Starting Chemo March 2021
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it’s been two weeks since my first treatment, and I’m feeling really good. My only real concern is a sore throat.
My hair is definitely patchy and coming out, but since I had already buzzed it, it’s a bit less dramatic. I’m not looking forward to it being all the way gone though.
Welcome to the new people. Let us know if you have any questions
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Chrystlx, happy to hear you are feeling better. I hope the sore throat goes away soon.
AC Day 8th for me, and still nausea and fatigue going strong. Called my MO and he changed my medication yesterday. I am anxious to see if they work. The hair loss hasn't started yet...
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Day 10 and I feel great. My MO says I should feel fine these two weeks. She gave me something for my scalp during a followup and it's clearing up quickly. The only thing is that my taste buds seem to have died completely. I couldn't even taste the mint in my toothpaste anymore...
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hi everyone. I had my port placed this morning and then went straight to first round of TC. Overall a very smooth ride but now I am home and my head is buzzing and I feel out of sorts. I keep reading where most people don't have major SE kick in till the steroids wear off. I am trying to plan when to have my kiddo though and it is so hard to know when my energy will drop! Thankfully her papa is very supportive right now so we can be flexible.
I was listening to a chemo meditation on YouTube on my drive to the clinic this morning. I am wondering if it's ok that I might post links in here for anyone else who may be interested?
Thank you all for sharing your ups and downs and support for each other. It really feels good to have these connections and conversations. Sending you all good energy for your healing and success!
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Love- boy, right from port placement to treatment! Crazy. Maybe give yourself til tomorrow or the day after to start seeing some side effects, everyone is very different tho. Mine started 2d day or so and were very noticeable til day 5 or so. 2 weeks out now from first TC and feel pretty good. Will see how it goes after next.
At day 14 I think my hair is all there, keep waiting for the falling out to start.
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darksparks, it is good to hear you are doing well!
LoveNow, wow, straight from port surgery to chemo. I hope it wasn't painful. I still don't have my port, I did my first one without one. I will have mine 4 days before second treatment. I don't know about rules, but it is nice to hear some calming music.
aviva5675, it is good to hear you are doing well. It seems it is mostly the first week that SEs are strong for most people.
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My port hurt so badly last night I couldn't sleep for hours
I ended up taking every kind of sleep medicine I could to get me dull enough to zonk out. Not fun. Sure am grateful I have it though as my veins seem to run away from nurses lately. It took them three tries just to get the IV line in my hand/arm yesterday for the port procedure! And that was after telling them to be careful because of my lymph node biopsies. Sometimes I wonder if going to a teaching hospital is not my best option....I have so many stories to tell just in the past two months of "fellows" botching my biopsies, procedures, surgery and communications.
But I am grateful to have health insurance and a top notch University on the cutting edge of research. Pros and cons.....
I received conflicting info on how to care for port incisions. Had two nurses tell me different things. One was that the glue is enough protection and showering is fine from day one, just not to take a bath. The other said I need tagaderm or saran wrap over it for a week. Any suggestions?
So far my GI is just a bit confused today. Just gave myself the Fulphila shot and took some Claritin to head off bone pain, fingers crossed tonight is more peaceful before the possible day 3 storm tomorrow.
Aviva- happy to hear your hair is still in place! Does your scalp feel any differently?
Aram- I will share some links when I find helpful meditations/music. I really experience a benefit from being invited to focus the mind and energy on positive communications with our bodies.
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My scalp feels normal. I keep tugging at various hairs to see if they come out! So far not, Im assuming in a few days this will change.
I had the glue on my incisions. No bandages. They said just leave in place, starting around day 10 it starts to come off on its own. I was told I could shower as normal, maybe dont let the spray hit the incision directly for a few days till starting to heal. I just held a wash cloth over it while there was more direct spray.
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LoveNow, I’m sorry you went from surgery to chemo #1, that sounds exhausting and painful. I think I was told that I could shower day after port surgery, but then I ended up being admitted and didn’t shower for a week. Does it say anything on your post op paperwork?
