Starting Chemo in December 2016
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I'm feeling awfully tired today but it is my own fault. I tried to do to much over the weekend. My next TCHP is Thursday so hopefully I can get rested up before then. I wonder if my counts are down. I have blood work tomorrow so we shall see.
CCNC - yes we are on the same track. I have seen my MO after each chemo and complained of the extreme fatigue. She seemed to think it is because my neutrophils are low along with rbc. Last time she checked them the RBCs are not low enough to need an blood infusion. I haven't specifically asked her about lowering my dosage but it might be a conversation I have to have. I live in constant fear that the chemo won't work. I guess that is the tricky mind games that come along with the big "c" word.
I am so jealous of all of you that are finishing up your a/c!
I am realizing that most of the hats I purchased will be to hot come May. I didn't think about how long it would take for my hair to come back in once this leg of the journey is over. I have gotten a lot of use out of the Halos of Hair I purchased from the tlc website. I use them under all my hats.
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Hey Dizzygirl! I have my 3rd treatment tomorrow/Wed. I have been trying to shake off the fatigue which I definitely felt more this time around. The difficult thing I find is decifering between chemo fatigue, winter/no sun fatigue, getting older fatigue! My husband also said he has been very tired for the last few weeks too! I am definitely going to take it a lot easier this time around especially for the first week. I just want to sleep off the first 5 days although I feel much better if i can get out for walks even though it's hard to do it!! Good luck on Thursday!
That's great news Chickens! Hope that is easier for you to manage and you will be done faster! Yippee!
Hope everyone is managing ok. I find these middle treatments harder mentally. It's great to get to a half way point but at the same time there is still a long way to go and I'll be switching to the dreaded Taxol after this round which will be a whole new ball game!
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This round is kicking my butt way worse than the first 2. I had to stay home from work yesterday because I felt so crummy (the last 2, I've been fine to go back to work on Monday). It's hard to even describe to people who ask how I'm doing. Everything just hurts or doesn't feel 'right' and I'm SO tired all the time - my stomach/GI was the worst yesterday, just constant cramping and even dry heaved/threw up in my mouth a little. Last week after my treatment, so many people were cheering saying "you're half done!" No, I certainly was not halfway done - I still had to deal with the side effects 4 more times! I'll consider myself half done when this round of SEs wears off - so the day before my next treatment, I suppose.
In High School, I ran cross country and there was a point about halfway - 2/3rds through the race where most of the excitement of the race wears off and your body is hurting and then it's just mental - you're just in your head willing your body to keep running, pass the next runner, keep a certain pace, visualize the finish line. Sometimes you just concentrate on your breathing and your footsteps and everything else just sort of goes away. I feel I'm in that zone right now - just in the mental part, willing myself to keep going no matter how much it hurts and visualizing the finish line.
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Jezikah- I hear you! I've also just had my 3rd chemo & Herceptin round and really feel rotten. Today is a week post chemo, the day I return to full time work. I initially thought I was doing great this time and even contemplated returning to work 2 days ago but it seems this round I get 2 periods of 'all time low' instead of the usual 1. My nostrils are raw from front to throat, I have sores in my mouth for the first time, my body feels just yuck, I can't sleep due to relentless hot flushes and though I only have one more full chemo round, the fact that it is in only 2 weeks is daunting. I feel like I need more recovery time. To top it off my neuropathy in my jaw has continued and today at work I struggled with fine motor skills with my fingers. I really hope it's just exhaustion and concentration problems because I really need to have functioning precise fingers for packing medication. My Mum said something so true today "look forward to Christmas". Such a long road ahead in my cross country race- I sure hope after Chemo that it's a downhill race to the finish line
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Shell - sorry to hear you're suffering worse this timeas well. My nostrils are raw and my fingers hurt really bad today - especially anything that put pressure on my nails. It was strange and I haven't had that SE the last 2 rounds.
