Starting chemo July 2014
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Wow Puffin, so sad. That WILL NOT be the July 14 sisters. We WILL make it!
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First, here is the L-Glutamine powder I take daily...I mix it in my yogurt...prob @2-3 tsp./day..for neuropathy....the most I've had is a weird sensation in my arm/hand...never more than a day.
https://www.amazon.com/dp/B001HITON8/ref=cm_sw_r_awd_
As for fevers...still happening. I was admitted to the hospital last night after being in the ER for 11 1/2 hrs!!!
While there, I discovered this huge mass/swelling on inner/back thigh...might have been there thurs (was in pj in bed) I reported to the ER @3pm...not one doc came by to look at it. Finally @7..,a nurse practitioner looked at with an I don't know what the fuck that is face!!!
That night a resident doc in BC surgery came by...I showed her...she was concerned. They ordered a ultrasound. Meanwhile it's 6:40 PM the next day and still no US.
Today several docs came by! The infectious disease doc thinks my port is in fact infected (recall my hospitalization 2 wks ago)....and thinks the mass in my leg is an infection possibly seeded by the port.
I am supposed to get a CT scan @7 today of the leg...need to find out what they need to do to get rid of it. The antibiotics aren't working b/c there is fluid in the mass that can be preventing the meds from reaching the infection.
The surgeon who put in the port is supposed to stop by tonight...she may take out the port tonight or tmrw.
So if the infectious disease doc's theory is right....if my port was removed 2 wks ago when I was in here....I wouldn't be here today. My insurance company is going to looooove that!!!!
Not happy to have to get my chemo through my veins....does it hurt????
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Jennliza - you look about 10 in that photo with the mask. Please tell me you aren't over 40, if so, dag chemo hasn't taken a toll on your looks at all. I feel I look a good 10 years older. Also, is that your hair??? You started the day after me, how do you have all that hair? Are you sure if they remove the port that they will not put another in, maybe on the other side? My husband and I finished watching all of NY Med and I'm thinking of you and the wait in the ER. I'm so glad I was able to fight off this cold I got last week and that I'm improving. Ask for extra yogurt or have fiance bring you them with extra culture, you don't want everything else out of wack due to all those antibiotics. But why am I telling you, you actually are taking your L-Glutamine, I haven't even ordered mine yet. I hope you don't mind prayers/good vibes, because I am sending them for a speedy recovery and that a new port can be safely put in and that the 'thing' goes away. BTW not sure if your hospital does this, and ours doesn't tell people, but the nurses/health techs can go to the cafeteria and get you extra food right before it closes, at about 9-10 at night. I'd always order my husband extra yogurts then, as we could get the flavors he wanted opposed to the 'menu options'. It just fell under his normal hospital bill, not as anything extra.
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Jennliza: Do you have a personal support person at the hospital? Your fiancé, family or good friend? You are going through so much that I hope you aren't alone.
Most important right now is for this infection to get cleared up. But, at my clinic there are two women who get their infusions intravenously at the time I get mine. They seem to be okay. Nobody is screaming or anything.
I'll keep checking in. I really wish there was something we could do to help.
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Jennliza, the infusion in the veins doesn't hurt. I did have some issues post-infusion with redness on my hand that looked like a burn...but it didn't hurt. Just felt a bit numb. But doc says this is rare. Just make sure you're really well hydrated before they start (puffs up veins) and ask them to use a heating pad if you're at all anxious as this will help them find a good vein, too. That's the easy part...your job isn't to worry about getting the infusion through an iv...it's to get well Very Soon!
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well I was discharged after half a day with 'fever of unknown origin'. No apparent infection, just...one of those things. (neupogen doing it's job, neutrophils skyrocketing...)
Jennliza - double ugh. Mass on the leg sounds horrible. Thank goodness you are getting it treated. If it helps at all I have my chemo through my veins (I didn't want a port). It doesn't hurt at all. I have crappy veins, so often takes a few shots (and I look like a smackhead after) but it's fine.