I’m on day 11 of TC#1, my hair looks the same, I worked all week, I’m sticking to my 10-30 minutes of walk/bike a day (it calms my mind). My one week blood work came back with elevated liver enzymes and low platelets so I go back next week and watch for symptoms. My weight did go up 7lbs in two days post chemo and it’s down 6 now, the MO says it’s water weight. My throat and mouth have been feeling sore/weird, my energy levels are better.
I hope everyone gets to enjoy the weekend in their own way, and good luck to anyone having treatment this upcoming week!
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Aviva, I like the idea of just covering with a washcloth to protect the area. I am very sensitive to tagaderm and get a rash whenever I remove it.
And GreenOutdoors, they did give me paperwork but it says to cover for a week and yet the radiation nurse was the one who said it could be uncovered. Maybe because I am on chemo they just want to take every precaution to avoid infection? Happy you are feeling better and have energy to go enjoy some outdoor exercise. But those blood tests sound concerning. Do most folks have a one week blood check or are they monitoring you for concerns? On my current schedule I will just have labs drawn the morning before my next chemo.
Hope you all enjoy your weekend too, and may you have a Happy Start of Spring!
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LoveNow, I understand your dilemma now, I like Aviva’s idea too!
I was pretty upset about the blood work results, especially the liver enzymes. I just have to wait and see what they are next week. I’m tired so I’m setting this aside for now. The hospital schedules blood work and visit with MO a week after each chemo treatment and the day of chemo, it’s standard where I go, I don’t know if it’s standard everywhere. Feel better and I hope you get a better night’s sleep tonight0 -
LoveNow- I am three weeks removed from my port surgery and I’m JUST getting used to it and sleeping regular on my side w/o pain. So, it will happen
Also, I’m day 17 of my first cycle, and I feel very good! My throat is better and energy level almost normal.
I did buzz my hair with a 2 guard last weekend, and I’m thankful b/c it’s definitely coming out. Quite patchy and I think I would’ve hated seeing the long strands clumping out.
I go in for round two on Thursday and I get my 2nd COVID vaccine Friday, so next weekend will probably suck, LOL. So I’m going to try to enjoy this one while I’m feeling good!
Best of luck to you all
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Hello to all of you courageous ladies. I am jumping in here two days before my first infusion (3/22) because I am so appreciative of all of the information I have been acquiring in the last several days and wanted to thank you. I think I may qualify for the honor of oldest participant on this forum - I am 75 years old and not at all sure of what I am getting into, On top of my ridiculous age, I also have one of the more unusual types of cancer known as Triple Negative Breast Cancer. It appears to be most common in African American women under 40 and I don't fit in either category. Because it is a very aggressive cancer I am starting out on two week intervals for my AC treatment. It remains to be seen if I can handle that. I am otherwise a pretty healthy and active 75 year old.
I can't tell you, though, how inspiring it is to read your posts and see what so many of you are dealing with (babies, toddlers, children of all ages, jobs) while remaining positive and looking to the future. It also helps to know that I am not alone in being frightened (terrified?) of the chemo and the side effects. I live alone and I do have friends nearby in case I need some help. Trying to take care of family responsibilities as most of you seem to be doing is truly formidable.
I plan to contribute to this forum as soon as I have more knowledge and information worth sharing. In the meantime, I'll be reading along and wishing all of you the best.
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You all will NOT believe what I have been through. I just spent the last 4 days in the hospital with an acute bout of perforated diverticulitis. Thankfully I avoided surgery, and am home now. If you care to read the details, see below.
On Sunday TC day 6, I started having some abdominal discomfort, crampiness. Not terrible.
Monday morning TC day 7, I tried to start my work from home day with severe periodic cramping and several trips to the bathroom where only bile stuff was coming through. So I thought I had constipation. I went back to bed at 10:30am with a heating pad and never left except to go to the bathroom. I thought about calling the doctor but I didn't have the energy. Finally at 8pm my husband insisted we call, and the doc advised to go to the hospital.
A CT scan showed I had diverticulitis with a micro perforation and my white counts were 0. I HAD to be admitted and put on IV antibiotics. My temp was 99.8. There was a possibility I'd need surgery to resect out the bad piece of colon, but because the ends were inflamed they would not heal if stitched together. They'd be left apart for 3 months and I'd use a colostomy bag. Then another surgery to close the ends up. Needless to say I cried over this prospect.