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My third one was on the Thursday the 19th, I went to work Friday but went home at lunch time and was out on Monday. I still feel like I am dragging. I hope it doesn't get worse with each treatment. I know how you feel about the 1/2 way mark; I have 3 more and sometimes I feel I can't do 1 more. Sometimes I am tired of telling family and friends that I am fine and doing good and just want to yell out that I feel like crap! I am taking 2017 as my get better year and will be healthy feeling great in 2018. I just keep my focus on 2018, but still trying to enjoy some of 2017 while on this voyage.
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jezikah and mistyeyes- thinking of you both today. I feel a little better today after a better night of sleep at last. I think the Amitriptyline they prescribed for my jaw neuropathy was making my night sweats worse so I didn't take them last night and only woke a couple of times with hot flushes and general body discomfort. Hope you will turn the corner today too. While feeling so low last night I started talking myself out of radiotherapy. It's easy to make excuses for missing out required treatment when feeling crappy and just longing for return to a normal life routine and a body that doesn't hurt. Since my discovery of the tumour in September I have been so brave, even after my mastectomy my tears were so far away, but now I feel so fragile and I'm constantly redoing my eye makeup for work. I just need to get to next week when once again my strength and bravery should return.
Jezikah what are you using for your nose? I'm putting Vaseline in my nostrils with a cottontip and that at least gives a little comfort between the annoying nasal drips.
I absolutely love all of you. This forum is the only place that truely understands x
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Awww, thanks Shell. I love you guys, too, and so glad we have this place to talk and commiserate.
I put a little Aquafor in my nose and then just always keep a tissue handy for the drips. This morning, I woke up with dried snot all over my cheek and around one nostril that apparently dripped all night - gross!
And I agree with the tears - definitely more now. After diagnosis and surgeries, I was a rock, no tears, I was getting through this, no big deal. But now with chemo, it's totally different and I randomly cry sometimes - so when we went in for my neulasta shot last week, the nurse was asking about side effects and how I was doing. I just mentioned the usual - fatigue, nausea, etc, and the nurse looked at my husband and said 'is she telling the truth? is there anything else?' and he said 'well, she cries randomly a lot.' And then I just lost it and started sobbing... the nurse started talking about anti-depressants and all that and that it's totally normal for chemo patients to go on them for a little while during treatment, but I just don't think I need more meds. And it's usually the first week after chemo and then I'm ok until my next treatment...
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Shell72 and Jezikah - I use Ayr nasal gel for dryness and also use a Q-tip to apply it. It is a saline base gel just for you nose and can be purchased at most drug stores (got mine at Wal-greens). I do still get the bloody nose thing too, but it's not all the time.
Well, I'm off to my third round of chemo today. Not looking forward to anything but checking it off the list when I'm done. So, like everyone else I have my crying moments too. Last night was I started crying at just the thought of going back to the cancer center today.
I too am having night sweats (well also hot flashes during the day). Seems like I wake up about every two hours - blanket off, blanket back on.
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Just now checking in on everyone. The stomach virus has hit our house and just about wiped me out. Between getting it myself and having to take care of the kids, this mama is just about down for the count!
So sorry to hear that everyone seems to be suffering this week. It sounds like chemo has been especially rough on all of us this week. Sending positive thoughts to everyone.
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Hello everyone,
I started TCHP in December 2016. I am done with 2 rounds (4 more to go!).
SueIL07
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Gingkoleaf12------I agree with your thoughts on how others believe you must feel fine since you do not look emaciated from chemo! It can be frustrating as they do not understand that we may be able to do a few things for ourselves yet may not feel up to doing many other things that are needed.-----VERY HAPPY for you that your last infusion is on Tuesday!!! Mine is Feb 10th looking forward to it and dreading it at the same time since I had that week after with all the horrible side effects!
Chickensandgoats-----NOT the stomach virus......ughhhhh! Bless your heart! I'm sorry that hit you and your family. Pay special attention to you! If you feel the least bit worse go in for IV fluids! Hope you are better real soon!
ILSunrise------You must have been the one who first posted the Ayr nasal gel. It has been a life saver for me! I use it for my bloody nose. Wouldn't have made it without this soothing gel! Thanks! BEST OF LUCK today on treatment #3!!! May it go well. Will that be your last treatment?
