October 2019 Chemo Club Members
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Good morning all,
I am posting my coworkers with the support they have given me through out my breast cancer journey. They are a wonderful group of people and I miss working with them. I'm truly blessed
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Greetings to all..
Martaj, that is great what your co workers did. Mine did the same thing they had pink Team University t-shirts for Oct. The put tape over the University part and put my name there. They also wear pink socks on my infusion days. It's nice to have coworkers who really care about you.
Have 6 more days till next infusion, praying it goes like the last 2. So far so good no real SE but WBC to a big hit down by 50%. This week it should be lower, just not sure how much, will find out late Friday. If it follows the last time it should go back up the week of infusion.
My brother came into town today. Have not seen him in about 3 years, so have been busy cooking for him. Did a eggplant casserole. I am also making. crawfish bisque for him. I made the stuffing and stuffed all the heads today. Tomorrow I will make the bisque and add the stuffed heads. I don't know how my Mom did it all at once. I have to do it over 2 days. Good thing I only see him every 3 or 4 years, I only fix it when he comes into town. Will also stuff some cabbage later this week for him as well. These were foods that our mom would fix, and I know his wife does not know how to fix any of it. Our other brother who lives in the are will be here also I think he is just showing up for the food. LOL My Hubbie is happy just to get all of the benefits from my cooking for brothers.
Blessings to all
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Late to the party, but I'm hopping on this board if I still can.
I started chemo (AC-T) on October 16. So, I'm now on day 8 after my second treatment.
Background: I was diagnosed in July, 2010 when I found a lump on my right breast that was estrogen and HER2 positive. Lumpectomy, chemo (TCH) and radiation later, all is well! Fast forward to this year when mammogram found something alarmingly large in my LEFT breast. How I didn't find it on my own with self-checks will remain a mystery, I guess. Triple negative, and this time, chemo first. So. Here I am. I've been through the hair loss before, and it doesn't stink any less this time around, but I was way more prepared for it. 9 years later, I feel like I'm maybe not quite as "bouncy" between treatments, but still handling it okay.
Also, taking Claritin is honestly magic. The pain from the Neulasta shot last time (2010) was horrible, but with Claritin, it's so much better. I sure hope everyone is getting that advice to take Claritin from their oncologist!
After 2 rounds, I now know that day 7 is gonna be my bad day. Achy and ouchy and unbelievably tired. But CRAZY how much better day 8 is! I feel like a real human again
I have 2 more AC treatments, then 12 weekly Taxols.
Onward and upward!
andinw
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day 7 post TCHP nausea and diarrhea have taken over my life. I thought I was fairing pretty well but turns out the SE where just waiting to set in.
Hope all you ladies are doing well
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I had my second chemo session today. Had a minor reaction 8 minutes in. I remember a previous post that you could have a reaction the second time around even if you had no reaction the first time. So I made sure to ask the nurse about it. Got short of breath and flushed face. They gave me more Benadryl and a nebulizer and everything went smooth after that. I am not going to take any shots this time. I was happy about that!! Just will check my WBC next week. If it plummets then I will do 5 shots next treatment.
So far feeling really good. Shaving my hair tomorrow. And a massage. Rocking a $6 wig to my sons soccer banquet tonight. I will be so self conscious but I need to get over it.
Day 4-8 were bad last time but they adjusted my dose by 25% so that should help.
AK_btrfly I hope you feel better soon.
Radqueen: hope your weekend with your brother is terrific.
Andinw: hope day 8 is here now?!?
kell0 -
Off soon for start of 2nd phase. First dose of DD AC and trial/placebo. not looking forward to it, but let's get her done. Rainy and very raw here in RI. only 32 degrees. I had such a nice week off from chemo, some of my taste returned, muscle aches subsided some, only now to start again.
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I guess I am joining pretty late but have been active on the weekly Taxol thread. I started weekly Taxol for 12 weeks with my first infusion on October 14 so I have 4 infusions under my belt with 8 more to go.
I did have a reaction to the Taxol starting the evening of the 6th day after my first infusion that resulted in itching and hives over a good portion of my body. I called my oncologist and they were able to get me some steroids to help me deal with it and I was able to not miss my next chemo. I had to do 40 mg every day of steroids the first week, 30 mg of steroids the second week, 20 mg of steroids the third week, next Monday I will drop down to 10 mg of steroids a day and by the following week will be just on the steroids they give me during chemo.
