Chemo starting December 2017
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Laura644, hahaha that's hilarious that you felt so good eating Chinese food as I did. It was almost the most delicious meal I have had in forever. I was definitely going crazy. Yes I had the same neulasta shot mine released at 5 and I took omit of at 6pm I think also on a 45 min timer. I'm not sure if taking it out later would have given you a headache Bc I remember taking a pic of mine and the meds was showing empty so it had already released. But the meds could have I guess given you the headache. But again i don't know im not a doctor so my opinion may be totally off. I definitely got a huge pressure headache when C released. It was awful nurse talked to the doc and they said they would drip it slower.
I'm not sure why I'm doing blood work one week post treatment I know she wants to see me to discuss side effects and follow up post infusion and she said she wants to see my blood work a week later to make sure it's all doing okay And I'm handling well. I have no idea honestly but I'll definitely ask her now.
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Hi ladies, I went in for my 2nd round this morning but couldn't proceed my neutrophils was too low. So neulasta was given and I'll only do it day after tomorrow. My DH took a day off with the plan-changed we went to the wig shop, got my hair buzzed (it has been shedding like crazy for the last 2days I'm tired of cleaning them) and got myself a wig and some ready made scarfs. The buzz did make my eyes wet. Only for seconds.
I now looked like a little monk.@Mindy, I can't agree more- mental attitudes make the difference. Yes, we should get ourselves ready for SE but that doesn't mean it will definitely hit us. Thanks for pointing out that.
@Laura, I'm glad you made it. I was,too, finding d 4-7 awful. Now I wonder if I should ask for a little more dexamethasone (they only give it d 1-3) Today I went for my 2nd round with confidence (even though it was deferred) I'm sure the fear will slowly fade away as we felt better each day...
And @Daniz, if you girls enjoy Chinese food why not give the soup a try. We Chinese love soup be it bones, dakon, lotus root, papaya, etc. They are nourishing and refreshing and absolutely"fluid-replenishing"
Rose (hariry)
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Yay, Laura! Sounds like you are holding on...Great attitude, my dear! Makes all the difference! Thank you...Yeah, well, it was all fun and games chopping my hair short (for a moment before shaving), and I even liked the shaved look. Now, sh*t is getting real! Ha ha. Little tiny hairs are flying off my head! Super patchy and cancer patient looking now. I actually wore a beanie in to work today for the sake of others, even though I said I wouldn't. I'm not sad, just like WOW! I wonder if I should just take it down to a #1 on the clipper. Eh, a few more days will do the trick, I suppose. I'm planning on getting a henna tattoo as soon as my head is smooth. Just a small one...for fun.
Hariry, I'm sorry you had to postpone treatment, but it is just what you need. I'm glad you and your husband made the best of it. As for the dexamethasone, I take it in the am day 2, 3 and 4. Then no more of that. With a Friday treatment, my best days seem to be Monday and Tuesday. Then, by Wednesday (today) I start to fade a bit. The first treatment, I didn't really take any of the other "as needed" nausea meds and paid for it on Thursday. This time, I'm being proactive! I took an anti nausea this am and a Norco (killer headache). I will take the anti nausea through tomorrow...I honestly wouldn't want any more steroid...Too much jitter for me.
The only update for me is that blood return on my port has been challenging. I've been able to get through 2 infusions, but went yesterday for a dye study. It was determined that I have fiber/tissue around/in/on (sorry can't remember the words). Seems injections are going OK, but nothing can be drawn from the port, nor can it be used for MRI/CT. Radiologist said it is up the to Onc. as to how to proceed. It is possible that the port will need to be replaced. DANG! On one hand, if it works, let's leave it be. BUT, I'm so early in treatment it would really be better for it to work as it should. Pretty soon, it will be accessed weekly. My main question is that if the tissue can continue to grow and cause issues. I suspect it could...That's it for now.
Have a great day!
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Diveslikeagirl- I'm Mindy too :-) Are you a Melinda or a Mindy?
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Hariry, I’m sorry to hear about your treatment being postponed. That’s tough but thankfully you will get to do it very soon and like mjb said it’s for the better. It’s god you were productive though. I still don’t know when to cut my hair. Aaaagh. Oh I do love soup so I would LOVE to try the soups. Which ones are real you good in your opinion? I’ll definitly try it. Soup sounds so good right now.
This morning was a bit tough we got ready for school to get into the car to find the battery dead and then on top of everything find out school doesn’t start until tomorrow. I’ve lost it. Otherwise just feeling tired and having some pain in my back and my right thigh area it’s pretty painful. But it’s okay I’ll take that over the nausea and vomiting any day lol
Mjb1018, I’m so sorry to hear about your port issue. That sounds so stressful and frustrating. I really hope that they can figure out the best way to help you and fix this issue. It’s hard without the port I’m sure. Would they do the surgery soon? I really hope they figure it out very soon for you!!!