Not sure about a year of herceptin tho? (I am HER2-).
July warriors - could not do this without you. Round 3 totally wiping me out. Not sure if it's just the fever of undetermined origin or what, but I am basically a puddle..
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RainDew -- happy you're OK. Better to be safe than sorry.
Jennliza -- Wow! Hope they figure what's going on soon. Sorry to hear you're stuck in the hospital and all. Sounds really confusing (and probably boring).
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Mumford - Answering your question....I have to say that round 4 has taken its tole on my energy level but I understand that is cumulative. All I want to do is sit around and knit (at least thats what I'm calling it - looks more like knot tying). I have not been nauseated this time at all and I had the usual mild headache that I get the first few days each time. Usually after chemo I'm constipated but this time its been diarrhea. Its been almost a week after my reduced taxotere TCH infusion and my mouth and throat is starting to get that feeling like when you drink your coffee too hot. So all in all, I can't say that I notice much difference in the reduction in taxotere other than no nausea.
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oy jennliza hugs, hope they figure out what is going on. 1day at a time. They might put another port in if they can. Half glass full. If u do use veins, I had my 1st 2 in the vein and it was fine. It actually felt weirder with the port because I can feel or taste things in my throat. Drink lots of water to plump veins and put a warm cloth on veins as well to plump up.
I've had neuropathy in the little finger and ring ringer on both hands since surgery. Nothing to do with chemo but def since surgery. I think it's Ulnar nerve. Come and goes. Nobody's really had anything to say except what I look up.
So far, just losts more nausea this time around with 3. I need my extra meds cuz Emend is not cutting it. And pooped. Since I was given Neulasta for the extremely low WBC count, I asked for dose dense for the next 2 rounds and am getting it. Hopefully 2 weeks is enough to get through. The only good thing is my oily skin is awesome. My skin on my face actually feels like what normal skin should feel like.
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Jenniza, thinking of
you as I know how serious a fever can be if not treated. I am with Coyote that we wanting that
infection to get cleared up and like now.
I had one infusion via the vein
it didn’t hurt but my arm was a little bruised
after the infusion for a few days. The also used a heating pad on my veins before
the starting the infusion to puff up the veins.
Also make sure you drink plenty of water before as they pumped me with
IV fluids and made me drink a lot of water.
However that maybe because they had a hard time finding my veins L.RainDew, glad you are
OK. Thinking of you as I know how
serious a fever can be if not treated.DancingDiva and ElaineTherse,
outside of going AC every two weeks is dose dense a heavier dosage of the chemo
also. I am on every 3 weeks and get a large dose of the Adriamycin, Cytoxan due
to being 8 nodes positive although my grade is 1. Just curious as I have an
option to move to dose dense with my last two treatments and with Taxol. Is anyone else getting dose dense with Taxol?0 -
Oh dear, sweet Jennliza! Is your fiancé able to be with you? I hope you're not having to go through this alone. Please, please take care of yourself and let us know what is going on with that lump. You will be in my prayers tonight.
RainDew, so glad you got sprung. I've heard there is a really nasty respiratory infection going around with school kids. All of you with little ones should be extra cautious.
I had a pretty SE-free day, except for the fatigue (though that's fairly normal for me). DH grilled us a lamb steak for dinner and it was delicious. Last night I barely ate a handful of cousin's homemade spaghetti sauce & zucchini. Delicious but I still had no appetite. Today I could have eaten the couch. Tomorrow, who knows? Sleep well, ladies. Extra hugs for you, Jennliza.
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Yikes, Jennliza! Sending good thoughts your way!
Make sure you are on the nurses/staff about wearing masks and washing up etc etc before coming into your room. I noticed some people were rigorous and some were a little too cavalier for my taste when I was in there. And take probiotics in addition to your yogurt if you can. The thrush I had after the antibiotics killed off all of my good flora was just insult to injury.
On a positive note, infusion through the veins is a piece of cake. You won't miss your port at all, I promise.
