Chemo starting November 2018
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Hope everyone is having an easy day!
Anxiouslady..I am doing 4 rounds of TC, three weeks apart. I am not icing hands and feet..hope I didn't make a mistake with that decision
What a strange night I had...no nausea, but horrible heartburn (and I'm taking Prilosec) which then turned into 2 1/2 hrs of hiccups, side effect from Decadron. Neulasta will kick in in about 2 hours, lets see what fun that brings. Honestly though, so far its not bad.
Be well!
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My issues are headache and nausea. The nausea pills are not working.
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My first was November 17! i’ve been feeling almost normal, thank God.. the first week i had minor headaches but then again i’ve always had them so not sure if its the A/C! Today i kinda had a “don’t freak out” moment cause I noticed more hair in my bathroom floor.. my wigs are here and ready but I was still kinda hoping I would be part of that small percentage who don’t lose their hair... oh well... might as well have some fun with the wigs!
My prayers going out to all of you.. we can do this, ladies!
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What nausea meds worked for any of you? Thats the only thing thats making me feel like I cant function normally.
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HopeBry:
IV Aloxi at the time of infusion, with Zofran tablets at home worked best for nausea for me, but the Aloxi caused a bad taste I hated more than nausea so I switched. I was also given compazine pills for nausea if the zofran didn't work but I never took it.
Dexamethasone also plays a role in preventing nausea.
I also fasted the day before, during, and after chemo, which might have helped, and sipped soda when needed there after. Some of my nausea in the days after my infusion was from low blood sugar. For whatever reason I stopped feeling hungry and would go straight to nausea if my blood sugar got low, so I had soda to sip and candy to suck on, and crackers to eat until I could get something more substantial.
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HopeBry- I started with Zofran but had headaches, so I switched to compazine during the day. I've had zofran since and it didn't cause a headache but wasn't sure. I also take Lorazepam at night and it seems to help me sleep too. My headaches were so bad at first and I was having trouble eating I was also prescribed Dronabinol which has helped. I was recommended to try one thing, wait 20-30 mins and then take something else if it wasn't working. Usually those have kept it under control, but obviously my center has been very clear about letting them know if things weren't working.
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WC3 - I haven't had an appetite. I told my husband last night that I realized part of my problem is I don't feel either hungry or thirsty and have to remind myself otherwise I get dehydrated and wasted.
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I'm on day 5 of the headache, and today was the worst yet. I've now officially been awake 36 hours, as I didn't sleep at all last night due to the pain. I'm a 9/10 right now and not hopeful for tonight. I am fairly certain it might be a sinus infection - I'm now getting some drainage, and the pain/pressure is in my cheeks, teeth, behind my eyes, etc. It's almost unbearable. I'm calling the Dr. first thing tomorrow. Hopefully they can give me something in my port to get rid of this. It's truly excruciating. All I want to do is take an ice pic to my head to relieve the pressure. I'm hoping my body will be tired enough tonight to simply crash, but I'm not optimistic based on how I feel right now. It's almost bad enough to go to the ER, but I know that has it's own issues. I'll ride it out somehow. And call first thing tomorrow morning. Early.
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Hazel-Nut, my doctor does CBC and CMP, although, after treatment #2, he told me I need not come back this time for a blood work check (we did this approximately 10 days after my 1st treatment). My liver functions went up, and I asked him about this, and he said it was normal during chemo. He takes blood before my infusions and this last time came in after my treatment started to tell me my liver function had gone down a bit, he was not concerned about that. My stepmom, who is a retired RN, goes with me and asks questions and sometimes I wish she wouldn't. I trust my doctor completely.
Jennie and Asaka, I hope you ladies are feeling better.
I have a friend who hasn't spoken to me much the last 6-8 months, who is all of a sudden being very friendly. My husband reminded me, she went to visit someone we knew (that she did not know well), when they had cancer. Just a friendly reminder to beware of people that might be looking at your narcotics. I only have hydrocodone that my surgeon gave me for my port. I do sometimes take one-half (and my oncologist said it was okay), when the Neulasta won't let me sleep. It's sad to think someone would want my drugs, but just be careful girls. I hope everyone gets through this week with a smile. Drink drink and drink! Ginger Ale is good!
