Starting chemo July 2014
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Blownaway- I'm so sorry...it must be such a bummer...but just 2 more and you'll be done! You can do this! Fingers crossed that the SE's lessen with the adjusted dosage. Poor feet!
GilesMT- I've got a fair amount of stubbly hair although it's thinned out quite a bit (I also had really crazy thick hair before so I'm sure that has something to do with it) and have prob 1/2 to 2/3 of my other hair (ahem!) down there as well- ....head hair started coming out in clumps on day 17 so I shaved proactively down to level 1, but i never lost it all, not even close. Before the 4th AC, the nurse remarked how much hair I still had "because usually people are shiny bald by now!" I still have arms, legs, underarms, eyebrows and lashes...hoping the brows and lashes stay...could do without the rest! I think everyone just reacts differently. Nurse Practioner said I'd prob start growing hair soon on my head...we'll see....if anything I seem to be constantly surprised by something or other each step of this journey....so It seems better to just take it as it comes and just try to be prepared for the possibilities and stay in the moment....
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Oh and yay Joey's Mommy! Congrats on the final AC!! The 4th was the hardest for me too, but I can't really complain too much. First Taxol DD tomorrow- nervous!!
Mags- you look beautiful with wig and with cap both!
Pink Ninja- sending you good thoughts for your US...
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Shirley, I still have two rounds of chemo left, but doc wants me to finish rads before year end so I won't run into next year's deductible. I will have rads every weekday for 6-1/2 to 7 weeks. That will be a real challenge for someone who never leaves the house, basically. Don't even have a car, haven't driven since last year, but DH is talking about getting himself a different car for commuting and give me the other one. Right now my cousin takes me where I need to go, but she has other obligations and five days a week is a lot to ask.
My oncologist prayed with me today. He always asks about not only my physical health, but my mental and spiritual health as well. I told him, I struggle. He asked if there was anything he could do. I said that our mutual friend, who referred me to him, said he would pray with me. He said he'd be happy to. He held both my hands in his and prayed for quite a while. He's ann awesome human being, and I like him a lot. I'm so fortunate, and I know it. I wish everyone had a doctor like that. One of my local BC friends tried to get in to see him and he was booking a month out. My friend and her husband know him, and greased some wheels. My first appointment was late Friday afternoon before my BMX. I got the call to come in two days earlier.
Giles, my hair loss experience was similar to Veruka's. Day 18 of round 1 I ran my hand through my hair and a handful fell out. Next day I had my hairdresser shave it off. But I still have a lot up there. Mine was always thin and fine, so not sure what's going on, but I'm still finding little hairs, so it is still going. When I had my pedi the other day I was surprised to see that I had only a few hairs on my calves after 3 weeks without shaving. My leg hair has always been coarse and black (my hair before it turned gray was almost charcoal brown) so it's noticeable when I don't shave. So that's a good thing. Still have underarm hair, and the private parts... Well, when you get old it gets pretty sparse anyway, so I can't say I've noticed a difference.
A little bit of nausea, so I took my zofran and going to try to sleep. Nini July princesses!
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blow away I am so sorry that you where told two more treatments, but on the bright side it is only two more and we are all here for you.
You could do what I did after my last treatment, my ex said lets go do something, and I said you paying, he said yes, I said I need my "happy place", my granddaughter jumped for joy and my ex took us to Disneyland for 6 days so I could find my happy place on splash mountain. Onco doc took a fit but she is not the one stuck with a needle every three weeks.
Chemo tomorrow, ex asked what I wanted to do after and where I wanted to go, I don't know if I should push it and say wdw, or just stick to the beaches here in Washington, either way I will find my happy place. My last treatment I want the mountains, leavenworth, octoberfest should be starting and I want to go there.
I guess you should know, ex and I married, seperated after 5 years, divorced after 12 never getting back together. A few years later for the kids sake we buried the hatched and have been going on vacations ever seens, we have been becoming better friends over the last few years, now it will be 28 years since married on 9/6, 23 years seperated on 9/6, and 16 years divorced on 9/6, and he has asked me to remarry him on 6 occassions over the last few years, so I am scared to go away on 9/6 because I love being independent.
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Blownaway: I thought I responded to your bad news of two more chemo sessions, but did not see it on here. It is indeed a difficult delay to deal with. I do hope they are kinder than the previous ones. It is rather like getting "topped off."
Your situation made thing about something that happened during my last visit with the MO. Part of our discussion was about the strength of the chemicals in my soup. She said that usually on the third session she turns down the mix. But because I was doing so well, she asked if I thought I could handle the stronger dose again. I think I did okay with it...but we will see about the blood counts after the tests. I did not realize that they did a change up from one session to the next.
Yes Joey'sMom, and Veruka: That's great that you have that behind you. In our clinic, they ring a bell at the final infusion. Did those qualify as final?