May 3rd infusion was Jan 20th and on the 3rd day after treatment I experienced for the first time what feels like a thick swollen tongue and the roof of my mouth has a pins and needle feeling. Am surprised as my dose was adjusted due to the severe blistering of my fingers on treatment 2. Anyone else having issues with their tongue?
I also have had to take an extra pack of steroids for 6 days after each treatment------talk about weight gain! Even though I walk on my treadmill as much as possible, I am still gaining. I don't eat meat so what do I eat....veggies (no fried foods and no desserts). I know the bread is bad however after each treatment I have about 3 days of bread and crackers only and we all know why....stomach and GI issues. Then, back to veggies. I drink water and ice tea. I did have 2 sports drinks while sick. Am getting very down about the weight. Am afraid that being pre-menopause, which may be menopausal now after treatment as it can do that to us, it will be impossible to get off (oh and add Tamoxifen afterwards). When I mention it to family, I'm told that I should only worry about getting well
It's just another part of me that is not normal and makes me feel awful. Between my thinned hair (cold capping--but almost bald on top) and major extra pounds, I don't recognize myself.......and the crying begins. I want to at least look the way I did BEFORE all this started. Sorry....just had to get that off my chest.0 -
SueIL07- I am on the same medications as you TCHP and have finished 3 round and have 3 more to go. I thought I would be more excited after hitting the half way mark, this last one hit me harder and I have a cold so that probably made it worse. We can do this! Hoping this cold goes away and I will feel a bit more normal. (Normal??whatever that is)
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Hey everyone -
I've been one of those "lurking" here! I spent a good deal of time on this wonderful website early on and then burned out on information overload. I've read every post in this thread over the last few days and can't keep everyone straight, but I so appreciate the camaraderie!
I was diagnosed in November after finding a lump myself. I had not been very good about BSE's because I seem to always have some "lumps and bumps" - have even had providers send me for diagnostic work-ups in the past - and had a normal mammogram in June. I was as overwhelmed as most of you were and followed the crazy schedule of testing and consults: mammogram, ultrasound, core needle biopsy of tumor and axillary lymph node, breast surgeon, medical oncologist, general surgeon, radiation oncologist, second opinion on pathology and with second breast surgeon, breast MRI, echocardiogram. I had a port placed on 12/5 and started chemo the following week so have now completed two rounds.
I felt the port placement was worse than I expected - apparently they had to give me more medication during the surgery than they anticipated. It also hurt more afterwards but that seemed to be more related to the adhesive dressing because it was much better when I was able to remove that after 48 hours.
Chemo has been rough for me with many side effects. It's so frustrating to not be able to predict or plan for anything! I know that we are all different, but still ...
First round - I had aches and pains, terrible mouth problems, and low WBC's. I ended up hospitalized with neutropenic fever and was given antibiotics and Neupogen to bring up the cell counts. Luckily, I responded quickly and only spent 2 nights in the hospital.
Second round - They decreased three of the drugs due to my prior response and added Neulasta. I also sucked on ice chips during the two chemo drug infusions. Same pains on day 3/4 but much worse burping, reflux, heartburn. I felt like anything I ate just burned going down and I had persistent abdominal and chest pain with a lump in my throat. Thankfully, I was put on Prilosec and Carafate which helped relatively quickly.
So I go back to see my MO tomorrow and for blood work - I'm SO not ready for another round. I had visions of myself refusing further chemo. I worry about the possible problems to the healthy rest of me! I was told the second round would be so much better because of the changes they were making. I feel like it's a guessing game and I hate taking all this medicine. You wonder what is causing what!
Anyway - sorry for such a long post. I'll try to add to the conversation and not monopolize it! Just thought it might help to know where I'm coming from.
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Welcome SueIL07 and NotVeryBrave! Glad you have found our little group, but sorry for the reason you have to be here. Please feel free to share your experiences! We learn a lot from one another.
Summer2016 - Thank you! I am slowly feeling better. I am starting to keep down fluids and a little soft food so hopefully my strength will build up quickly. I'll definitely remember the IV fluids if things don't look better soon.
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Hi and welcome to both SueIL07 and NotVeryBrave! As Chickensandgoats mentioned I'm sorry you are going through BC too. Hope you find all the support you need. This board has been a blessing to me!
