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March 2020 Chemo

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Comments

  • JP47
    JP47 Member Posts: 11

    Hi All! Had my first Infusion of TCHP Tuesday. Have the chills a little today but otherwise feel ok. Scared of coronavirus!! So scared to get it while getting treatments. A case was found in the area I live in. Scared for next treatment in 2.5 weeks since we have to be around people when we are in compromised immune states. Hopefully this stays under control for all of us just starting. ~ Julie P

  • etnasgrl
    etnasgrl Member Posts: 185

    Nooch…..I'm so sorry that you understand how I feel, but at the same time, I'm glad that you do because it helps to know I'm not alone. (Does that make sense? lol!) Like you said, one moment I've got this, the next I am a complete mess. I think once I get started, it will be better.....but right now, my emotional and mental wellbeing is all over the place.
    No, I was not offered Perjeta, just Herceptin and to be honest, I didn't even think to ask why.

  • etnasgrl
    etnasgrl Member Posts: 185

    Julie.....I have to admit, that I'm a bit concerned about the Coronavirus too. I think SO much of what is happening is overkill and fear mongering, BUT....we do need to be careful and take precautions. Honestly, I'm thinking to myself, "Could there be a worse time to start chemo??!!!" lol!
    One good thing is that my job is preparing all employees to work from home. They say we should all have access to work remotely within 2 weeks, if things don't settle down with the Coronavirus. Perfect timing! Now, if I'm feeling crummy from chemo, I should be able to just stay in my PJ's and work from home.

    Happy

  • Cassandra6430
    Cassandra6430 Member Posts: 22

    hey everyone

    Checking in. I’ve had extreme heartburn since day one of infusion. They’ve got me on omeprazole and Pepcid but it’s not working and it’s severe burning in my throat. I just drank some baking soda and water. Anyone have any suggestions it’s been miserable. And I also now am understanding a little bit of what chemo brain feels like and I don’t like it. 😢😢super struggling.

  • dup403
    dup403 Member Posts: 15

    Hi all, Corona is here in Alberta as well and yes has me on edge a bit.... we as well have quite a few closures, large gatherings canceled, some day cares closing. Hopefully people stay home and this virus is kicked to the curb. I am to start chemo TCH on the 24 th and have chemo class in the morning so I’m sure we will be told more info. I agree etnasgrl what great timing to be starting chemo...

    I too have felt like ya I got this and the next minute I feel like a puddle of mud. True fear of the unknown but need to power through the best we can.

  • Jettie
    Jettie Member Posts: 63

    Evening all, I started my chemo yesterday, with almost 6 hours in the chair :( So glad I had my port installed last week. Was back today for a udenyca short and an hours worth of hydration, and am for some reason wanting ice cream... go figure.

    On a side note when i had mentioned some mild burning at back of my throat yesterday, hey gave me extra benadryl and that seemed to help me ..


    *waves*.. *pulls up a seat and gets comfy*

  • etnasgrl
    etnasgrl Member Posts: 185

    Cassandra6430....I'm so sorry that you've got such horrible heartburn. Have you let them know that the meds are not working? Maybe there is something else they can give you or maybe give you a higher dosage?

    Hey Jettie…..welcome!! How are you feeling now that you've had your first infusion? Thanks for mentioning about the burning in your throat and extra Benadryl. Good to know!

  • JP47
    JP47 Member Posts: 11

    Cassandra, my pharmacist said she went through the same thing and to make sure you stay ahead of it. This was her biggest struggle during her chemo.

    Hi Jetti, let us know how you feel.

    Etnasgrl, I’m so grateful I can work from home too.

    Stay in as much as you can with the virus going around.... we do not need that. I’m home bound other than doctors appointments since it’s in my Chicago area community right now. Hopefully we don’t already have it.

    I’m feeling tired and a little foggy, mild headache and diarrhea just started.


  • Jks_Indy
    Jks_Indy Member Posts: 29

    welcome to the new ladies who have joined our group!

    I had my first treatment Tuesday with Neulasta on Wednesday. My problems now stem more from surgery than chemo. I have a bacterial infection in my Seroma so am on antibiotics. Struggling with swollen lymph nodes and sore throat today. I have had minor twinges from the Neulasta thus far. Bad upset stomach Thursday and today (even before starting the antibiotic). Kefir and oatmeal helps with throat and stomach.

    Hope you feel better Cassandra!

    My son, DIL and new twin grandsons arrived for a visit from Indiana and that brings me much joy in these scary times ❤️ We are basically home bound except for my medical appointments.