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I have a generic version of zolfran. Does not help and prochlorperazine . Does nothing for me It sucks
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HopeBry - do not hesitate to call your doctor's office if you are sick or do not feel well. They have something for everything to help you. My nurse stressed this to me last infusion. Do not hesitate to ask for help if you are experiencing side effects. That Neulasta gave me cramps in my feet last time, and they had me start magnesium. My nurse stressed this because she does not want us to quit because of any side effect they have something to give us for. Hugs. Lisa
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JennieK - That sounds terrible
I hope they are able to sort it out. For about 6 days after my first round it was almost one continuous headache and it about did me in. I'm sorry you're struggling.MOCat - Thats a good point! They haven't given me any narcotics but I haven't really needed them either. I do have a bottle of Valium they gave me for my scans that I'm keeping around because lord knows I haven't seen the last of the medical tests but I don't actually need them right now. We don't have a ton of friends coming over but we do have teens in the house and teenagers seem to travel in packs these days. I had a whole mess of them in the house over the weekend and it really didn't occur to me to tuck away those meds which was foolish. I have a sensible level of trust for my teens but I should not have that level of trust in their friends and I'd never forgive myself if they managed to get pills from my house.
Round 2 of AC really has been a whole new world. Part of me was thoroughly convinced that the hullabaloo over the reaction I had during round 1 was much ado about nothing and that it really didn't affect me that much but seeing how I've done this round I'm realizing that my reaction to the Adriamycin probably hit me far harder than the adriamycin itself. I felt overall kinda puny and run down all weekend but nowhere near as bad as I did during round 1. I seriously wondered if I could keep going after the way I felt the first time, I didn't think I had it in me. I'm back to feeling generally adverse to all things related to food. My bag of beef jerky and box of rice crackers are back to being my best friends again. I'm being affected by smells a lot more this time, everything smells gross.
I miss my nostril hair. I know that's an unladylike thing to point out, but I do. I never appreciated it before it was gone and I swear to the good lord once it grows back I'm going to wear it in ringlets down my face and bask in the glory of not having a nose that runs constantly.
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Good Morning ladies, this weekend was rough. I thought I was doing ok then on Saturday, I just felt awful. Nothing specific, just like I had the worst hangover of my life, so glad I don’t imbibe any longer, lol. Probably pushed it a bit yesterday, tired of eating bland, so went and got Carne Asada tacos and rice (hate beans) and it went down pretty well, didn’t come back up. Fatigue and boredom are getting to me. For those of you working through this, major respect. There’s no way I could.
This may seem petty and vain, but I’m so disappointed with getting out of shape again after fighting to regain. I herniated my l5/s1 disk last October when I was just beginning to train for the LA Marathon. The nerve compression was so bad I lost all function in my calf - couldn’t do calf raises or tip toe on my left foot. Had surgery in January, began PT, Pilates and Yoga in February and started to run again in June and started to race again in August. I had just signed up for a training program for a 1/2 Marathon in February 2019, then this all started. Ive lost my muscle mass and too much weight to continue training. I guess maybe I’ll just train to walk it. I will come back from this too.
Thanks for letting me whine
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Hi friends.
Runningcats, HopeBry, Jennie, Lizzie, -I hope everyone is starting to feel better. Side effects really can be horrible.
My friend works for a breast doctor (not my dr) and the one piece of advise she gave me was to drink a lot of water. My doctor said to drink 40- 60 ounces...but my friend said try to 80. I did it!! I found drinking it room temperature instead of cold made it much easier...and I also used a straw. Just trying to pass along any little tips I hear!
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RunningCats - I get it. In the year leading up to my diagnosis I had really changed my lifestyle around and had gotten into great shape. I was doing spin class 3 days a week and yoga 3 days a week. I can't believe that less than a month ago I was in the best shape of my life. The weakness is overwhelming, I can't even hold a downward facing dog now. It's a bit depressing to think of all the lost ground I will have to make up but I'm still trying. I look like an idiot in yoga wobbling and falling all over the place but I'm determined to keep some sort of fitness up. I hope you're able to at least walk the marathon. It's the little losses of our old, normal selves that seem to hit the hardest.