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Hi gingkoleaf, I feel you on the not being able to sleep. It hits me hard the first week so I do take the prescribed sleeping pills but just for week 1. But now I bought melatonin pills. They are natural. I'm not sure if they work yet because the times I have taken them it's late at night so not sure Igbo it's just cuz it's late and I'm tired anyway.
Hope everyone is feeling better. I have my 5th round of T/C next Thursday. I'm not looking forward to it since this last one kicked my butt.
Hugs e
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Hello all. Trying to keep up with all the posts. Have been feeling depressed lately. I got for my last ac tomorrow. Half way point. I haven't cried in a while. Having some bad dreams where j am having to say goodbye to my two small boys. Last night was so realistic k am still thinking about it. I hope this is all worth the fight.
As for dryness I use aquafor for my face and body. Saline for my nose and Vaseline. Mouth sores have been better this time around. But baking soda and salt with warm water helped initially.
Anyone sue essential oils for Nausea ? A friend was saying peppermint behind the ears.
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scaredasshell07, the answer is yes. This is all worth your fight. Your kids need you and this way you know in the end of this road you did everything in your power to fight. I'm in the same boat too. I just finished my 4th T/C but I have 2more. Many women only get 4 of my chemo regiment but my Dr wants to be aggressive. After this 4th one which kicked my ass I told my husband I don't want to do this anymore. But now that I might feeling better I am going to finish with the last 2 cuz I want to know I did everything i could for my kids.
Just know it's going to get better.
Hugs.
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NotVeryBrave - I am sorry you are having such a hard tine, Keep telling your doctors any side effects. They can help keep things manageable. I too have the heartburn and reflux, it is very uncomfortable, I do take something and it helps some.
Hoping your next treatment is better for you. I glad you wrote, here you have a place to share and someone is probably going through the same things.
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NotVeryBrave and mistyeyes, I found that any type of weight-bearing exercise helps immensely with gas, reflux, burping, etc. Running, walking briskly, jumping rope, cardio, anything where you come down hard on your feet. It moves the gas out, one way or the other. Think slamming the cake pan down on the counter to get the gas bubbles to rise to the top and escape. Same concept! You may not feel like doing it, but it beats taking more drugs, in my opinion.
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Bareclaws,- I believe that exercise is very helpful, physically and mentally. I work fulltime but have a park near so I walk the pathways there once or twice a day. I always feel better after the walk. I find when I get home I am too tired to do too much. The week after chemo I can hardly stay awake. Maybe I will just jump around the house. lol
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Thanks for your reply Gingkoleaf12! I will discuss this with my MO. I too have a huge balloon belly! Guess that is normal?!
Scaredashell------You are not alone with the bad dreams and fears. I don't know if this will help you and others but here goes..........I was fine after surgery thinking I didn't need chemo as everyone told me my surgeon, nurses, oncologist. It was as if the cancer was gone. Then, came the biomarkers that sent me running for 2nd and 3rd opinions----all of which were you need chemo. I thought I was avoiding radiation and chemo and in my mind it wasn't too bad if it was surgery only. Once determined that I needed chemo, the bad dreams and fear were off and on and growing. I started chemo Dec 8th 2016 and could not stop thinking 'what if' then on New Year's Eve my family member was killed on a hunting trip by an assault rifle that slipped in the middle of the night, fell to the ground and shot him while sleeping (age 30). I was reminded that I could be gone tomorrow from something else the same as I am reminded by 13 yr and 20+ year BC survivors that I could be here until I'm 90 or 100 but not without the FIGHT as they all had their treatment! Congrats on your Halfway point that is a major Celebration! Just think Spring is around the corner for us too! HUGS!!!
Bareclaws-----Because of you, I try to walk on my treadmill as much as possible. All I could think when I started chemo is if she can, so can I. Thanks for the inspiration and keeping me moving! Are you taking TC? Are you almost finished with chemo?
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Summer2016, good for you doing the dreadmill! I have to kick myself in the butt to get outside and walk/run, but feel like I'm coming back, very slowly. No, I'm nowhere near done. After a bad start, I had a month's delay, then switched to AC, of which I've only had two so far. So two more, then surgery, then Taxol for 12 weeks, then radiation. I still have a long road ahead of me.