    Hope you all have a good weekend. Julie S

  • Angel_Eyez
    Angel_Eyez Member Posts: 6

    Hello everyone, I am newly diagnosed and new the hospital group. I too started chemo on March 4,2020. I am on dose dense AC and after my first round I experienced little to no side effects. However, a few days later I noticed moodiness, headaches, a lot of gastrointestinal issues (e.g., very gassy, heartburn, and infrequent bowl movements). I take beano and my oncologist recommended Prilosec so that has helped a lot. I had a little bone pain but taking Allegra daily for my allergies seem to take the bone pain away (not sure why). I experienced pain in my knees and mild neuropathy in my right leg and foot but pushing myself to do my daily walks took the pain away in a day. I’ve just been staying positive and pushing through to make myself stay active and healthy. The slight side effects I’ve had seem to be very manageable, I’m just praying that it gets easier with time. Chemo can be very hard on the body but by eating right and exercising it’s been helping me a lot with this treatment. I am praying for everyone and Ilook forward to connecting with each of you!!

  • JP47
    JP47 Member Posts: 11

    angel, did they tell you why you are in this protocol as a triple positive? You had surgery first then?

  • msmarie
    msmarie Member Posts: 72

    Hey March 2020 gals. I started chemo last year on March 29, but I participated mostly in the Chemo Apr 2019 thread. I had 20 weeks of AC-T.

    I came to wish you all well during this part of your journey. Try to keep positive but know it's OK to have some bad days. They will pass, you will get through it!

    I wanted to leave a couple of tips. Water water water! Staying extra hydrated really helps. Generic loratadine for Neulasta pain. Colace combo laxative and stool softener, get out ahead of constipation. I used a gentle mouthwash called CloSys and never had any mouth sores.

    I worked the whole time during chemo except for treatment days. For nausea I kept little bottles of ginger ale and would sip when I felt it coming on. I also got a wonderful gift from a friend, Stomach Soother Aromatherapy Inhaler, can find on Amazon.

    Taxol - I took R alpha lipoic acid and iced my hands and feet and had very little neuropathy. Please check w your MO before taking. I also ramped up on Melatonin for better sleep. My MO approved

    Cheering for you all. Be well! MM

  • etnasgrl
    etnasgrl Member Posts: 185

    Hi ladies!!

    Smile
    Goodness, trying to find basic groceries during this Coronavirus pandemic is INSANE! I've had to work all week, so was not able to make a grocery store run. I finally went this morning, after getting my taxes done, (Gotta make sure Uncle Sam gets his due, lol!), and holy crap balls!!! I don't ever remember the shelves being this bare, not even before/after Hurricane Harvey hit!
    I had a small list running of things I wanted to have on hand before chemo and thank God I was able to find every thing on my list.....Tylenol, Imodium, Stool Softener. (you never know which way you may end up!), Claritin, Gatorade, Oatmeal, and Ginger Ale. But other things we need for the house.....toilet paper, (thankfully I have a unopened package from my last shopping trip!), paper towels, bread, meat, milk, and other staples are 100% wiped out. Even the chip and candy aisles were totally empty. What in the world??!! This is just NONSESNE! Ugh!

    Cassandra.....how are you feeling, sweetie? I have been thinking of you and I hope by now, you have found some relief from the heartburn. Please update us when you can.

    Julie.....I hope that the antibiotics clear up your infection and you have no further issues. How are you feeling today from the Neulasta? It's been a few days, so I'm curious to see how you are doing. I hope well! Enjoy the weekend with your son and grandsons.....how precious!!!

    Angel.....welcome to the group! I'm so glad that the exercising is helping to reduce your symptoms, that's terrific! I do walk with a friend at least once a week, but was concerned that I wouldn't be able to once chemo starts. Hearing how well it has helped to keep you going during chemo, I think I may try to push myself to continue with it. Anything to help make side effects manageable!

    MM.....thanks so much for stopping by our group and for your excellent tips. Seeing someone on the other side doing well is SO motivating and hopeful. First starting out on this nightmare can be so scary and you never think you'll make it to the other side. It's nice to hear from of those of you who have thrived afterwards. You're a blessing!

    Much love everyone!!

    Hug

  • JP47
    JP47 Member Posts: 11

    MM.... thanks so much for the tips!

    Cassandra.... how are you feeling?

    Etna..... this really is crazy!!! We are totally homebound still.

    Day 4 for me since first infusion. Tired, a little numbness and tingling in mouth, hands, toes. Slight headache, slight nausea, have not pooped other than 1x! Agh! Ordered stool softener from amazon.

    Did yoga and took a walk today. Have a good weekend ladies! 💛

  • Jettie
    Jettie Member Posts: 63

    Hows everyone doing today?

    Its day hmm *counts on fingers* 4 - Personally I am on the fence on how i feel, you know that cant quite put your finger on it but somethings off.. guess it will reveal itself i the coming days, or go back into hiding.