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Hazel-Nut, thank you for the encouragement for everyone. I admire your sense of humor (your nose hairs). The TCHP dries everything up, I hate it when I forget to put Vaseline in my nose! Keep smiling and drinking (water)!! I'm saving a lot of money on beer and may never have another beer again.
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Saw the nurse this morning. Did CBC and sinus x-rays. White blood cell count down, but no sign of active infection. I convinced them that I know my body and an antibiotic was needed. One dose and three hours later, headache gone. Also taking my migraine meds at their direction. Antihistamines dry me up and create unbearable pain. Next go round I may need to avoid the Claritin and just take the bone pain.
My white blood cell count is down. But I'm seven days out of first infusion, so to be expected. I have heard conflicting things - does each treatment get worse or better? Or depend on the person like everything else?
I did get a few hours of sleep today. Hopefully I can sleep through the night tonight!
On another note, I've had my dog boarded for six weeks and was going to pick him up this week. I've decided to leave him through chemo - another 10 weeks. Hate to do it, but I'm just not strong enough to handle him right now.
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Jennie, my white blood cell count was down after first treatment too. I'm sorry the Claritin is hurting you. Please ask them if there is something else that can help. They ask me to take Aleve too.
You're going to get to feeling better. I've had two treatments of TCHP, and the week before I go again (I go every 3 weeks), I feel "almost" normal. Yes, everybody is different. You're asking the question I was asking last week - does each treatment get worse? I asked my nurse, is treatment #3 the worst? Yes, she said, because it "accumulates." She also told me that treatment 4, 5 and 6 will be better than #3, because my body will be used to this by then. She also tells me to take medicine for side effects, so please, ask them what else you can do for the Neulasta. I honestly don't think the Neulasta was as bad this time, but I knew what to expect. This is what my nurse told me when I started, once you know what to expect, it is easier, and she is right. If you have a friend or family that can help with your dog, maybe you could ask for help too. I would be willing to help you if we lived close enough. I'm keeping all you girls in my prayers. Hugs and love, Lisa
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I hope everyone is doing well or being close to feeling well.
I had my first infusion on the 27th. Everything went smoothly and ended up with a bad case of heartburn that night and into the next day. Tuesday also brought chills without fever...I would be fine and the. Just start shaking. I was able to go into work on Wednesday and Thursday, but Friday was awful! I had to get someone to drive me to do blood work as I felt so bad and kept almost passing out. Pretty much sleep the entire day away and into Saturday morning. Felling better and actually able to eat, some stuff, without getting sick. SEs were headache, shivers, and heartburn. Really hope the next infusion follows the same or better. I did rotate all my nausea meds at 4 hour intervals so maybe that helped
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Thanks for being so open, everyone. I can't imagine some of the pain y'all are going through. I'm praying for you. And nose hairs? I had to laugh!! I teach, and told students that I was going to breath through my nose as much as possible so I don't catch anything. I didn't even think of nose hairs falling out. YIKES! When do you use Vaseline in the nostrils? Is it during a specific chemo treatment or once hairs are gone? I haven't heard this one.
This morning was rough teaching. I didn't think I could continue. I barely ate any lunch. I took a Zofran and amazingly felt better in about 30 minutes. Was that nausea I was feeling (is nausea feeling tired, jittery, achy) or does this pill have super powers that I was unaware of?
I think I'm going to take 1/2 of a pain pill to make sure I get a good night's sleep.
Trying to decide: wig or no wig. I think I need to shop for one soon. The nurse said I wouldn't have hair by next Wednesday. I cut my hair short, but I'm not ready for it to fall out.
Two other things: my left arm is sore and has been. Is that normal (I know, what's normal anymore??) It's freaking me out because it's a sign of heart attacks; yes, I'm paranoid. The other thing (my mother would die if she knew I was publicly stating this) is my privates, yes, down there, itch, throb, and burn. What's up with that? Am I dry? Is there a lotion I can get? So strange! Left arm and that place are driving me nuts (thank goodness I don't have any of those!)...