Tuesday TC day 8, I was allowed nothing to eat or drink by mouth, IV antibiotics every 8 hours, fluids continuously, Granix (pegfilgrastim) shot, heparin shots 3x/day. My blood counts and temp didn't change.
Wednesday TC day 8, my pain was subsiding and I graduated to a clear liquid diet. IV antibiotics every 8 hours, fluids continuously, Granix (pegfilgrastim) shot, heparin shots 3x/day.
Thursday TC day 9, my pain was still subsiding and midday I graduated to full liquid diet. I showed signs of allergic reaction to the antibiotics, so they switched them to two different ones that I received 3x times/day. Granix and heparin shots. Since I was able to hydrate myself I no longer needed IV fluids. My counts started rising, though not by much. I graduated to a regular diet midday.
Friday TC day 10, my pain was almost gone and I'm able to eat and drink just fine with no pain. In fact, my digestive system feels better than the weeks before I came in. Over night my blood counts shot up to past normal, and my temp was finally down 98.8. I would not need surgery (Thank you God!). I still received the IV antibiotics 3x/day and the heparin shots, but no Granix. I left at 9:15pm.
I will continue on two different oral antibiotics for the next 10 days.
My port was used for blood draws and all the IVs, and while it's different, it was way more comfortable than the ones you have in your arm. I thought I might have to shave my head while in the hospital, but I still have the hair today, TC day 11.
Chemo depleted my white cells to nothing and allowed an infection to take off in my colon. I knew I had diverticulosis, but I have never had diverticulitis, and I never want to have it again. Had I not gone to the hospital when I did the small perforation I had very easily could have increased, I could have become septic and gotten very sick, very fast, or even died. I COULD HAVE DIED THIS WEEK. This scared the ever-loving hell out of me, and I'm not so sure there will be a TC #2 for me.
Next week I will have a consult with my oncologist and we will talk about the nitty gritty details of all of this and how to move forward for ME. My thoughts are that every single chemotherapy patient should have a full body system workup prior to ever receiving their first treatment, and be asked about any issues with every organ in their body. For me if they had asked if I'd ever had a colonoscopy and if there were findings, I could have told them and I could have supplied that report.
Before I started the chemo I cried a lot about my fears of me being the one who has one of the rare side effects, or one that leaves lasting sequelae or that changes you for life. My fears were realized, so my gut instinct, my 6th sense was spot on. I will never second guess that again.
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I go to my first consult the last day of this month so technically I start in April but the process itself starts in March.
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Hi Chrystix, glad to hear you are feeling good. Are you doing any special regimens such as diet, supplements, fasting before &/or after the tx?
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Hi Suefourmet, welcome to the forum, all ages are welcome
. I am middle-aged so as you, don't have the babies, toddlers, family responsibilities others do. At least though, their minds can be occupied by that. Less time to sit around and lament. I don't have much support in my area so will be relying on my team social worker for resources. I am technically young but fear I may feel old really fast from the tx.
A huge commonality between us is the Triple Neg. I am meeting with my oncologist in a week and half so will start in April, not knowing the regimen yet. Cheers and PM me if you wish to connect. So nice to have this forum to come to with all these brave and courageous women.
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Kipepeo, so sorry you went though this and that your team didn't consider your history. They are supposed to, but many get used to following the routine medical protocols they don't think outside the box. I have a bonafide GI issue so am scared crapless of this happening. I have repeated this to the team over and over and will reach out to my GI to get him involved & for advice because I still don't trust the team even if you tell them info.
I am impressed your body stepped up to the plate and helped you avoid surgery. You are right, gut instincts are on key.
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suefourmet, welcome to the group nobody wants to be part of. I hope your AC treatment goes well. Drinking is very important. The day before, day of and days after chemo. I hope you get little SEs.
Kipepeo, what you went through sounds horrible. I am truly sorry you went through all of that. Chemo SEs are already hard and you had one that is not even supposed to happen that often. Are your blood counts higher now?