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Oh no, Daniz! Trying to go to school on an off day. Practice run. Ha ha. Tomorrow will be better.
Good thing about my port is that is seems to be taking in meds just fine. So, hopefully, Onc. will say to just continue to use it as long as it is behaving that way. I sure don't want to spend a day in the hospital if I don't absolutely need to. Fingers crossed!0 -
First day back at the office since 1st chemo infusion and holiday break. Felt good to be productive and feeling normal. I know there will be days I can't get out of bed let alone go to the office so grateful for each day that I can.
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Wig #2. Didn't get this one cut, this is what it looks like straight out of the box. 0 -
sswp, you look amazing!!!!! So glad to hear you have had a good day. Today is my first day back for a full day, too. Whoo Hoo! Truth be told, I felt horrible this morning, but the meds turned me right around. I want to work as much as I can, too.
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Goodnight Folks how is everyone doing. Hanging in there right. Well Cycle 2 Chemo I think was a bit tougher than cycle 1. I felt sick for days 3, 4 and 5. Can't tolerate water it tastes so awful. I was drinking gatorade but that too has started to taste bad. The only palatable thing is anything with milk in it. Tomorrow is day 6 hope I feel better right now i am feeling like i'm not getting enough energy...any tips to get the energy up will be appreciated. I finally caved and got some xantax to sleep. Sleep had been eluding me 😨 Anybody done Cycle 3 yet how was the experience? Did anybody get the SE of their tongue going black? If yes how was that experience.
@sswp I like the wig.
@Hariry The support here is what helping me to cope. Just knowing I can ask a question and get useful info is a blessing
Take care everyone. Warm hugs all around from the Caribbean with lots of love.
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This is my wig, my friends named her Stella! Thank you all for sharing your symptoms, makes me feel normal.0 -
Swewing: great wig, looks very natural. You have inspired me to name my wigs too. Given that my name is Sylvia, in the spirit of misheard song lyrics, I'll call my wig Cynthia, and the other one Suzy Chu. CCR would be proud.
Dark13: thanks. I also had the overwhelming energy issue days 1-5, but it was at its worst day 3-5. Hope you feel more yourself soon.
Mjb: thanks and glad to hear that you had a good day at work.
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morning everyone,
Hi swewing you look stunning with Stella😉 ... And you look great- pink cheerful and glowing!
Sswp, where is the insertion site of your port may I ask? Those on the inner side of arms got stenosis/thrombosis (blocked)easier...according to the surgeon. Mine was put on the right chest wall going straight from inferior vena cava to the heart. And I think you should check with your vascular surgeon if the bad flow was recent probably he/she can fix it before the fibrosis becomes more. My personal opinion is that you deserve a good explanation and assessment and hopefully a canalization.
Daniz, we usually put lotus root or dakon (aka white radish)together with bones/marrow, dates, and slow cook for few hours. You may check with the kitchen/restaurant. Ask them to make one for you with less seasoning/salt.
Dark13, I find qi gong (relatively mild and slow aerobic exercise, suits ones after surgery/chemo) very helpful. I feel energetic, my pressure had been low (90/50 ish) but now it has been 100/70.... My DH and I have been practicing for the past 2weeks. Will keep you posted if it helps with my second cycle.
Love,
Rose (hariry)
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hariry: I actually don’t currently have a port. I am anxious to start pt to address the cording, hopefully it doesn’t get worse
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Sorry sorry my bad, overlooked, it's mjb's port which wasn't functioning well.... oh dear, chemo brain!
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LAMinders: I'm both Melinda and Mindy! I go by Mindy so I'm working on nurses and doctors to call me that while I get my infusions. But as we know, they MUST use your legal name and birthday repeatedly when assuring they have the correct medicine, test results etc. Before they hang my chemo there actually are 2 staff who ask my name and birthday. Even though hearing my given name over and over reminds me of being scolded by my parents, I'm a little comforted by how the quality routine is adhered to though.
Mjb, my nurse had trouble getting blood from my port before my last infusion and she tried her "port gymnastics" tricks that were successful. She had me get in several different positions, had me double over and cough and the one that worked had me laid horizontal, my port arm over my head and turning my face to the opposite side. Oncology yoga. I'm learning that veteran oncology nurses are worth their weight in gold. I would hate to have to go back for a new port too
Tomorrow is day 13 after my first cycle and I'm waiting for the hair to start coming out. I'm so impressed with how our group seems to be coping, even embracing the experience. I see poised, smiling women who accept that this is just another step in the journey and a symbol that the chemo is reaching the follicles BUT it is also reaching the cancer cells too.