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Gilesmt: My cousin remarried her ex this summer after 25 years apart. Sometimes the bonds are just there.Washington is the home of my heart. Born and raised there; birthed and raised my children there. Two sons live in the Seattle/Bellevue area. I wish I could bottle the smell of it and make a room spray. I would spray it on my pillow every night and sleep like a baby.
About hair: The first time I did this, there was no hair anywhere. This time, there is a bit of stubble on top, and some eyebrow hairs remain. The loss has been slower except that most of the head hair came out just before session #2 and then started to grow back, but quit.
I wish you well with tomorrow's session.
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Hi All,
So I finally feel s/e's that I can't ignore...extreme muscle fatigue. It is hard to walk...my legs ache like I leg pressed 500lbs!! I am also more fatigued than normal...but pushing through. I pray this subsides...because I live in a 5 story walk up and going down stairs is quite difficult (more than up).....not to mention all the subway stairs I have to take to get to and from work.
I think other TCH ppl have complained of muscle soreness/fatigue...wondering if it's getting worse for you too....this was treatment #3.
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Jennliza, my fatigue has been markedly worse this round, too. I've barely left the house the last couple of days. I had to stand in line for a prescription this evening and I had to support myself against the wall! Add that on top of the bone pain from the neupogen and I've been a cranky camper. Seems to be easing up a little this evening, though, so hoping I'm on the upswing at this point (my 3rd treatment was last Wednesday).
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hi everyone,
Just checking in :-)
Welcome gilesmt. I found your story super touching. Amazing how well we all come to know and depend on each other here. I hope you find us a home.
Blownaway - ugh. Did your MO spring it on you? Agree w everyone else tho - only 2 to go!!
Pink - good luck!! We are all thinking of you. Fingers crossed :-)
And awesome for everyone finishing DD AC and moving on to taxol. Yay! Speaking of, anyone heard from ChaosRains? It's been awhile...
Finally, for TC (or TCH) sisters on tx 3 this week - me too (assuming bloods all good). #3 on Friday...weirdly I can't wait...can start to see the finish line now and want it so bad...
Rain
(more or less no body hair. Anywhere. No eyelashes either - and turns out those suckers were USEFUL not just pretty. I miss them. Still have about 50% eyebrows and...drumroll...80% of my mop top...yay cold caps!)
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kebab and Blownaway -- sorry to hear about your setbacks. Hope things start looking better soon!
JoeysMommy -- congrats on finishing AC! I hope to join you TODAY.
For all suffering from fatigue -- hope your energy levels pick up. I know what it's like to struggle to do the smallest task.
Giles -- I still have some head hair (though it's been shaved down), some pubic hair, my eyebrows, and some sparse eyelashes. After AC #4, who knows what will be left.
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Jenkay, are you taking Claritin for the Neupogen? I actually forgot this round since sun...and have been ok. I just take it proactively...don't know if I get bone pain from it.
I didn't take L-Carnitine on sat/sun/mon...I wonder if that is why my muscle fatigue is way worse. I'm back on it...
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Pinkninja - Good luck today....sounds like you are responding well....so who knows could be gone by the time of surgery!!!
Its seems that we Taxotere, Carboplatin sisters got hit hard with treatment #3.... JenKay is also incredibly fatigued. I feel it in my muscles...
Juicing sounds like a good idea. I mostly eat fruit and veges and take green food powder...but will break out my Ninja for some juicing.
We all hope you post amazing news later!
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I'm at my oncologist waiting for blood results. I am super fatigued and had the 3rd TCHP last week. My muscles feel like I've run a marathon and I can barely make it thru a store.
I'm drinking fluids and I've been anemic the last few blood draws but I feel really anemic now. I'm gonna ask for something as soon as I see the dr
Yesterday I had my us and it showed my tumor barely shrunk which is bizarre because you can feel that it has. My specialist was bummed so I have to have another MRI then they may change my chemo cocktail. The acid is burning my throat and I'm feeling very frustrated now.
I'm grateful that I have a strong faith or else I might just throw in the towel.
Going to primary dr later and hopefully she can give me meds that will help.
For the ladies taking l glutamine, how much should I take? Anyone else taking supplements for their gut? I also take a probiotic.
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Constipation Help ... OK, just starting to come back from cycle 3 hell (last Wed)... still some visual issues, so probably won't be able to read everything to catch up, but...
Took Miralax, at bedtime Wed (day of chemo) - nothing Thurs
Took 1/2 Magnesium Citrate bottle w/ same amount of Gaterade punch flavor Thurs bedtime - yuck, but... slam it, you are supposed to do fast, and I did, since I wasn't nauseous from chemo yet, I could... not sure if I could have on Friday night
Woke up Friday morning, normal time and had liquid bm on and off for about 1/2 hour BUT no cramping, no pain!!!!!!!!!!!!!!