My hair on my head is still in process of falling out and is pretty thin now and will be getting shaved off over the noon hour. I think that even the hair that has managed to hang on, is not healthy and breaking off easily.
I might have been starting to get some sores in my mouth a couple of weeks ago but the packet of information that they gave me at the first chemo treatment said to do a salt water/baking soda rinse 4 times a day and I think that has helped.
I get a little nausea but not bad. I can usually sip on a Ginger Ale and be just fine.
I hope everyone has a great weekend!
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Hi all - I just edited the first post to welcome ANYONE who wants to be here - but since most of this group started chemo in October, we're all about the same place down this path and those shared experiences help us all IMO. Hope that helps! Having this group has been so helpful to me this path month+! So please keep posting here.
Martaj - your pictures made me cry! So awesome.
I'm back onto TC Chemo #3 on Tuesday. Feeling ok this week except for the full body exhaustion by 5 or 6pm, and the horrible dry or runny nose (use AYR/saline solution for those horrible bloody buggers/nuggets if you have them, sorry TMI). Then yesterday the eczema-like little red bumps that are appearing broke out with fury on my chest, the onco nurse said it's an unlucky and uncommon but known side effect of Taxotere - hydrocortisone cream and/or Benadryl helped me.
My mantra of the week: Daily exercise and hydrating are my chemo superpowers. But man this is a hard marathon that I didn't sign up for... and chemo's hardly half-way through still for me. Grateful knowing that I am not alone in this marathon effort, so appreciative for this group!
For those of you cold-capping, I'm not sure if I shared that I talked to DigniCap about my hair loss (pretty much 60% of the top/front of my hair is gone now) and why should I continue the last 2 chemo sessions? They shared that the cold capping is preserving the hair follicles, it's just our hair that's falling out, so when it grows back (which could be during chemo), that it will be my hair color/texture growing back, not chemo curl or some other new hair style. Have a full selection of chemo caps now from Amazon (affordable, pfew) and going to my stylist next week.
In good news for the cause, my co-workers raised over $5,000 by asking our customers to round up their change at our registers in October for Breast Cancer Awareness Month. We're donating $2,500 to Zero Breast Cancer in San Rafael CA, and $2,500 to the Womens Cancer Resource Center in Berkeley CA. (We have six Ace Hardware stores in the SF Bay Area.) Yay team.
Sending you all hugs and wishes for a happy weekend.
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Phase 2 started yesterday. First round of four, AC and trial/placebo. Very long day, very long day. Did well. Up early this am due to steriods. Developed a cough middle of night, nagging and harsh, think it was from adriamycin or cytoxan? I will continue to monitor, no fever. I did forget to take my nightly nasal spray. Have a great Saturday everyone.
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do any of you look at your labs ? Do you have your lactate dehydrogenase tested? Mine has went up 100 since treatment. Kind of worried about it. All my other blood work was great. All my organs seem to be holding up well. I was very well hydrated too
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Michelle, I'm getting those red bumps on my hands and feet. I have reduced my steroid, and am wondering if I'm starting to get an allergic reaction (I'm on taxol). Are they adjusting your premeds at all to prevent a larger reaction, or is the thinking that this is mostly just a nuisance?
I do weekly taxol plus herceptin. Tomorrow is my next one. I also am getting over a bad cold, so I'm a bit nervous about how that's going to go. This is my second time around with chemo, and although it's a lighter routine than when I was originally diagnosed 10 years ago, I'm a decade older and going through menopause, so in some ways it's hitting me harder. I have the metallic taste and ringing ears, plus a bit of neuropathy when my hands get even a little cold. Lack of sleep is also a major issue this time around. Someone on another thread said you can't be done with chemo until you start, and I keep thinking of that as motivation!