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I wrote to Hope Scarves and received a free hat and this note, "Lisa, we pass this scarf along with the hope and strength of a woman who faced cancer before you. Her story is inside. May her courage and our encouragement surround you. www.hopescarves.org
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Last night was what I will gently refer to as my emotional night. It's funny how I'm able to sync up the symptoms this go round with the ones I had last time. By the time I got home from work last night I felt like one giant bruise. Everything was sore and by the end of the night I was sooo emotional. I burst into tears in the middle of a conversation with my husband about random daily stuff and he just took it right in stride. I hate how out of control I feel about my body. I don't even recognize myself. I stood in front of the mirror this morning before my shower and it was like looking at a stranger. I look so sickly and worn. Well darn, I guess emotional day is going to continue on to today as well.
I had an overwhelming craving for biscuits and gravy last night. I thought it was encouraging because usually the idea of any food is awful so I decided to indulge myself. I stopped at the store on my way home to grab some ingredients and made a whole load of biscuits and gravy and they tasted like absolute crap. Straight up disgusting. Probably another reason why I was feeling so emotional. I really wanted those biscuits and gravy.
Duncmel - I'm glad the zofran worked so fast. I can't even function once I've taken mine and I'm jealous that yours works like that. I'm sitting here with waves of nausea up to my eyeballs, powering through with Good Thins crackers and hot tea because I have to work and my nausea meds put me to the point of nearly hallucinating. IDK about the other stuff. Maybe a yeast infection?
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I just use Vaseline because my entire body is DRY! Cracking, just have to bump my hand on something and it bleeds. Hazel-Nut, I'm sorry. We are lucky we have men to lean on. I have no hair and read a comment that when I have no eyebrows or eyelashes I will look like someone in the Blue Man Group. Yay!
The food smells at work make me want to throw up (people eating lunch). Toast is my favorite food this week. I spent most of the morning (thankfully, before work), having diarrhea. And then having to take Imodium because I promised my doctor if I had D more than 2x, I would take medicine. We have to stick together. Distract yourself - below - applies to me.
Probiotics (below) - I will say, one of the questions my stepmother asked my doctor was about probiotics, and he said recently, within the last 2 weeks, he read something that says they do not help you at all.
Here is something I ran across that might benefit us:
10 Basic Chemo Survival Tips
While undergoing chemotherapy treatment my biggest resources were friends who'd already experienced it. With their help I was able to live through chemo. It wasn't pleasant but I did it and since then a lot of my friends have asked what helped me so here is a short list:
- Ask for help.
And ask for exactly what you want. People who say "Can I help?" need to be told what to do because they don't know. Tell them, don't be shy. It was awkward and embarrassing for me to be so helpless and need so much, but it was much worse when I wasn't clear about what I needed because then I'd get sicker and sicker. Stop the cycle and open up, if they don't want to hear it or don't want to help, then at least you know and now you can look to other people to help. Keep asking, because somewhere there are people who can help you. - Take care of your needs when can.
If you have a good day when you feel strong, use it to take care of yourself. This is the time to be selfish, you are the only person who truly knows what you need and can feel what is going on with your body right now. Take a shower, clean your space up, buy groceries and prepare them so that if/when you can't move again, you've got everything you need. - Distract yourself.
Get some interesting books or put some engaging games on your phone so that you have things to do if you get stuck sitting on the toilet for an hour or two while your body figured out what the hell is going on. It may not happen, but if you find yourself spending a lot of time there, it doesn't help to overthink how you feel at that point. Days when I could not get out of bed or think straight were how I started drawing my swearing patterns on my ipad and they helped me enormously. Distraction is the key. - An L-Glutamine solution can help heal mouth and stomach lesions.
Gargle with (and drink) a solution of a tsp of L-Glutamine in water daily during the months of chemo treatment. This helps the soft tissue in your mouth, throat and stomach to repair itself so that the sores don't make eating painful. Cell duplication is prevented during chemo and that is why your mouth and other soft-tissue can't repair as quickly and needs this extra care. A powder-based version is essential so that you can rinse your mouth out and not just swallow it, since it will help your mouth and throat heal too. - Use a very soft toothbrush.
Only use an extremely soft toothbrush. They are sold at pharmacies or online. If you use dental floss or a regular toothbrush during chemo, your gums will bleed and sores can open up that make eating difficult. - Eat soft, cool foods.
If your mouth is hurting, eat soft, bland, cool foods to help. Eating in general might be difficult, in which case try to eat whatever you can that doesn't hurt or make you sick. Anything helps, your body will thank you for giving it fuel to get through this, even if it isn't enjoyable to eat or it comes out fast. - Incorporate probiotics into your diet.