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Hi everyone, I feel like I'm always trying to catch up here! Since I can't sleep at 4am, seems like a good time. I'm a week and a half out from round 3 and the fatigue is seriously knocking me out this time. I'll be walking around feeling ok and suddenly I'll just get so tired I want to lie down wherever I am and shut my eyes. Holding myself up makes me dizzy and nauseous. It passes after a little while, but it really sucks, especially when I'm out with my son. Really hoping it doesn't get worse after round 4, but I guess it's likely that it will. At least I should be done after that, and on Wed my boy is starting preschool, 3 mornings a week so I'll get some time to rest.
Sorry to hear about the hospital stays, RainDew and Jennliza - I can't believe you're back in again! It seems like unfair piling-on for you; you need a break. Hope it gets cleared up soon. I also get chemo (AC) through my veins, and it's been fine. I'm super squeamish about things like that, but I don't feel it at all, besides the one needle stick. My arm does tend to get cold for some reason, though, so they usually bring me a heating pad to rest it on.
Hope everyone is feeling well (or well-ish). I should try to go back to sleep.0 -
Boxo...what's with the 4am wake-up? It happens to me almost every morning. Here I am at 5:30 (out of bed since 5).
I do, however, like the blissful quiet in the morning with a cup of coffee. On Saturday my brother in law was visiting. He's in the middle of a terrible divorce and he talked and drank non-stop for 8 hours. I can't tell you how nice it was to wake up early Sunday morning to my strong coffee that just sits there, quietly.
Big week: depending on blood, I hope to be ringing the bell on Thursday after my last chemo. It's my partner's birthday next week, so the plan is to get things done this week. On the other hand, she's told me it would be a great birthday gift to hear me ring the bell on her birthday (so that's the silver lining if there's a delay).
Today I'm going for a fitness test at Wellspring. This is a cancer support organization that offers incredible classes, support groups, discussion groups, yoga, qigong, nutrition & cooking demonstrations, etc. There is a 10-week fitness thing that starts with an assessment. I'll start twice a week for a circuit thing for the 10 weeks, then once a week for another month or so...all free of charge (well...downtown Toronto...so there's parking. But I can always ride my bike. It's only about 8.5km (5 miles). For some reason I've craved sweets lately (made myself some nice pancakes for dinner the other night with Canadian maple syrup...mmmmm) and it shows on the scale.
Reading above, with so many of the girls going through associated challenges (as if the side effects aren't enough), I feel so blessed to be part of this group. You ladies are so kind, so full of encouragement even when compromised yourselves, so loving. It truly warms my heart each time I log in to this wonderful community of friends. Thank you. I hold you all in my heart.
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Mumford: make sure you post a photo of you ringing the bell!
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I've decided to show my hubby how to post in my place if necessary. If I went into the hospital, it would be difficult to let you know. We have become too close to just disappear for days without a word. Back up plans, anyone?0 -
This is Hubby. I am trying to complete my lesson. Hope everyone is doing well this morning!
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hi ladies - I am part of this group but have really been lurking until now. I have to say how impressed I am with Mags. I started on TAC just like she did - didn't do so well and was immediately changed to AC+T (taxol). I've read your comments mags and you are one brave lady as are all the ladies here.
Anyway I have one more dose of A/C then I start taxol. Just wanted to say hi to all the July ladies and hope you are doing well
Nancy
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Oh Nancy, I've come to the point where, when people tell me how brave I am, I just say, not brave, just doing what I have to do. The truly brave are the ones who are going through this with little ones tugging at them, with jobs to go to every day, demanding lifestyles, they are the brave ones. I am retired, I am blessed with two people who spoil me rotten (and wouldn't have it any other way). I don't have to do anything I don't have the energy to do. Other than the chemo, my biggest challenges are mechanical rather than systemic – in other words, my muscles and bones, joints & cartilage rather than organs and blood. It doesn't require courage to live with chronic pain and fatigue, only patience and persistence and a willingness to swallow one's pride and ask for help. Chemo just adds a layer to that.