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Brooklyn1234,
I had a bad Taxol rash. Started with 3rd infusion. I had it biopsied and results were Taxol reaction photosensitive. Finished the 12 infusions, rash now starting to subside. My scalp was the worse, with open sores and very itchy. My extremties and chest covered with red dots that eventully flaked off leaving scars. Thank god Taxol is over with. Scalp cleared up so can wear a wig or hats. I still have no taste what so ever, over whelming fatigue and some neuropathy in my toes. On second phase now of AC, Hopefully won't get that rash. So far have not. But do have extreme nausea and occasional vomiting of which I did not have with Taxol and Carboplatin. Like you, extreme fatigue from doing nothing. Do not sleep well at night despite trying to do light exercise such as YOGA several times a week. And walking dog twice daily. I just hope and pray this all works. I was doubting myself yesterday if going the chemo root is worth it. But, no other options being that I'm triple neg. 3 more AC infusion then chemo overwith, on to surgery and radiation
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Help. I need to know what's normal? Haha
I have been through my 1st 3 rounds of A/C and it has sucked! I'm now at an in-between day, what I call the days when the worst side effects are backing off, and I can finally address an added issue...a painful port. It hurts from the port site in my chest all the way up to my neck all the time...and when I move my shoulder it really burns/stings. At night I can't find a good position to sleep because of it. It is not red so I don't suspect infection, but is this normal? It's been in since 10/8.
Any advice or experiences would be appreciated. I swear everyday there is something new to learn about :-)
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DMHGF. I had my port placed on Sept 10th ad my 1st infusion on the 31 of Sept. It hurt like hell the first 3 weeks, had to sleep on my back elevated just like I did post mastectomy. The first time they accessed it it also hurt like hell, and they used the cold spray. The nurse said it was because the port area was still swollen. I also have a lump where the catheter came out my neck and wet back in. You can trace the cath from my neck to the port under the skin Access #2 still hurt but I let the cold spray go for a really long time, so it was not just cold it was almost painfully cold, but the stick did not hurt as much. This time #3 I used the EMELA cream as well as the cold spray and it wasn't as bad as the last 2 times.
If your port is still hurting would call the person who put it in. See what they thik.
So here I am day two post AC#3 just had some french toast for breakfast. Still taking the zoph. and phin. every 6 hours( just in case) drinking a lot of water and chilling like a villain It's cold here today 43*. The puppies did the fast walk today less than 10 min. They had their sweaters on, wanted no part of the cold gotta love chihuahuas
Just wanted to do a quick check in
Keep the faith and stay strong we got this...
.
s
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1st dose of DD AC has really whipped my ass. Spent day in ED getting fluids and change of nausea and vomiting meds. Felt somewhat better last evening, able to keep down soup. I have 3 more DD AC infusions to go. YUK. Will try to hang in there. I have never been so sick in my life. Fluids perked me up, I was really dehydrated. Only good thing was the neulasta did bring my white count up, but my hemagolbin still low. Looking forward to a better day today.
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16 days past 1st TC. I have felt about 90% normal the past few days so I’m super thankful for that!
Labs are still really low in the WBC so had my first shot yesterday of the Neulasta alternative that is everyday for 5 days. I definitely have the bone pain from the shot. Not constant but takes my breath away when it comes in waves.
Hair is holding strong still. Pretty shocked by that since in the past I have lost mass amounts of hair when dieting, under stress, hormone changes.... thought for sure it would fall out immediately 😉 but happy to be proven wrong so far.
DMHGF - I would call about the port pain especially if it’s keeping you up at night! We need our sleep to keep up our strength
Radqueen - love you had some French toast sides like a yummy treat for a not so queasy day! 43* is balmy compared to 8* here in Alaska I’m staying inside. But so glad you got out even just for a few with the puppies
Praying for times of relief for all of us!0 -
Greetings warriors I have a question. How low did your WBC get before your MO ordered the Neulasta? Mine has gotten as low as 2.5 but bounced back up to 6 the next week, I really don't want that shot if I don't have to have it. It seams like the SE are worse than the chemo SE I have been having.
It's day 3 post AC #3 and I've had no nausea probably because of the combo of the meds they give me with the infusion and the zop. and the phin that I take when I get home but have been very tired. Still drinking lots of water. Staying hydrated seems to be the key for me. Martaj so sorry to hear you had to go to the ER. I know it's hard but get that water in ya. I make it a point to drink at least 2 Lt. the day of infusion. (And yes am peeing every 15 min... also TMI) and once I get home 8oz every hour and switching up with poweraid and the water. I found having the water room temp helped with me drinking it this time.