    Hopefully all the insane shopping craziness will pass soon :)

  • byhisgracetwice
    byhisgracetwice Member Posts: 218

    Hi Ladies - think I belong in a start in April group since I begin on April 1, but I haven't found it yet. Might I ask y'all a couple things, please?

    I'm About to get a port and have first Herceptin. I've not had any iv or pill chemo or hormone therapy before. I have some severe allergies and I'm very frightened. CT contrast — first time I passed out and went into respiratory failure.

    Adear friend with a rare cancer had anaphylactic reaction to his first monoclonal antibody infusion. Herceptin also is a monoclonal antibody. His was made from a mouse protein. Do you know what Herceptin is made from?

    No other choices for him. What made it possible was the premeds and to slow down the infusion rate to 25 ml per hour. Since the amount for him was 750 ml, it took 30 hours to infuse. Infusion clinics are open only eight hours, so every three weeks he was hospitalized for the infusion.

    I've read the first Herceptin infusion is 90 minutes. How much Herceptin is in it? Is the amount infused the first time the same each time after?

    i also have an odd issue with abnormally enlarged pulmonary arteries. Heart and lungs are fine, it's just the two inch arteries going between that arethe problem. Did anyone have heart issues in the first treatment?

    Thank you and I welcome feedback from everybody else about port placement and Herceptin.

    dx in nov 2016 idc; bone metastasis on nov 2019; second on 3/13/20


  • etnasgrl
    etnasgrl Member Posts: 185

    Hi there ByHisGrace!! Welcome!

    Hug

    I'm sorry, but I don't have an answer to your questions, hopefully someone who does comes along soon to give you some info.
    I can totally understand your worries and concerns. If you haven't already, let your oncologist know! He or she should be able to answer all of your questions and I am certain that they are fully prepared to handle any reactions to the meds that you may have. It's important for them to know your history, so they can better prepare for what may happen. It also may NOT happen, so keep that in mind! I think sometimes we get so caught up in the negative, that we don't realize that not everything in this journey will be bad.
    ((((Hugs)))) I'm so sorry that you are in this situation!

  • byhisgracetwice
    byhisgracetwice Member Posts: 218

    etnasgl — thank you for your encouraging thoughts. I usually roll with the flow and am the eternal Pollyanna but this has me uncharacteristically off kilter. I’m sorry you are going through your challenges and hope all goes as well as it can for you.


  • etnasgrl
    etnasgrl Member Posts: 185

    ByHisGrace…..

    It is incredibly hard to be Pollyanna when facing this mess! If you are off kilter, that is totally okay. You are allowed to be off kilter. And worried. And fearful. We all know how that feels and we're all here to surround you with encouragement and support.
    I know that you are worried about a reaction and your worries are absolutely justified! Try to do as much research as possible, ask questions, and talk with your medical team. Once you have the info that you need, I'm hopeful that you will feel a bit better. Until then, one step at a time! ((((Hugs))))

  • Lala55
    Lala55 Member Posts: 3

    Hi

    I’m starting with the same treatment as you on Monday 17 th. I am also trying the cold caps and I’ll be following you closely to compare our experience. I hope your first session went well.

  • Angel_Eyez
    Angel_Eyez Member Posts: 6

    Hello JP47

    Well upon finding out, the primary doctor recommended that I have the lump removed first, followed by chemotherapy, hormonal therapy, then radiation, followed by the recommended Her2 drug treatment for 5-10 years. Not sure why exactly, as I may have needed to ask more questions but honestly I was a little in NUMB mode for about the first 2 weeks of the diagnosis. Hope this answers your question.

  • Angel_Eyez
    Angel_Eyez Member Posts: 6

    etnasgrl

    Thank you for the welcome! And yes I walk at least 2 miles per day everyday if I can. It has helped tremendously! I just push myself and get it done. Although I do listen to my body and when I can’t walk that far I go as far as I can to ensure I’m exercising enough.

  • etnasgrl
    etnasgrl Member Posts: 185

    Good Morning Ladies!!!

    SillyHeart

    How is everyone doing/feeling today?

  • helenlouise
    helenlouise Member Posts: 363

    By his grace, I had port placement last Thursday and it has been a bit sore and protruding quite a bit. I don’t have a lot of flesh under the clavicle. A friend who has been on lots of chemo has had three ports for a variety of reasons. She recommended getting a numbing cream from pharmacy and using it at least an hour or two prior to the chemo being administered. I’m going for that. I start chemo Thursday. I am doing herceptin, prejeta and paclitaxol week one. Followed by paclitaxol alone weeks 2 & 3. Then a week off. For four rounds. I believe they administer the first infusion slower than normal rate so they can monitor for reaction. Good luck to you and all starting chem this month.

  • Monicadc74
    Monicadc74 Member Posts: 2

    Hi ladies!

