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Starting Chemo 2020 January

Tallbev
Tallbev Member Posts: 2

New to any forum actually. Found a lump in late October while washing my armpit. I am so healthy, I didn't even have a primary doctor. Found a clinic, the doctor said it was a cyst, but he'd order a mammogram. I don't have health insurance. Texas does not have Medicaid unless you are a kid, disabled or over 65. I made too little money for help with the Marketplace. $739 a month with $8100 deductible.

The radiologist who read the mammogram wanted another one plus an ultrasound. I told him I was tapped and couldn't pay for that.

He said he was in the business of getting people well...and is treating me without payment. I presume they are looking for help. No one has said anything.

I can't fill in my diagnoses completely. Large (3+cm) with a large swollen area around it, also in several lymph nodes. The largest node is 1.5 cm. My breast feels like someone put a tennis ball in it.

Mother died of this same thing. Estrogen positive, progesterone positive, HER2 positive, I believe. I think all that makes it Stage 3?


So, the doctor has a class this week. I'm assuming they'll do a port the next week and start CAT.

Any tips on any of this?

Thanks for listening.

Bev Meade



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Comments

  • moderators
    moderators Posts: 7,687
    edited December 2019

    Dear Tallbev,

    Welcome to the BCO community. We are sorry that your diagnosis brought you here but glad that you reached out for help. While you are waiting for some of our members to respond you may want to check out this topic in the Just Diagnosed Forum that offers helpful links to those who are in similar shoes as yours. Our members might suggest that before you jump to any conclusions you start writing down your thoughts and questions to present to your doctor at your treatment planning session. Keep us posted and let us know how we can be of assistance.

    The Mods

  • bkerber
    bkerber Member Posts: 37
    edited December 2019

    Hi Tallbev. I had 2 separate biopsies in Oct. One was Her2 - and one Her2 + . I had a port put in at surgery, Nov 27 just in case the final pathology was Her2 +. It came back equivocal so they had to send it out for a Fish test which came back negative. I have been waiting for my mammaprint results and found out last week that I have a high risk for recurrence, so will be starting chemo Jan 14th. I hope everything goes well for you.

  • Tallbev
    Tallbev Member Posts: 2
    edited January 2020

    Hate that we meet under these circumstances. Turns out, I believe I have HER - . I start chemo 1/9/2020. I'll check back to say how the first ons goes. My lump is 9 cm and my lymph node is 2cm.

  • bkerber
    bkerber Member Posts: 37
    edited January 2020

    I do too, Bev.
    Do you know what chemo you are taking? I hope you do well next week. I will be a week behind you so we can compare any side effects we have.

  • Jlue
    Jlue Member Posts: 5
    edited January 2020

    I am starting chemo on Monday, January 6. TCH. I’m looking forward to chatting with others who are going through chemo at the same time.

  • Les8188
    Les8188 Member Posts: 7
    edited January 2020

    I start chemo tomorrow too. I will be doing TC every 3 weeks for 4 doses. Let's just determine now that this is going to be doable and done before we know it! I pray for peace and comfort during this for all - Jlue, bkerber, and TallBev and me too! I will let you know what I learn tomorrow and from here on out!

  • tromano
    tromano Member Posts: 4
    edited January 2020

    I start chemotherapy on Jan 14, 2020. I am terrified. I suffer from anxiety to begin with, so this is really adding to it. It’s the what if’s and the unknowns of the side effects. I had a lumpectomy on my left breast, stage 1 and removal of calcifications on right breast stage 0. One week after surgery, I had radiation (savi) 2x a day for 5 days. We thought that was the only treatment needed until the results from the Oncotype DX test came back. My recurrence number was in the high range. The oncologist wants me to have 4 treatments every 21 days. It’s the unknown that scares me so much. I know everyone’s cancer, treatment and side effects are different. I look forward to learning and sharing with all of you. I pray for strength, comfort an peace during this time for all of us.