Keep the faith and stay strong
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AK_btrfly - I am so sorry you are suffering from nausea and diarrhea.:( I hope you're getting support and advice from your chemo team. Dehydration is real danger when you're losing it from both ends, and you may need to go in for extra IV fluids. My MO and pharmacist told me that if I threw up just one time, call them immediately-do not wait it out hoping it gets better, because it definitely won't. They give me IV Aloxi with my T/C, dexamethasone 8mg (twice daily day before T/C and in the AM x4 days later) and I take Compazine 10 mg at the first sign of any nausea. This controls nausea so far for me.
Constipation is my main problem, and I take 2 Colace twice daily and SennaKot in the PM for that, but I had unexpected, sudden, watery diarrhea x2 days also (the first attack right after taking Colace!) and attacked it with 2 Immodium after each diarrhea (approx. 4 times) which stopped it, thank God. I would've called my MO if it continued that next entire day. Hope you're better by now. Hang in there baby! We can make it thru. Life will get better. Love and prayers for you all.
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RadQueen - I get the Neulasta after every T/C chemo. It's applied to my upper arm and it delivers a dose 27 hrs after, then I can remove it. After reading here that others are getting their blood counts checked in between chemo treatments, I asked why they don't do it? The MO says they know that my WBCs will pretty much go down to near nothing halfway between (1.5 weeks) T/C chemo treatments-even with the Neulasta. I did develop a sore throat and runny nose about that time before, but no fever and I checked it twice daily because they say go to the ER if temp is 100.4 or above as it can be life threatening. (I do use AYR nasal spray too for those tmi bloody hard boogers too though too!) So I'm just to watch my symptoms and report as needed. I'm just trying to make it thru this winter without catching the flu or a cold! Michelle949 - I LOVE your mantra! Walking and hydration! I gotta get out today since temps are in 30s - not single digits. I'm day #3 post second T/C and the steroids don't keep me awake and wired this time around. The fatigue is balancing it out, so more manageable actually. I've got same symptoms this time but they started pretty much day #1 this time. Taste changes, numb mouth, getting a little restless legs when I wake up in the morning, but at least I can sleep.
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Happy Friday! I am day 9 of second infusion. Things were much better without the shots. My labs yesterday were good! I went for a walk too. The biggest issue is constipation. I’ve been trying Miralax but not much success. Will keep hydrating and hopefully take another walk. Hope everyone has a restful weekend if possible.
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Hi Everyone - checking in 2 days post my 3rd infusion of Taxotere & Cytoxan.
Kkukowski - Constipation has been an issue for me since Day 1. After my first treatment and several DAYS of being constipated, I finally bought Magnesium Citrate. It was nasty, and I do mean nasty, but it worked. Thought to myself - I’m not doing that again if I can ABSOLUTELY avoid it, For my past 2 treatments, I take Senokot-S (dual action) tablets and so far, they have been working (infusion on Wednesday, tablets on Thursday, BM on Friday!). Keep hydrating and walking as that’s the advice my MO gave me too.
RadQueen- I’ve taken Neulasta since my first treatment. I take Claritin for 1 or at most 2 days and have little to zero bone pain. My last blood check 5 days after the 2nd treatment was “critically low,” but MO wasn’t worried as she said the Neulasta was kicking in. I believe I have one side effect from Neulasta which is a fever (lasting about 3 days). I can almost set my watch by when the fever will begin & end. I always follow the process and phone in my temps, even went to the ER during the first treatment. Now, I’m waiting to see if the fever hits tomorrow (which is the usual). Hoping not, but will be probably end up checking in with on-call docs again. Fever while on chemo is nothing to mess with, and Docs and Nurses have trained me well !
Take care everyone ! Love this forum !!
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Kaaadams - I was told at the beginning of my chemo that I needed to take 2 Senokot-S tablets every night to prevent getting constipation and so far I have done pretty well with that has worked with only 1 day where I had to take another one the next morning (or maybe it was two...I would have to look at what my MO gave me in my packet). I am doing weekly Taxol for 12 weeks and have had 5 sessions so far.