The next few days, only had 2 bouts of the big D where I took RX lomotil, but either it fixed it, or because I wasn't having the BIG C issues, it wasn't that bad. I'm certainly adding this to my bag of tricks for the next cycle. BTW, I take a stool softener 2 days before chemo day and for the next 3 days. Not sure if I need to with this plan, but I'm sure it doesn't hurt...
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Pink - my MRI is later this week, I think, but my MO told me it might not look like it has shrunk at all, even if it has. Seems the 'killed' cells can look the same on an MRI as active breast cancer cells. He said the 'feel' was important. Didn't you say you felt like it was smaller??? I also think I've seen other posts on this. Ask your MO, or call your BS and ask her/him. I think that is when we really know, when they go in there to get the area with the marker out.
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Pink -- I don't really trust ultrasounds as much as MRIs for tumor sizing. According to ultrasound, my tumor was 3.9 cm, but the MRI showed 5 cm. Indeed, just using a ruler showed it to be larger than 3.9 cm! I've also heard the same as kmntwins, so don't lose hope.
I'm sitting at MO, waiting for my pre-infusion exam. Hope my numbers are OK and we can get #4 done!
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Today's posts were huge - information wise. knmtwins: Did you pm that to Pink by chance? She really needs to not miss that.IMPORTANT: I wrote about post #3 exhaustion in an earlier post but it is important. My muscles even "quivered" inside. I had to wear a neck brace to hold up my head and sit on the stairs every few steps on the way to the bedroom. Hubby was saying, "Call the doctor." I said I would tomorrow if I'm still this way. What I did was consume large quantities of PowerAde Zero - a electrolyte infused sports drink that my MO had told me to drink - diluted with sparkling water. I drank it non-stop during my awake hours. I made popcorn and used Wright Salt (a salt substitute made with essential minerals) on it. The quivering exhaustion subsided and my weird tiredness became normal tiredness. Low electrolytes can be very dangerous - even fatal. I did not figure out the answer to the problem by myself. A health foodie friend of mine said that it sounded like my electric system was out of whack. Another friend told us how his wife had collapsed and passed out and was taken by ambulance to the hospital to discover the cause was that her electrolytes were low. It's hot. We sweat. Lot's of us are dealing with the big D. Our electrolytes are being flushed down the toilet.
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Feeling like I've turned the corner after #3, was able to drive to the grocery store this morning, also stopped and said Hi to my hairdresser. She recommended Nioxin Cleanser for my scalp. She really liked my wig.
Legs shaky again now that I'm home, time to kick back in the recliner for awhile.
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Still haven't had time to go back, catching up on hundreds of emails first. I just emailed Pink, what I posted here. What is in Gaterade 0 that is different from the others? I'm all shaky and rubbery today. Drinking a gateraide and bottle of water so I'll be hydrated for the needle stick in 20 min for blood work.
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Wow. Lots going on here...we're a pretty shaky bunch after round 3. It's been 2 weeks since round 3 and I'm feeling good except for some weird digestive thing that feels like a heart attack (it's not...I had it checked out). I'm dreading round 4 side effects, but can't wait to finish. I may ask the doc about lowering the Tax dose some...it feels like the right compromise.
I'm so sorry for all the things many of you are going through: the delays, additions, disappointments, worries. All these things on top of how lousy we're feeling. As if we weren't already compromised...
I sure wish I had some helpful words, but all of you commenting before me have said so many great things already. We are blessed to have each other. Hang in there, all...
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Pinkninja - Are you taking Omeprazole (same as Prilosec)? I take 40mg a day....and have no acid burn. I also take an excellent Probiotic twice a day....and I eat a Greek Yogurt in the morning. I put a heaping tablespoon of L-Glutamine powder in my yogurt. The tablets come in 500mg strength...which is too little to be effective. There was a study using L-Glutamine for Neuropathy....they used 30G/day.
The powder I have, I bought on Amazon (was less than $10 for the container which has lasted me @ 1 1/2 months).....it is 4500mg/tsp. So that is 4.5G....a heaping tablespoon probably brings me to just over 10G.... I didnt bring the powder with me this weekend so didnt take it Sat-Mon....and wonder if my muscle fatigue is due to not taking it. Weight-lifters also use L-Glutmaine to help them rebound from tough workouts.
For those of us who got chemo last Wed...today through the next few days are our weakest....we are neutropenic....so be careful!!! Funny, I'm telling others....while I sit here in a big office with ice cold airconditioning...and will take a germ infested subway home. HA!