Stay warm everyone!
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From what I’ve been told if you want to increase your white blood count, you can try beef bone soup. You can find it in Wholefood or Sprouts.
For red blood counts, livers help. Also I made red dates water that helped also.
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Hariry, my port is on my chest wall, right side. I know it goes to my heart, but I 'm not sure where it comes from.
The blood return has been an issue since infusion # 1. The nurse at infusion #2 had a tougher time. Thinking it was her, not really my port getting worse, but at least 4 other nurses plus the charge nurse worked on me. Diveslikeagirl, oh yeah...Oncology yoga! Ha ha. I've done it all! I hope to hear something today. If word is to just proceed, I think I'll do all the yoga, vacuum, stand on my head, etc. before I go in. Ha ha. Worth a try. At that point, I hope we are in just "go ahead" status.Swewing! There you are!
I've been thinking about you and wondering how you are doing. You look AMAZING! Wow, we are all such troopers! Beautiful and amazing in every way!Dark13, I'm sorry #2 was tougher on you. Stay on top of the meds, even if you think you don't need them. That has really been a life saver for me cycle #2. I was able to work all day yesterday, and planning the same today. Fingers crossed. Be good to yourself and just rest if that's what your body is telling you do to. I hear you about the water. It tastes so thick, sludgy and sweet to me! Yuck. I bought some propel before chemo and that is even worse. For me, drinking hot to warm water is much better, as well as carbonated drinks, but I'm starting to dislike my beloved ginger ale.
Thoughts to start my day....
I'm at official lab rat status. My hair is patchy, at best. My scalp hurt more yesterday than when it first started coming out. It feels much better this morning. The shower felt amazing on it! My thought of not wearing a hat outside the house has vanished. I even wore a beanie to bed. I'm OK with that. I would never wear hats before because they just messed up my hair. HA! Lipstick and makeup are fun. Accessorizing is fun.
...Most people are kind, loving and caring. Genuinely. I've learned that some are uncomfortable and say weird things...they just don't know what to say or how to say it. Then, I've felt avoided a few times. Not from those close to me, but it's a little weird. C'est la vie!
...One last thing...who votes for snow cone machines instead of ice chips during infusions?
Love and hugs to all!
~Molly
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hello ladies. Hope you are all doing well today. I have a question.
Today is day 6 post #1 infusion of AC, and my head has been feeling super weird. I honestly don't know how to explain it. I don't have a headache but I have this weird feeling and I'm a bit dizzy. Earlier I was very dizzy/lightheaded my eyesight is a bit weird too a bit off. Has anyone had this happen before? Im not sure if I should be concerned maybe I’ll call the doc even though I’m schesuled to see her tomorrow.thank you all
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HI Daniz,
I have had a lot of trouble with headaches and dizziness and light sensitivity. But not vision. My MO has a 24 hour number and encouraged me to use it whenever I have a question or concern. I hope your MO has the same. And I think this definitely deserves a phone call to put you at ease or give you instructions. You are in my thoughts and prayers. Laura
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Dives- I was born Mindy (not Melinda). I am also very impressed with the multiple sets of eyes verifying the right poison...l mean medicine... is being injected into the right person. I am glad they only use my first and last name and not my middle- otherwise I too would be looking around to make sure I wasn't getting yelled at by my mother!
Swewing- Love Stella! And love the idea of naming her. My wig is sitting on my bureau reminding me of the inevitable. Tomorrow is the 2 week mark when my MO said to expect my hair to start falling out. Hope my wig looks as good as the ones you all have!
mjb- My nurses said I don't need to suck on ice for my treatments, but I am still game for a snow cone machine!
Daniz- my head has been in a constant fog since treatment, but no blurry vision, although I may remember seeing that as a side effect on the handout I was given. I agree with Laura- if you are worried- call. Hopefully speaking with the doctor or a nurse will help put your mind at ease.
Paulette and Hariry- I made bone broth in my Instant Pot last week after reading it could help boost immunity. Threw some bones (with marrow) that I bought a the market in with some veggies and garlic. Very easy and loved knowing exactly what went into it. It made so much that I froze into multiple containers and, when I remember, I pull some out to drink. I figure I'll eventually make a broth based soup this week with the rest of it.