  • Sunrisefish
    Sunrisefish Member Posts: 35
    edited January 2020

    Tromano, don't be scared. You got this. Check out some of the earlier threads... it's really not so bad. I'm a little ahead of you. I had my first chemo on Jan 3rd. I'm back at work today on 1/6 and I am fine. Just a little tired and my joints are a little weird feeling - but it's not that big of a deal. Remember there is nothing worse than the fear. Don't make yourself sick. Just tell yourself that you will be ok - because you will be. You're stronger than you think you are. I am also having 4 treatments 3 weeks apart - i should have the last on March 6th. There is a world of support here for you. We got your back.

  • tromano
    tromano Member Posts: 4
    edited January 2020

    Sunrisefish,

    Thank you for your support and encouragement. It means so much to me. I’ve been checking out some of the earlier threads and taking notes I see the oncologist tomorrow and have more questions since reading others experiences.

    My worst fear is the nausea and vomiting. That’s actually a phobia of mine, so it makes this even worse for me I’ve been dwelling on it. I shared this with the oncologist. She is going to run an anti nausea drip the day of my chemo and called in anti nausea medication. My treatment is Taxotere and Cytoxan. The day after I have to get the shot of Neulasta. In speaking with others, that shot is what gives the bad joint pain. They recommended me taking a Claritin the day of the shot. Some people said it helped, others said it didn’t

    The three meds she called in are Dexamethasone, prochlorperazine and ondansetron. I know one is a steroid, that I take the day before, the day of and the day after. The other two are for the nausea. Are you familiar with these meds? I’m someone that doesn’t take meds other than a multi vitamin and vitamin D My primary physician called me in a low dose of Xanax when I was diagnosed to help me sleep since my anxiety was over the top.

    Thank you again.





  • bkerber
    bkerber Member Posts: 37
    edited January 2020

    I hope both of you who started today are doing alright so far. I am going to be working as much as I can. If any of you are still working and ahead of me, Jan 14, could you keep me posted on how doable this is going to be especially the first week.
    I thought I was in the clear until my mammoprint came back high. grrr! Im ready to get started and get this over with.
    Thinking of you all.

  • HeartShapedBox
    HeartShapedBox Member Posts: 117
    edited January 2020

    Tallbev, so sorry you're going through this all without health insurance! I know it's all very overwhelming and confusing at this point, not knowing yet all the details of your disease or lingo everyone uses on this forum.

    Because you're hormone positive and HER2+, that makes you "triple positive" (I am too) and I HIGHLY recommend you also join the triple positive group here, as many of the regulars there (like SpecialK) have been around for years and are HIGHLY knowledgeable and helpful.

    As far as what stage you are, you won't know a pathological stage until surgery reveals exactly what's going on in there, but a medical oncologist can give you a "clinical stage" based on size of main tumor and how much it has spread within lymph nodes or elsewhere, after other scans like MRIs take place. Staging can be complicated, but this site has a great page explaining it

    https://www.breastcancer.org/symptoms/diagnosis/st... And be sure to check out the other info available here, there are moderator-provided links in the "just diagnosed" that can help guide you.

    The Dr who is being so generous with you, are they a medical oncologist? Do they have a plan for treatment and have they explained the process of where you go from here? I'm assuming they've decided on neoadjuvant (pre-surgery) chemo for you since you started this Jan surgery group. Feel free to private message me with any questions- I also am triple positive and had a larger tumor with lymph nodes involved.

    Good luck with chemo everyone! I finished neoadjuvant chemo at the end of Nov, and it can be hard, but you'll get through it!

  • Maddy83f
    Maddy83f Member Posts: 78
    edited January 2020

    I will be starting chemo in 2 weeks, January 21st. AC-T: 4 rounds of AC every 2 weeks, then 4 rounds of T, every 2 weeks. Sorry that we are all part of a group that no one wants to join... but I feel lucky to have this forum as a source for information and support.

    Tromamo, I understand your anxiety and am also taking Xanax. My goal these past few weeks has been to not allow "chemo" to have any power over me - I am trying to remember that chemo is just strong medication that is going to make me better. Unknowns are hard to deal with. I have been reading the other groups postings and have found comfort in them - from what I have read, it is important to stay hydrated, try and exercise everyday and call/contact your MO with any questions you might have about SE. I think it is also important to stay ahead of the nausea by taking the medications prescribed. Also seems to be important to start taking Claritin before the Neulesta (sp?) patch starts working in order to get the benefits of Claritin to negate the bone pain.