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I wanted to share a photo of my fingers after my 2nd Taxotere/Cytoxan treatment. It began with my fingertips looking really red and then feeling extremely HOT! Days later they began to peel. No amount of lotion and no type has helped. Anyone else have this experience? After all the heat and peeling, the pins and needles and pain start. Often feel the inside of my throat, tongue and mouth feel they have been burned yet no peeling.
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Summer2016 - I'm so sorry about your fingers. I had tingling and hot feelings in my hands after treatment too and the skin did start to deteriorate a bit. I've done a couple things to try and help but mine never got as bad as yours did. I recommend buying a pair of moisturizing hand gloves (approx $7). You put on some heavy duty hand cream (I'll recommend a couple), then wear the gloves to bed at night. It really helped me turn around the cracked peeling skin on my hands. I alternate using the two hand creams I listed below. I also have been applying Jessica cuticle cream or oil every day to my nail beds. These have both helped a lot.
Here are links for ideas about these types of products
Moisturizing gloves (can get at Bed, Bath & Beyond, drug stores, Amazon)
https://www.bedbathandbeyond.com/store/product/pai...
O'Keeffe's Working Hands Hand Cream (more of a heavy duty lotion)- http://www.okeeffescompany.com/working-hands
Mary Kay Extra Emollient Night Cream (much thicker and almost like Vaseline but works well)- https://www.marykay.com/en-US/products/body-and-su...
Jessica cuticle cream or oil - https://www.amazon.com/Jessica-NOU-Nourish-14-2g-0...=sr_1_3_a_it?ie=UTF8&qid=1485608676&sr=8-3&keywords=jessica+cuticle+cream
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For those of you who have been talking about mouth sores, I too rinse my mouth 3 times a day with the warm water, baking soda and salt mixture. So, far this has worked for me and I haven't developed sores. I was told to avoid toothpaste with whitening in it, any mouthwash with alcohol or peroxide. So, I switched and started using Sensodyne to brush my teeth. It was much easier on the tissue inside my mouth than the toothpaste I was using before (Aquafresh). So, I think that has helped too.
I use Aquaphor on my lips for the extreme winter dryness.
As far as exercise goes, I agree with bareclaws and mistyeyes, it really helps to try and move your body at least 30 minutes a day most days of the week. It does help with the gastro and fatigue. I too burp a lot and feel the gas moving around in my system when I get some exercise. This also helps offset some of the constipation you get from the various drug cocktails we're all on right now.
Welcome SueIL07 and NotVeryBrave...you've found a great group of ladies that can help answer your questions, provide a shoulder to cry on and just help you "Get Better Every Day".
Well, I made it through round 3. I am thankful to say that this is the first time I didn't have shortness of breath when they started the Taxotere infusion.....thank goodness. Maybe it's because they actually started it at a two hour drip rate right off the bat and kept it that way the entire time. Anyway, now if the rash will just stay at bay and I don't have to take an extra steroid dose pack this cycle that would be excellent....we shall see.
Have a great weekend everyone. It's cloudy and gloomy out today...typical for January in IL I'd say.
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I want to share a mouth treatment that I learned from a nurse practitioner at my treatment center and it has worked for me when nothing else did. I tried the baking soda/salt rinse and that did nothing for my "burnt" mouth tissues. What has helped? Aloe Vera juice. I don't swallow it, but you can. I rinse with it. Get a brand that's just pure juice, nothing else.
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ILSunrise-------I have used O'Keefes religiously now will try the gloves and other lotion you have shared. Thanks for the tips!! And happy you are through treatment #3! Rest up!
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notverybrave- I too had a lot of heartburn second round. Tums helps. Small meals and apple cider vinegar with water shot on the am. Check online for the measurements.
Morin sores skewered for me with baking soda and salt and water.
Constipation was cured for me after first touch. I started drinking prune juice (small can) on day 1 treatment and every day after. By third day I could go easily. Constipation makes you nausous so that helped both side effects
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