I am 2 weeks post treatment and am finally getting some more energy back. I worked for more than 4 hours today and even got a workout in with my trainer yesterday. Nowhere near where I was before treatment, but it felt amazing to lift some lighter weights. I woke up in the middle of the night with a nose bleed. Haven't had one of those in probably 10 year and never in the middle of the night. Finally got back to sleep and had a nightmare about losing clumps of hair with my scalp still attached! Sure enough as I was getting ready this morning, some hairs decided to jump ship in the shower and my bathroom sink. Brain fog has officially hit and I am having some issue with word retrieval. Kinda scary and very frustrating. Other than that.. life is grand. Gearing up for another set of labs tomorrow, then back to the MO on Thursday and Chemo the day after. Not looking forward to round 2... but this too shall pass. Truly appreciate all of your honesty and upbeat attitudes. Warm wishes from sunny (but chilly for us) Los Angeles.
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The other day when I was at emerg I didn't wear my wig, I wore a beanie and had no make up on. I looked like a cancer patient. My husband and I caught some looks from the other people in the waiting room.
At work, I don't trust the reactions of those who are uninformed so I wear a wig. I've seen their reactions to others who've had similar diagnosis before me (fear, gossip, misinformation) so feel I can't be open about my situation.
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swewing - you look AWESOME in Stella. funny, my wig came with a name on the tag - Ella!
LAMinders - I've had scalp pain for the last week and I'm only on day 14. And, I too have had weird dreams about my hair falling out. And, I have had blood coming out of my nose too, but my DH thinks it is because of the cold dry weather here in philly.
SSWP - you look very glamorous in your wig.
We are going to a big wedding on Saturday (200 ppl) and Sunday iI have a concert/dinner (200 ppl) that I co-organized for my church. All of my family and friends seem so concerned about my being in public, and exposure to germs - as if I am supposed to stay at home for 4 months? What are you all doing to protect yourselves against infection? Anyone wearing a mask? I teach piano lessons privately to a lot of young students. I usually go to their houses but now I have asked them all to come to my house and they cancel if they think they are bringing germs in. I have each student sanitize hands b4 the lesson and I wipe down the keys a lot. And I have used clorox wipes on door and cabinet knobs. We have children ages 6 and 12 and I am sure they will be bringing stuff into the house once "sick" season goes into high gear. Am I too cautious?
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Thanks Laura644. Today is day 14 for me. I remember from chemo class our immune systems are at its lowest day 7-15. When I was at emerg the other day (day 11) I asked for a mask at the triage desk and wore it for close to 4 hours. I also asked to wait in a separate room which they granted but they put another patient with me that was also immuno compromised from undergoing chemo treatment. The other patient was coughing the whole time I'm not sure what she was there for.
The next day I was at the cancer center (day 12) and didn't take any precautions. I've also eaten at restaurants, shopped and worked at my office in the last week with no precautions. I don't know if I'm being cautious enough but I can't stay home and not go anywhere when I'm feeling up to it. It's bad enough I didn't feel up to going anywhere the first 5 days of chemo.
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Whether or not to stay away from the crowd- that is the question. My DH got worried when I wanted to go to work (alternate days, 4hours a day) but I thought hey, I can't and won't stay indoors, at home for the next 6months! If I still bring the kids to the malls, to attend mass (church) and gatherings, then why should I be kept away from working? I am a doctor, doing skin cancer screening and treating some general skin problems. Probably that's why he's worried, that I might be exposed to germs.
I always keep aside a mask, whenever I sense someone not too health around I'll quickly put it on. I wash my hands FREQUENTLY.
I simply feel happy, feeling normal going to work. For that short few hours I don't feel I'm a patient. Have you girls read a book written by a neurosurgeon, died eventually of stage iv lung cancer? "When breath becomes air"... The author had been super positive. I was overwhelmed reading his story.
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Chemo#2 -doxorubicin going in
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hi all, loving the selfies! My hair is just starting to thin out so I’m getting fitted for a wig on the 11th. I hope it will look natural. I’ve been weathering the side effects ok and felt dangerously close to normal until two days ago when I had some pain in my abdomen and blood in my urine (ick!) I have to go in for more tests as they’ve ruled out an infection. Most likely a kidney stone chose this of all times to start making trouble. I hope it’s only that and nothing more serious. I’m worried the chemo has been too hard on my kidneys. I’m 6 days from my next infusion and I hope I’ll be able to handle it. Drinking lots and lots of fluids has helped so consider this your friendly reminder to drink extra water today. The nurse told me to divide weight in half and aim to drink that many ounces in a day.
I heard blood in the nose is normal - especially if you’re in cold and dry temperatures. Running a humidifier at night has helped me immensely. I wish this winter would ease up a bit, we’ve already had our pipes freeze up and had no water for 24hrs before we could get it fixed. I don’t want that to happen again!