  • Les8188
    Les8188 Member Posts: 7
    edited January 2020

    I am on day 3 now after the first infusion. I am feeling pretty normal still. I am i am heading to work and plan to go to the gym this afternoon. I did not get the Neulasta because the oncologist said my blood count was very high and he thought it wouldn't be necessary. I'm thankful and hope that it was a good decision.

    So far the worst is the steroids. I gained 7 pounds in the first two days of taking them but have lost 2 so I am hopeful. My blood sugar is up too but I can adjust my meds for that. I started feeling a little nauseated last night so I am taking the anti-nausea pills they gave me.

    Bottom line: so far this is very doable. I hope and pray that it continues like this and that each and every one of you has as good as experience or better!

  • bkerber
    bkerber Member Posts: 37
    edited January 2020

    Les, good to hear you are doing well. Do you know why you gained so much on the steroids? I don't know much about them. I did hear they made you stay
    awake. What is your experience with that? I hope my experience is as good as yours.
    Wishing you the best for the rest of your treatment.

  • Les8188
    Les8188 Member Posts: 7
    edited January 2020

    My understanding is that the steroids increase your appetite and cause you to retain water which both will affect your weight. I haven't had too much trouble sleeping but then, sleeping is my superpower, lol. I do seem to wake up at about 4 every morning and stay awake for a couple of hours. I attribute that to the steroids.

    The chemo effects did hit me last night. I went to the gym and just walked on the track. After 25 min I started feeling hot and weak so i left. I got something to eat then laid on the couch and slept. I was sooo cold! The night was kind of rough. Nausea, cold, and just blah feeling. I had weird dreams about feeling bad. Feeling better this morning but I am going to take it easy on me today.

    I hope that Jlue is doing ok and will soon let us know how it is going for her.

  • bkerber
    bkerber Member Posts: 37
    edited January 2020

    Wish me luck tomorrow with my first round. I am as prepared as I can be. So many drugs to keep up with Shocked
    Hope all of you are doing good!

  • Maddy83f
    Maddy83f Member Posts: 78
    edited January 2020

    Bkerber - sending lots of good thoughts! You've got this! You are a week a head of me.

  • Jlue
    Jlue Member Posts: 5
    edited January 2020

    Thanks girls for checking in on me. I had my TCH chemo last Monday. I was prepared for days 3–5 to be kind of rough because that is what so many people had said. It wasn’t too bad. Some nausea, diarrhea, and fatigue. But by day 6 and 7 I was just feeling down and like i would never get my bounce back. Today has been good and I think I’ve turned the corner! Hope you are all doing well.

  • G123
    G123 Member Posts: 1
    edited January 2020

    Hello All,


    Starting TCHP this week. Any tips would be helpful..... Thank you.

  • melmcbee
    melmcbee Member Posts: 371
    edited January 2020

    Hello ladies. I hope everyone is doing well. I just started oral chemo Xeloda and I just wanted to hang with yall. I did infusion chemo 8 years ago. I also wanted to just give yall support and hugs. I hope you dont mind ifI stop in. Blessings to all.

  • Les8188
    Les8188 Member Posts: 7
    edited January 2020

    Days are up and down. The worst so far was the constipation (fixed) and the mouth pain. Swallowing is horribly painful. My doctor called in a numbing rinse that is amazing. It has xylocaine, benedryl, and maalox. I gives me peace and a feeling of normalcy.

  • bkerber
    bkerber Member Posts: 37
    edited January 2020

    Welcome to melmcbee and g123! Le8188, when did you start having the mouth pain and did you do any rinses from the beginning to try and
    keep it from happening. I know my information lady told me today that it may help, but may not. I did get the neulasta patch which will go off tomorrow. Hope I can keep the bone pain from setting in too bad. She also told me when I take claritin, to also take 2 advil at the same time. That was the first time I had heard that. Also said that when mouth pain started, it could be a sign that white blood cells are low. Guess I'll find all of this out in a few days. Hope everyone does well and improves as quickly as possible.