But you girls, you who are in the 20's and 30's and even 40's with families you should be enjoying, you are the heroes, and it's so incredibly tragic to me that you who have so much to live for have to face this in the prime of your lives. I don't hate cancer for me, I've had a full life. I hate it for you, for the days it's stealing from you, for the energy it steals from you that should be spent on living. I ask for prayer for you from every person I know who prays, and I lift you up to the throne of grace constantly. I have come to love you fiercely, like a mama tiger. I only wish I had the power to make it go away.
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You are such a sweetheart Mags and completely correct about the younger ladies (so not fair to them or any of us). My kids are in college and often times I have thought how would I get through this if they were little. I too am at home so I can feel icky and just lay around - hubby picks up the slack. Anyway, I am so impressed with everybody here. Aw heck I'm a little impressed with myself as I thought I could never do this, but here I am. Love and hugs to you all
Nancy
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I am SO p*ssed, Just got a call from my cancer center, changing my appointment with my oncologist to the PA. What good was it to have a well liked and respected oncologist when all my appointments were with the PA? The only time I saw the oncologist was at the very beginning, haven't seen her since ANY of my chemo treatments. And now that the appointment is earlier in the day, I'm going to have to go to the lab at the crack of dawn to get my blood drawn so that results are back in time for the appointment.
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Well I've been MIA for several days. The other day, I was trying to get the site on my ipad and it kept telling me the system was down. I tried 2 more days and still couldn't get on here and I was freaking out! I was like, OMG, what if the site got a horrible virus and we all couldn't communicate anymore. I almost cried because we need each other! Then last night, I tried it again on my iphone and it worked so I don't know what happened to my ipad. I missed you guys! I missed so much but know that I pray for you all almost every day!
The thought of nor being able to communicate with you all got me to thinking, is anyone on facebook or instagram or have a blog or website? Here is my info in case you want to find me, FB: Rachel Hatanaka Bowers, IG:RachelBowers9560, and my blog: http://redeemed1.wordpress.com/.
So, here's what's new with me. After round 3, I have had more nausea that ever before. I was lucky because the first 2 rounds I think I took one or two pills. Now, I take like 3 a day. I was wondering if it had anything to do with the new meds for my atrocious acid reflux, which is gone btw. Woohoo! But now nausea. Go figure. I go to the gastro dr to follow up Wed so I'll ask. Also, had another MRI today and hopefully it will show my tumor shrunk since the ultrasound didn't. Thanks for all your encouragement last week when I was so bummed about it. I can feel it has shrunk therefore it has! I have also had way more fatigue and it sounds like most of you have too.
And remember the horrible folliculitis infection I had on my head several weeks ago. It came back. So now I have several pus bumps on my head again, so gross. The dr thinks it MRSA which is a nasty staph infection and gave me hardcore antibiotics. She also took a sample so I'll know for sure in a few days.
Chemo is definitely no joke and I could almost laugh at everything going on in my body because of it. I am so happy for those of you who are finishing soon, also a little envious
I keep telling myself, I'm halfway there, I can do it. Thanks to all of you again who keep me from seriously having to be placed in a straight jacket.
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Got my blood done today. ALT (liver enzyme thing) is now 218 (should be between 7 and 40). There is no way I'm having chemo on Thursday. Maybe not even the 18th. I'm over it.
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This was cool, though. Anyone recognize this guy? The Great One (Wayne Gretzky). I bumped into him today wandering the streets of Toronto.
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I'm sorry about your bloodwork Mumford. Seriously sucky. I hope they get it sorted so you can ring that bell soon.
Today must be the day for bloodwork issues. After having to bump chemo #3 for a week last week because my platelets dropped, I was looking forward to getting back to it on Wednesday this week. Found out this morning that during that week break waiting for the platelets to rise, I fell off the Neupogen-high and now my white count is in the basement. Sigh. So, I was instructed to give myself a Neupogen shot today and retest the blood tomorrow. Hopefully the Neupogen will work some of its magic by then and the count will be high enough to do chemo on Thursday. If it's not one thing, it's another, right?