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Good to see you again, EJean. That would just NOT be fair for a kidney stone to develop. And thanks for the water reminder. I understand some women have trouble with drinking lots of water because it tastes bad. Mine doesn't taste good either, but I am so disturbed(?) disgusted(?) by the idea of pumping these toxins directly into my veins that I suck down water at every opportunity. I want this stuff out of my body as soon as possible. There's platinum in Carboplatin, for Pete's sake!
Just back from my 3rd weekly infusion (Herceptin only) and I got a different oncology nurse who turned out to be a downer. My PA had given me kudos for getting in a lot of exercise this week (swim, yoga, strength). I was personally psyched that I seemed to have escaped bone pain from Neulasta. My WBC was high and I've felt pretty normal all week and today's WBC came back in the upper range too. I know this is just Cycle 1/6 but I'm feeling optimistic as I sit in this nurse's chair for my infusion. When the nurse asks where I am in my treatments, she goes off on how I'm just beginning and the fatigue will probably hit after my next full cycle and by then my hair will be gone, blah, blah. But she says it in what I'm sure she thinks is an empathetic tone (that's how my husband heard it), and all I can hear is doom and gloom with no consideration for the fact that everyone experiences chemo differently and maybe I WON'T have debilitating fatigue. She's probably been there for decades and just spews the same patter to most patients and really doesn't think about it. But for someone like me who is just starting and is trying to do everything I can so that 16 weeks from now I'm not a wreck, that talk doesn't help me. I guess it's a fine line they walk between keeping patients expectations real and still trying to encourage, but it did feel a little cookie cutter to me. I'd like to think if it were me, I'd do a lot more listening to the patient and less pontificating. Off my soapbox now.
Today is Day 15 after first full chemo and my hair is hanging in there. I canceled tomorrow's "shave party" with my best friend because the PA said that 2 weeks is an average and she has seen (not scientifically) that brownish-red haired women "may keep their hair a little longer". Now I'm worried it'll start to jump off in the middle of a work day next week and I'll regret not having just made a clean break to a wig this weekend. Like SSWP, I'd rather not have lots of gossip and misinformation going around, so I got a wig that looks a lot like my hair does now, although a little blonder.
Two more days until a "warm up" to 30 degrees! Flip flops all around!
Mindy
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Got my labs done. Apparently the shot worked... maybe too well. My wbc count shot up from 3 to 24 (x1000) in a week!. Normal range is 4-11. No more nosebleeds but can’t seem to kick the headache. More hair falling out. No bald patches yet but I get sad every time I see another pile of hair on my desk or bathroom sink.
Stopped by Target after work to pick up a few things. The mask brought on a lot of looks and a few whispered comments from fellow shoppers. Little did they know I was protecting myself from them, not the other way around. Too bad my mask didn’t cover my eyes- they must have seen me rolling them!
This afternoon I’m going to the gym again to do a 30-40 min weight training workout while my energy is up. Not able to do anywhere near where I was pre-chemo, but I’ll take anything right now.
Happy and healthy Friday to all you incredible ladies- wishing you a wonderful weekend free of SEs!
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Hi everyone, I started in December as well. Round 3 will be 1/15. Round 2 went a lot better for me than the first one. It was still plenty tough- the first 3-4 days afterwards were hell but I got back to feeling somewhat normal a lot faster. The biggest issue for me this time around were stomach pains and gas (one day it was so bad I couldn't drink water without throwing up because of the gas?). Going to remember to take gas-x on a regular basis next time to see if that helps. The first time around I had terrible acid reflux and they prescribed Protonix- the acid reflux is totally gone so that's a relief. I've been taking a probiotic too. I'm not sure if it's doing anything but the diarrhea wasn't as bad this time around.
Jasmine rice & Cream of wheat have been my best friend when the stomach pain is the worst. I also got a craving for Chinese food this time around, ordered some, and was able to eat my first full meal in days. I have no idea why it worked but I'll remember to follow my cravings in the future! I can't have caffeine while my insides are all messed up because I could tell it was having an impact almost as soon as I drink it. That was tough because I always said the best part of my day was every time I had a cup of tea. I can have some now but I'm keeping it at one small cup a day.
I'm still terrified of my 3rd infusion and mentally preparing myself in case that one is really rough again. I also forgot you're supposed to take steroids with food- I need to be better about it. I'm hoping next time around it might alleviate some of the pain because it's vaguely familiar to the pain when I took steroids after wisdom teeth removal and my stomach was destroyed for weeks afterwards.
I'm completely addicted to ginger candies right now as well. My stomach always seems able to tolerate them and they totally knock out the constant nasty taste in my mouth for awhile!
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