Try to incorporate some healthy bacteria into your diet by eating fermented foods like yogurt or fresh sauerkraut to help your body digest food. (Obviously still avoid all of the "live" foods that could cause an infection while your white blood cell count is low, like raw fish or moldy cheeses — two things I really missed during chemo.) - Drink freshly juiced vegetables and fruit.
Juiced fruit and vegetables are packed with the vitamins and energy you need. This is slightly contentious since one of my doctors recommend avoiding all uncooked fruit and vegetables to avoid infection. Obviously if your white blood cell count is low, this won't be for you, so ask your doctors advice. I minimized the risk of infection by washing my fruit and vegetables in Bragg's apple vinegar, which sterilized it and added some more help to my digesting. My most helpful juice recipe that gave me the energy to get through a day was: half a bunch of kale, half a bunch of parsley, 2 or so carrots, an apple, some celery or cucumber, a baby-fist-sized hunk of fresh ginger. These are all ingredients which are packed with nutrients and anti-inflammatories. (I would have said to add turmeric but that is a big no-no. Turmeric can actually amplify the side-effects of chemotherapy [which is a mistake I made with my first treatment] so reserve that for the months after treatment is all over.) - "Chemo brain" is real.
There are some studies which suggest the hippocampus uses cell duplication to form new memories, so this would explain some of the fuzzy confusion that descends after a few treatments. There are breeds of mushrooms which can help cognitive ability and I found taking a supplement containing Lions Mane and Reishi helped enormously. Like the fresh juice and L-Glutamine mentioned above, this was something I took which had an almost immediately beneficial effect. - Go outside.
Being around in nature will help, but it doesn't need to be much if you can't handle much. If your white blood cell count is low, avoid people but still, go outside, walk around for 10 minutes, do what you can. At one point all I could do was get out the car and stand around because I didn't have the energy to walk along the beach or through the forest, but it still helped me to be near the ocean or big trees and see all that life teeming before me. It's a nice reminder of what we are made of when chemo makes life feels so distant.
These are the absolute essentials, just the things I can think of which made life possible for those months. Before I started any of this I researched it all and asked my doctors about it, and I strongly recommend you do your own research and talk to your own doctors about anything you're doing during chemo.
Everyone is different and if you can acknowledge that, you may have an easier time.
Before I started treatment I read insane websites (which didn't help) and helpful books which then led me to more helpful medical reports and studies I could read. Overall, websites like BreastCancer.org and the American Cancer Society were enormously helpful and I also got a lot of support by attending a group at We Spark for a little while before and after treatment. During treatment I could not make it there at all; I couldn't make the drive and I couldn't have sat up for 2 hours. Some people do manage it but I couldn't, which brings me to my last chemo survival tip:
Everyone is different and if you can acknowledge that, you may have an easier time. I still fight with myself about wanting to do more and get back to my old self, but learning to be patient and enjoy the moment is also useful and I'm trying to appreciate this opportunity to learn that.I wish you the best of luck and I'm sorry that you have to go through this.
https://medium.com/@soniaharris/10-basic-chemo-survival-tips-4383fc5e5dcc
0 - Ask for help.
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I had my first round of TC on Thursday the 29th. Thought I was doing well until Saturday came. Felt the fatigue come on out of nowhere. Thought nothing of it and went to a restaurant with my family and ate a fairly large portion for dinner.
Around 1am as I went to the rest room (peed 6-7 times a night for first 2 nights) I felt extremely nautious and dizzy as I got up off the toilet walking back to the bedroom. I passed out for a few seconds on the bed. My husband said I was pale as a ghost and called 911, ambulance came. Felt better and decided not to go to ER. Exactly 2 hours later felt like I was gonna pass out again. Splashed water on my face to snap out of it. Threw up heavy. Felt better. Tried to go back to sleep and 2 hours later, again, got hit with this cold/hot feeling under my skin and on my face. At that point it was 5am and my husband said “that’s it we’re going to the ER”. Went to my cancer center’s ER and they hooked me up to IV fluids and gave me IV compazine. They transferred me to an observation unit and gave me another bag of IV fluids. Took a total of 2 liters of IV fluids and about 12 hours for me to feel better. My labs drawn at hospital were all normal. The attending said I won’t see a drop in white or red blood cell count till about 7-10 days post chemo. Troponin and EKG looked good so it was a relief to know it wasn’t cardiac related.