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Thanks, HopeHeal and Aram, This does seem like a friendly and helpful place for me to be right now. I wanted to include my dx in my signature, but it looks like the two choices are "Public" and "Private". No choice for "Only Members"? I'm pretty much a control person and this dx has thrown me into the land of chaos. HopeHeal, I will try to link up with you soon.
Be well.
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Yes, it shows how little in control we really are, hard as that sounds.
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Glad we can be here to help support you Suefourmet. It's a challenging time for us all and as you can see there is some real kindness, caring, and encouragement that flows beautifully on these pages. I wish you the best on your journey through this.
Kipepeo- Omg! what a miracle you are to have come out of that experience! Sounds terrifying to me, and yet you seem to have an even deeper trust of your body and what it tells you, which hopefully can only guide you more steadily into your healing. Sending you comfort for the trauma of a near death experience and hoping you can recover and rest easier now that you are on the other side of it.
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Heidi, thank goodness you are out of the hospital, no colostomy bag and ALIVE! What has happened to you is horrible. I hope you are enjoying your weekend at home and that next week’s conversation with MO will be productive.
Welcome suefournet, sorry you find yourself here. Good luck for your first treatment on Monday.
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Kipepeo - so glad you were able to avoid surgery!! That ordeal sounds terrible.
HopeHeals - no special diet or anything. I’ve been trying to stay active, taking walks on my good days. And I’m back at work since day 10. I’m a teacher, so that keeps me moving.
I’ve actually been eating way too many sweets! Since chemo, my taste buds went wonky, and that’s what tastes the best! I’ve had cake for breakfast TWICE!Hair update - very patchy. I can see my pale head. I don’t care for it
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Hair update, TC #1 day 13, woke up to itchy, warm scalp and hair coming out in small clumps when I gently run my fingers through it. I haven’t told many people about my diagnosis and I’m really not looking forward to going to work with no hair. Most likely my teen and I will be playing hairdresser later today or in a couple of days at the latest!
And TMI alert, hair down there also falling, took care of that easily!0 -
Crystal, I usually loves sweets but all I’m craving is meat which I hardly ever eat. I now eat meat every day when I onlyused to eat it once or twice a month. I’m fascinated by how different everyone’s side effects, reactions, etc are!
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Username changed. Was suefourmet, now heliosue. Decided to change when I realized my signature would be searchable. Sorry about that.
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TC day 13 update: feeling much better after my hospital stint. GI tract actually feels better than before...like weeks/months even before. Feels normal. I'm still tired and my legs are feeling less heavy.
Husband and I went for 2 motorcycle rides today. Yay!
Went to take a shower and gently ran a comb pick through my hair. Hmmm, clog the drain or shave my head. Girls I knew this was coming, but making that decision was tough. Once the clippers made that first pass, I just enjoyed the feeling. Took a shower. My head feels wet, but I guess it's just not used to the cool. I think my husband is traumatized though. He did the shaving and it bothered him.
Welcome to all the new folks. I'll catch up soon on stories.
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this is TC day 4 for me. last night was very hard. knees ached so bad I had to try to sleep with a hot water bottle between them. Felt like I had the flu, sore neck and shoulders, slightly dizzy and very fatigued. couldn't sleep till 4 am and then it was only in spurts. I had abdominal pains and took some senokot which led to some relief eventually. Took my temp at 730 and it was up to 100.5 so I knew I was supposed to call in (plus I usually run cool in the 97s)
Very scary for my first chemo treatment! I was told by on call oncologist to go to urgent care when they opened which I did but my bloodwork looked ok. They looked at my mastectomy incision which had separated a bit in the last few days, thankfully no infection. I am supposed to follow up with oncologist tomorrow.
Tonight I just feel emotionally raw, scared, sad and unsure of what will come next. Still have aches but they are decreasing thankfully. Only managed about an hour nap so I really hope I can finally rest tonight. I'm not good at being sick. This is hard!
Hope you all had a good weekend and could enjoy the Spring warmth.
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LoveNow, sending you blessings and healing. Glad you are feeling better, it sounds like your body is beginning to adjust. It got shellshocked but the body is good at balancing. How many times a week/month is your prescription? I start mine after the end of this month and have no idea what the schedule will be like yet.
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