (wish I could share with you AngelaKS). I don't like taking pills unless I need them. I have kept motrin in my system for the bone pain and cramps. I'm eating small meals, no appetite change really. Everything tastes the same except water tastes salty. That makes it hard to drink, but I'm chugging away. Fatigue is kicking my butt. I am managing to get my physical therapy from surgery in somehow. I would like to attempt a walk today, but I will see if my body lets me.
Be strong ladies!
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ACS74 thank you! I went to local pharmacy and it is $95 so the cancer center is mailing it and it was $22. I hope it will be here tomorrow, but more likely Monday.
Well, I did it! I cut off all my hair, there is plenty to donate. I know there are many worthy causes, but I chose to donate to one in Michigan that gives to children with hair loss. It is difficult for me at 43, I cannot imagine a child. Well, I can, I remember a kid from primary school who must have had Alopecia and had very little hair. Children tend to be mean so that is my choice.
I feel pretty good, just tired. Neulasta will do it's thing about 2000 and then I can take a shower!
I am glad Emily is doing well, we are close in infusion days and we are on the same treatment, so I really appreciate your sharing. I had lunch, still have a bit of a sorta heartburn or something feeling but it could be so much worse so I am okay with that.
Thank you everyone. I am so glad I found y'all.
ETA: I have been reading the signatures and I notice that most of you had surgery first. Mine is not until after chemo, just interesting.
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Angela - Emily was given the choice of having the surgery after the chemo, but she was adamant she wanted the tumor removed as soon as possible, so that's the route we took. I've seen many posts on this site where the chemo went first and the ladies were able to see the tumor shrink and/or disappear during a follow-up mamo.
Have a great weekend!
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Yes, Sam, I think that is what they are hoping for! It is quite large. More than 10 cm so hopefully it will shrink some at least.
You have a great weekend too! We have our son's first football game tomorrow so it should be fun!
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Seq24 YOU GOT THIS....thinking of you and sending more good vibes for a smooth round!!
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ACS74.....Glad you are dealing pretty well although you are brave tonstop the zofran..I am a chicken for nauseous feeling . Rest when you need..and then you can hopefully you will get a little energy for your walk...continued positive thoughts for low SE's!!!
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Nayda985..Aw..wish I could give you a hug...your last post made me tear up....I don't know but I think you made it finally real..I was thinking 2 weeks would be when mine would go..and have to chop it t by then. But your beautiful soul will shine through ...we are all fierce! Thinking of you . Stay positive and strong....much love to you!!
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I take Loratadine (Clariton) now for allergies all the time - will it still help for SEs? I am worried about that.
I barely have eyebrows now - so am thinking no one will notice when I don't have any. Plus - I wear glasses, so hoping that covers up the oddity of my missing brows.
Smile-what chemo are you doing? AC/T? Or something else? I have Compazine and Dexamethasone too - along with andanceatron, but not sure what all they are for yet (chemo ed on Tuesday for me). Acupuncture would be awesome! Do they offer that? I would love that during the infusion...who do you ask?lmnecken - you are extremely lucky about your work and leave! I am so envious. This whole cancer trip has made me realize I need a better job that does offer medical leave! My job, while it is great to work from home, is headquartered in Spain so they do not have follow/have any of the US rules and regulations. In fact, I am paid via 1099, so really screwed! lol.
AngelaKS - did I already ask? Where are you going for your treatments? I am at Henry Ford (and live in the Commerce Township area).
Bagsharon - what is up with the fermented foods? And what is Kombacha? I have gut issues already so terrified what chemo will do to my intestinal and stomach linings.
makeiki3 - I don't know what Lupron is, but if it suppresses hormones than I want it! lol. I also don't know what TCH is - is that a type of chemo? If not, what chemo are you doing?
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kdtheatre, when I was younger I was very prone to yeast infections. This was back in the dark ages when you had to get a prescription. My doctor must have gotten tired of calling in prescriptions so he suggested eating yogurt daily. It works most of the time but when I have to go through something like taking an antibiotic, I double down on any food that might contain probiotics. I figure it can help with chemo too. So far, I'm not experiencing any nausea, I haven't had to take a Zofran and my nether regions are still happy. Kombucha is a fermented tea. You can usually find it in organic juice area of a larger supermarket or in a health food market. It's a sweeter, less tart alternative to all the sour fermented foods.
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