I was feeling great yesterday, the day after discharge. Today I feel like blah, tired and fatigued, but nowhere near as bad as Sunday. No more nausea.
MO said they will prescribe Zyprexa (an anti-psychotic) for me because it has shown to help with nausea during chemo. I have to take it prophylactically for the first 3-4 nights post chemo. She doesn’t want me to take steroids for more than 3 days or take Zofran prophilactically due to possible side effects.
I really hope I don’t have this same experience for rounds 2, 3, and 4. It was an absolutely awful weekend, especially for my poor husband who was terrified.
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So here's an interesting update. I have a "personal nurse" through my insurance who has been with me weekly every step of this journey. We were talking today, and I told her that "except for an excruciating, horrendous six day headache, I sailed through the first session". She asked if I got Aloxi and Zofran. Why yes, yes I did. She said that in extremely rare cases, both are known to cause intense headaches. Alrighty then......
She said the good news is that there are literally dozens of nausea meds that don't have this side effect, and we should be able to change up. Not necessarily THE answer, but I'm extremely hopeful that it is. I told her I'd be happy to throw up for a week if I didn't have to deal with that headache! Now to find out if it's what happened......
On another note, we put my dog down yesterday. I was going to call the vet today and ask them to keep him, but they called last night and said he was fading. He lived a good 15 years, and I'm at peace with the decision.
I'm also cleared to return to work from my DMX. I can have my exchange surgery the last week in February. So excited. By April, I'll be back to me and waiting on my hair to come back!
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Jennie...I am so sorry about your dog. Sounds like he had a wonderful life, but its always so hard. Also, hope dr can change your meds, it is horrible to suffer like you did.
Asaka...you (and your poor husband) must have been so scared. I also had fatigue/exhaustion where I couldn't hold my head up. Finally its subsiding, and now I am so sleepy.
Night all!
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Jennie, I'm so very sorry about your dog. Many hugs to you. It is bad enough to have to go through chemo, and not have to say goodbye to our beloved friends, I am so sorry. I am grateful for your personal nurse to help you along this journey though, and hope you get the right medication to avoid those headaches.
Asaka, I'm so sorry you had to experience all of that, and the anxiety it causes your husband. Our husbands are such troopers, but I know they are worried because they cannot "fix" this. I hope you do not have to have this experience again. I have heard of folks having to go get IV fluids and how much it helps. Hope it does not happen to you again.
I got my Neulasta shot bill through our insurance. I have BCBS and the charge was $21,808.71. My chemo bill also has arrived, with total charge of $60,786.56. I take 4 drugs with TCHP, and he doubled the Herceptin and Perjeta round #1, so I guess that covers 6 drugs. I've reached my maximum out of pocket and guess I now qualify as a pre-existing condition. Going to get another maximum out of pocket in a month ($3900). My husband tells me not to worry about the money, but it sure is expensive to go through this. Hope everyone is doing well today and drink drink drink!
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JennieK - My insurance company reached out to me and offered a case management nurse to help me through this process and I'm still undecided if it's worth it. Do you think it's helpful? I'm hesitant to add in someone from the insurance company that could try and contradict the oncologists plans because of cost saving measures. I'm very sorry about your dog
I have the nasty white coating on my tongue now. I've gotten aggressive about salt water rinses and my biotene. The salt water really makes my mouth feel better, at least for a short while. In exactly one week I have to be back in the chemo chair and I still feel like hell. My mind is obsessing over the misery of having this be such a short cycle. 14 days between doses is miserable, 11 days just seems like some sort of high tech torture. I now know that halfway through day 6 is when things start turning around. My heart rate starts to get a little slower, the flu like fatigued feeling lessens, and my day starts to feel a little more manageable. Tomorrow will be better.
One of my coworkers brought me a poinsettia for my office this morning and it's lovely. People are trying really hard to be supportive and it warms my heart.
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Until we all meet again, I am at peace with the knowledge that they are happy and healthy and in a better place.
MB1
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Beautiful photo. Hugs.
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