  • Les8188
    Les8188 Member Posts: 7
    edited January 2020

    Welcome to melmcbee and g123!

    bkerber the mouth issue started in my throat I think. I had a sore throat all along but that is normal for me (allergies/sinus). It turned not normal on Day 7. The pain in my throat was much worse and the top of my mouth, under my tongue, and sides of my tongue felt like fire when I tried to swallow. Day 9 I started running a low fever and when it got to 100.5 on Wed I called the doctor. They have given my antibiotics and I do feel a bit better today.

    I do the rinses and have from the start but I wasn't faithful in doing them after every meal. That may have prevented this. I am glad to see we are getting the same information.

    To all of us: Take care of YOU!!

  • dysonsphere
    dysonsphere Member Posts: 134
    edited January 2020

    I saw my oncologist today. Honestly, it's kind of a blur but after some scans I will be getting my port. He said I would have 4 rounds of 2 drugs and then 12 weeks of another drug. I didn't even ask which ones because I was in shock. But I just wanted to check in.

  • bkerber
    bkerber Member Posts: 37
    edited January 2020

    Morning of day 3. I did not sleep too well last night. Killer sinus headache. My brain feels a bit foggy this morning. My Leunasta shot went off yesterday so we shall see how the aches go. I have been taking the claritin and advil so I hope it at least helps. I can only take it once a day, so Im going to fill in with my regular 4 hour sinus medication which I need most every day anyway. I did notice last night that food was starting to already taste a bit blander than normal. Maybe a good thing because I am quite puffy. Had to take my rings off just in case. I am drinking a lot of water and peeing it out, so hopefully it will taper off soon.
    Thank you all for keeping us posted on your progress. It helps to know what is normal and what isnt.
    Take care.

  • dysonsphere
    dysonsphere Member Posts: 134
    edited January 2020

    Is it safe to get Flu shot now before I start my chemo? I have been so busy and I would like to get it before I start!

  • Les8188
    Les8188 Member Posts: 7
    edited January 2020

    I had not had a flu shot and asked if I should get one. They said if I wanted to get one they could give it when I came in for my infusion.

  • bkerber
    bkerber Member Posts: 37
    edited January 2020

    Day 6. It has been a rough 2 days. The leunasta shot kicked my butt. Slept and moaned for 2 days. Finally coming out of it. I've had no nausea things dont taste quite the same. A little blander. My teeth are sensitive. I did get the swelling but it has gone down. Took senecot for constipation and it helped but had cramps for a while. I hope everyone is doing ok. For the record I'm 65 so I dont know how that affects my se. take care everyone

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited January 2020

    Hi, I am popping in to let people new to chemo know how much a brief semi fast or fast can help to reduce SEs from chemo. The doctor who has developed this is Dr Valter Longo at USC. There are human trials happening now. But in mice, the uptake of chemo was better after fasting. A brief fast tells your healthy cals to hunker down and makes your cancer cells very "hungry" right before the chemo hits.

    For me my worst SE was constipation, and having very little food going into chemo day helped enormously.

    The basic gist of the Fasting Mimicking diet is 5 days, 1200 cals the first day and 800 for days 2-5. Day 3 is chemo day. The foods you are allowed to eat is about 1/2 fat, 1/2 carbs, and a small amount (10% of day's calories) protein. What this looks like are 3 250-350 calorie "meals," Largely salads, bone broth, veggies, nuts, light soups.... and one small piece of fish or hard boiled egg as the "protein."

    If you prefer, 3 days of water fast works the same way, with chemo day as the middle day. I found the light eating for 5 days a lot easier.

    I had a consult from an Integrative MO who had me on a very clean diet, an exercise program including interval training, and other measures. There are things we can all do that improve the SEs and possibly even the outcome of chemo.

    Wishing all the best to everyone on this thread! Keep walking, keep resting, and keep showing up. You will be out of these woods soon!


  • hfleming
    hfleming Member Posts: 1
    edited January 2020

    Hello all,

    This is my first time jumping in here but I did read some helpful discussions prior to starting my first chemo on 1/14/20. I’ll be doing TC x 4, and as other members have said, it is the unknown that is the hardest for me. Feeling ok so far. My infusion center does not offer cold capping and I found the whole process of doing it by myself overwhelming. In fact, this whole thing is overwhelming. I keep asking my husband if this is really happening to me! Looking forward to hearing more about what lies ahead. Thank you for listening.