Sending up prayers and good thoughts for all of you (especially those struggling with fevers, infections and hospital stays on top of all the rest of this chemo crud).
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Kebab, I'm sorry about your bad luck, too. There are so many things that can go off kilter. I hope the Neupogen does the trick.
Coyotye, great idea having a back up plan. I think we all worry about one another and a missing-in-action friend is worrisome. Gold star for hubby on the post. He did a fine job.
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Mumford, you are not over it, you will get through this, they may delay or tweak some things. Please, you have done so much already, don't quit.
Pink - when they were worried about you, I emailed you then the group to pass on your info. This weekend we just thought you were out playing in your car, going to church and maybe on a quick mission trip to WV.
Puffin - I'm pissed too. Is there anything you can do? A girl in the chair next to me what having a 'discussion' with her oncologist at my last infusion. She said, I don't want to see you during my Herceptin treatment, I never saw you during my chemo, to which the MO got pissed, and said yes, during each one in my office and I would come see you while you were in the chair also. NOPE, her last was my first, we sat next to each other and I had never seen the oncologist before. Not quite sure what games some of these people play. But, on a happy note, maybe this means you are doing so well, you don't need to be followed by the MO anymore.
Mags - thanks from those of us with little kids, but none of us deserve this. I figure I'm missing about 6 weeks of their lives sorta (I'm still here and see them daily, just not how I normally would, I missed both of the twins first lacrosse games of the season this weekend) but 6 weeks being 'out of it' is worth the next 50 years that this awful chemo will afford me. Personally, I feel for the older gals. I know at 49, this is kicking my butt, I could not imagine doing at a more mature age.
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ladyb -- I just finished dose dense AC; I think it's the same amount of chemicals, just every other week. I will be doing dose sense Taxol -- every week for 12 weeks.
Mumford -- sorry to hear about your ALT numbers! OY. But, cool that you met WG! I also love the quiet -- I worked at home today while the kids were at school and it was nice to be away from the office/kids.
Likewise, sorry to hear about your numbers, kebab. Hope Neupogen works its magic for you!
Pinkninja -- Yeah, if it's not one thing it's another. I haven't really had the nasty heartburn I had after AC#1, but I've definitely been more nauseous these days. It's hard to force myself to eat sometimes.
Puffin -- I might see my oncologist on every infusion day, but I don't really get any supercool info. from her. I'm sorry to hear that your Cancer Center keeps messing with you -- how disappointing and inconvenient!
Mags -- we younger ladies might have more responsibilities in some ways, but some of you older ladies may have had more health complications before cancer. It must be more challenging to deal with chemo when there are other conditions to take into consideration. I feel like chemo is a challenge, no matter what.
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Jennliza- so sorry to read about your high temp. Hope your home resting and doing better.Mumford- Have you tried the L glutamine powder? It has worked for many including myself but, you really have to take a lot of it in. Its chalky and not "user friendly" but straight forward. I mix it with 8-10 ox of power with 4 tsp of powder and MIO and drink it down several times per day. It may help you. I knew I needed to take it cause my toes started feeling hot then tingly then numb. It was an awful debilitating feeling.
Yesterday, My finger nails started peeling and swelling. This didn't happen after any of my other chemo sessions. I'm also experiencing a runny nose. I hope the runny nose is just because we're coming into fall and the weather is slowly changing. I have labs tomorrow and hope my WBC is good so that I can move forward with my last tx at the end of this month. I just want this to be over!!!
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Does the L-Glutamine powder taste like? I know Jennliza mixes it in yogurt, but I am one of those that HATES yogurt, yes even Greek. What if you mixed it in pudding? I see that Red mixes it with Milo, but doesn't that have aspertane(sp) nuta-sweet in it? I have an issue (migranes) from nutra-sweet.
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