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Hello, I started the dose dense ACT treatment on October 23rd. Wednesday will be my third dose. I am using the Digni Cap and I still have hair. It is shedding a lot but I read that this happens and my doctor said I would have lost all my hair by now if I wasn't using the Digni Cap. I've been doing well on the treatments so far and find that the first week is when I have that weird/yucky feeling. The second week I feel pretty normal. I take clariton everyday to ward off any bone pain and also a probiotic. I rinse my mouth 2-3 times a day with warm water, baking soda, and salt to ward off mouth sores and haven't had any so far. Around day 7 after the first dose I had lower back pain but it went away in a day or so and around the same time after the second dose, I have right side rib pain. My doctor thinks its from Nuelasta and maybe it is but I'm not sure. If anyone else is using the Digni Cap, I'm curious where you are in the dose dense ACT treatment (every 2 weeks) and how your hair is holding up. If anyone is getting Taxol treatments be sure to ice your fingers and toes during the entire treatment. I will be doing that when the time comes.
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Has anyone had to stop taking Adriamycin or cytoxan mid treatment for side effects? and if you did, was there a substitution? Marta
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Hi guys, well day 6 post 3rd AC infusion. So far so good, no real nausea, just very tired this time. It seems like I have no energy for anything. I have to force myself to go for a walk with the hubbie and the dogs. Just want to lay around and veg. My WBC went up this week as per what they have been doing since the 1st infusion, just not as high. It usually drops in week 2 and 3 post AC. My MO has not even mentioned Neulasta to me. I wounder if he ever will? I see him tomorrow and will see whats next. Still have one more AC to do then the Taxol.
Stay strong..
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Thanks all for the port advice! I called the surgeon and explained that I had no swelling, heat or redness...just pain. He said to take Tylenol. I was already doing that so no relief. I almost feel like it shifted and is really poking out of my skin. I guess I'll find out if they have problems with it Thursday, when I get round 4.
Martaj
I seriously considered quitting a/c after this last round. Each one has come with worse and longer lasting side effects. They are out of options to treat them but just keep saying "it's just 1 more. You can do it" I'm not sure I can.
I was over 5 days in extreme vomiting, diarrhea, bone pain, shortness of breath and dizziness. It felt like an eternity! Even now, 10 days post a/c, I am still nauseous (no longer vomitting) and ridiculously exhausted. They think it may be a combo of chemo and Neulasta so I asked if I could stop the Neulasta. They said no, even though my wbc had been over 24,000 each draw. I wish there was an alternative to either of these but I'm being given no options, just pep talks about how I can "do this" I'm terrified of this "1 more time" If it is progressively worse like the last 3 I don't know how I'm going to handle it :-(
I seriously could quit if I didn't fear disappointing family and friends.
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DMHGF
11 days since first infusion of AC, clinical trial med/placebo. Fever again last night, no energy, short of breath even walking up a flight of stairs, pulse rate 120-130, still have occasional vomiting and nausea. Off to Docs this morning. I don't know if I can do this again. At this point I've never been so sick. Worry about pneumonitis.
Marta
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Oh Martaj!
I am so sorry to hear what you are going through. I would definately put my foot down as those symptoms for that long is not acceptable! I know I would not be able to handle it and they can't expect you to. I hope they can give you an alternative. Please keep us updated. I'll be thinking of you.((hugs))
Denise
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Martaj, I hope you were able to get some answers and relief today! I wanted to give up after my first infusion only because the shots were so painful. They totally took the shots away the second infusion and it went better. So I pray there are adjustments that could be made for you.
Today is my day 11 and I went to the gym and to work- some normalcy! Finally! Every ones advice to me earlier really helped clear my last issue- so thanks!! We are all in this together and I am grateful to have this community
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Kaaadams, thanks!
I still have diarrhea but the nausea has subsided. I ordered an inexpensive bidet toilet attachment to help with the raw skin down there from going to the bathroom too often.
Hair decided to make a run for it over the weekend. It's super thin now and falling out by the handful. I have a work event tomorrow and I'm having a hard time deciding if I'm ready to shave it and brave wearing my wig tomorrow or trying to curl and puff up the thin hair??? 🤷
2nd TCHP this Thursday
Martaj - those SE's sound crazy! I would for sure be calling my MO to see what they can do/change
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