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Mumford - I was almost sure I was having mild heart attachs but without the sweating and nausea. I spent quite a bit of money and time persuing it with my cardiologist who was never able to explain my symptoms. Finally, my family doctor that I really trust, told me it was esophageal spasms. Google it and see if it matches your symptoms.
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Had Round #4 today -- felt a little queasy afterwards so I skipped lunch with my infusion buddy, Aimee. But, once I took my anti-nausea meds, I felt well enough to eat a little. Dinner, I ate even more.
I guess I'm happy to be done with AC, but because I have Taxol, Herceptin, surgery, and then more Herceptin and radiation....it feels like I have a very long road ahead. I envy you ladies who will be DONE after chemo! Oh well; I know I had a big tumor and it is Grade 3 ("It was growing like kudzu in the lab!" exclaimed MO). Have to be aggressive and try to get as much as I can of it out of my system.
On a happier note, my Turkish graduate student made us dinner, and she made us some awesome tabuli.
Hope everyone had a good day, with some easing of SEs!
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I could use some advice...
I feel like crap and have 100.8 fever...no other symptoms except achey body, chills and burning up.
Instructions say call doc when have 100.4...but it's evening here.
Would you take a fever reducer like Aleve...I know not to take Tylenol? Or am I masking symptoms I need to know I have?
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Jennliza: Call the doctor. There is someone waiting for your call.
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Hi All,I just had chemo session #3 yesterday 9/2/2014 and am super tired. I still get up to walk and make sure to take my L-glutamine powder twice a day to stave off the neuropathy (it works great!!). I had horrible nausea last session and was advised to take Prilosec with my nausea meds since that could be what's contributing to the nausea. Also, I had four days of diarrhea last go around and the Pink stuff didn't work. I just suffered through it but was told to take Imodium two tablets right away then one tablet with every bowel movement. I haven't had too many sores in my mouth. My hair fell out after session #1 and it took me four days to get use to being bald now I just go with it. My hair starting to grow back so I'm just monitoring to see if it will stay or fall out again.
This is a picture I took two weeks ago. Just going with the flow of life.
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Jennliza - so sorry I normally spell that wrong. Call the doctor, but they might tell you to go to the ER, for a bag of antibiotics... so you decide, they are germy places. Not sure of our oncology centers have IV antibiotics or if we have to go to the hospital, so not sure what the answer will be tomorrow. Also, why can't you take Tylenol? My MO prescribed a pain killer with tylenol in case the bone pain was bad. As to feeling bad, I think I have a cold the kids brought home from school, but haven't taken my temp as I'm still trying to push fluids, so it wouldn't be accurate. Also, do you do the Neulasta shot? Isn't it working? My WBC have been fine with my labs, which are done weekly. Do you do them weekly? If so, what was it today? Here are mine. June 10 was before anything started and July 16 was chemo 1. To me the chart is backwards, but that is how my center does them. I'm updating with the numbers as this chart isn't displaying the way it displays in preview
6/10 8.21; 7/16 7.8; 7/23 8; 7/30 9; 8/6 8.5; 8/13 8.2; 8/20 8.1; 8/27 7.2; 9/3 8.2
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Jennliza -- MO's instructions for me: Do not use Aspirin or Ibuprofen (Advil, Motrin). If you need pain medication for mild pain, use Acetaminophen (Tylenol). I guess you could take Tylenol. But, I agree with Coyote -- most oncologists have someone on call during the evenings. I'd see what your office recommends if I were you. Hope you feel better soon!
redheeledwomen -- thanks for the update! Good to hear from you! Great pic.
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thanks for all the info! I got a bag of iv fluids since I was dehydrated from not being able to drink because of the horrific acid reflux. The doctor gave me another RX for protonix but now I take it twice a day instead of one and she also gave me prescription strength Zantac. I still have to go see a gastro though but hopefully these will help til I get there.
I'm definitely gonna order the l glutamine, can someone send me a link on Amazon?
I have my MRI on Monday so I'm hoping that will show the beast has shrunk. The dr said it could have just changed shape or something. It def feels smaller.
I'm really grateful for each of you and I pray for all of you a lot. It helps to know that we can share here without judgment and that each one of us knows how feel.
Thank you all for the support
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Hey guys! Hope you are all doing as well as possible!
I made a post this morning but it disappeared somewhere into cyberspace and today was infusion day 1st dense dose taxol. Still too early for me to tell how this is going to affect me because I usually don't start really feeling it until day 3 or 4... hopefully it will be better than the dense dose AC was to me...
I'd ended up hospitalized for 3 days with bad blood counts I was scheduled for a blood transfusion on day 3 but when they did my bloodwork the morning of day my white blood count had shot up to 12 several other lows had come back up to low normals as well, so barely skidded by having to have a transfusion, thank god!
Got out of hospital in time to celebrate my first born's 20th birthday, though honestly I don't remember most of it at least I was there for him.
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