    I am starting chemo tomorrow and I am also very worried about the coronavirus outbreak... could there be a worse time? Anyway, how is chemo affecting everybody?

    I will be starting with Adriamycin + Cytoxam, how bad can I expect to feel after my 1st dose?

    Thank you

  • Nooch40
    Nooch40 Member Posts: 22

    Hello everybody,

    I have been thinking about everybody that has started chemo and hoping you are doing well. I know there are a few of us starting this week. I am getting my port tomorrow and I’m scared. I was scared before all this corona virus started. Yes, definitely get that numbing cream. You are suppose to put it on an hour before and put cling wrap on it to keep it on there.

  • Angel_Eyez
    Angel_Eyez Member Posts: 6

    Hello everyone, more about myself. I am 42 years old (turning 43 in May). I have 3 children, 2 boys, and 1 girl ( ages 20, 23, 24). I am a empty-nester and live with my significant other who recently retired from the Army last year and my pitbull, Primo. I currently live in North Carolina and was planning to move back to my hometown in Virginia until I received the DX which now pushes my timeline back at least a year. However, I know there is a silver lining in all of this and I'm just taking one day at a time. I had just finished completing my Master's degree in Clinical Mental Health Counseling last year and was really looking forward to getting my licensure so I can practice independently to help others, as this is my PASSION and I feel is what I was called to do! Even though I may have to put some things off, I do realize that my health is critical and I know the importance of self-care, so I take things in stride. I'm usually a very positive person and I truly believe this is an added benefit with this DX. I don't dwell on the "what if's," I simply live my life to the fullest daily!! It is really great getting to know others in this forum, as it helps with normalizing how others and myself are feeling and experiencing. I hope everyone is having a great day and that your infusions are going well.

  • Maddy83f
    Maddy83f Member Posts: 78

    Monicadc74: I just finished 4 rounds of DD AC and am starting 4 rounds of DD Taxol tomorrow. My experience with the AC: I drank a lot of water during the AC treatments - usually about 64 oz. I would have a yogurt before the treatment, just to have protein in my stomach before I went to infusion center. I usually took a long nap when I got home. The next day (Day 2) I usually felt pretty good - and started taking ibuprofen when my neulesta on pro finished. I have been taking Claritin every day of treatment, and have been lucky to not have any bone pain. The neulesta usually made me feel very tired on Day 3 & 4 - I either slept or just laid down. Other than that I have felt pretty good - just really focusing on hydration, eating protein and exercising (walking). I like drinking pelegrino with lemons or ginger ale. Mostly eating yogurt, bananas, eggs, oatmeal, chicken/turkey - fairly bland diet but that is what tastes good to me. Definitely eat smaller meals - feel very uncomfortable if I eat too much. Good luck tomorrow!

  • Monicadc74
    Monicadc74 Member Posts: 2

    Thank you so much for your advise Maddy! I hope I will do as good as you have. For what my oncologist told me, Taxol is easier on the body so it should be easy for you Good luck for you too!

  • Cassandra6430
    Cassandra6430 Member Posts: 22

    Good morning everyone,

    It has been awhile since writing. This last week has been extremely challenging on all fronts, both mentally, physically, emotionally and spiritually. But if I had to put my finger on the main concern it's that I have not fully accepted this is happening and have been in resistance mode in a sort of people pleasing manner. The intense unrelenting burning in my chest/throat has not let up. They say it is heartburn and I am now on 3 stomach meds, following a bland diet and sleeping elevated and only relief I get is from Tramadol. My insurance denied Neulasta so I was not able to start the medication they would pay for until yesterday and it is a daily shot for 5 days. What is scary is that I hope it is effective in helping boost my white blood cells especially with whats going on globally. I was able to get IV fluids, more steriods and nausea meds yesterday due to being dehydrated. Hence why I am up at 4:30 am my time. It has helped however. I am supposed to get a CT scan so they can look at my chest area better just in case. This is seriously crazy time for us to start chemo and often feel like "is this really happening?" I am very thankful that I live in a smaller town, I have a supportive husband and family as well as employer. This morning I believe has been important as I feel a shift emotionally that is needed. I am going to walk more, start my meditations I did on a regular basis before all this, connect and reach out instead of isolating, make sure to hydrate and find things that I can enjoy doing at home that I have not had a chance to because of living my busy life. Such as reading a good book, coloring in my coloring book, maybe breaking out my craft boxes and writing. I am so thankful you all share in this forum as I do not feel alone. Oh and ps as far as the port goes, I find I don't need the numbing cream. It's a quick poke and it's over for me. Not sure if that helps ease anyones worries. Yesterday I wasn't sure how I was going to do this for the next 5 months and today I feel like I can, So just for today I will move forward. Sending so much love and light!

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