Starting Chemo April 2020
Hey everyone! I'm starting the group for those of us starting chemotherapy in April 2020 (or the end of March, whatever works for you). Please join in!
I actually don't know my start date yet... I'm waiting to find out if I was approved for a clinical trial, which will determine my treatment plan and start date. The call/email should come this week, so I'm just anxiously waiting for it, but the plan is to start chemo next week. My treatment plan is 5-6 months of chemotherapy (AC-T), mastectomy plus lymph nodes, then radiation.
This is a super weird time to be dealing with cancer and the COVID-19/Coronavirus pandemic, but I think sharing the weirdness, frustrations, questions and positive thoughts with each other will be helpful.
Thanks! Much aloha!
Jess
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APRIL 2020 ROLL CALL
Username (name we can call you) - [location] - known or likely start date for chemo
- ARmom4 (Kelly) - [Arkansas, USA] - 3/27 / 4/17
- AuthorSpot (Stacey) - [Illinois, USA] - 3/31
- bazcla (Claud) - [Texas, USA] - 5/14
- Bon43 (Bonnie) - [Nova Scotia, Canada] - 4/6
- BostonGal (Allie) - [Massachusetts, USA] - 4/16
- ByHisGraceTwice ( j ) - [Texas, USA] - 4/1
- CCgirl (Nan) - [Massachusetts, USA] - 5/4 (but we're keeping her in the April family!)
- CocoB122 - [Kansas, USA] - 4/?
- Dawn1027 (Dawn) - end of April
- Debra1111 (Debra) - 4/15
- Dup403 - [Alberta, Canada] - 3/31
- Emmyvan - [New York, USA] - 4/2
- Faith2020 (Faith) - [Texas, USA] - 4/9
- HI109 (Emma) - [New York, USA] - 3/31
- hnsquared (Heather) - [Colorado, USA] - 4/1
- hog_co-pilot (Les) - 4/30
- Hurricaneblair (Erin) - [Illinois, USA] - 4/9
- ipenelope (Katie) - [Minnesota, USA] - 4/20
- JavaJana (Jana) - [Texas, USA] - 4/8
- jelloelloello (Jess) - [California, USA] - 4/2
- Jettie - 3/11 (started in March but there's room for everyone in the April family!)
- JustyneF (Justyne) - [Illinois, USA] - 4/6
- LiseC (Lise) - [Florida, USA] - 4/10
- Molly5678 (Molly) - 4/15
- Mudstick - 4/22
- NicoleRod (Nicole) - 4/23
- Oldest4Sis (Michelle) - [Delaware, USA] - 4/2
- pennythepest (Penny) - 1/3... then a break... then started again in May
- pjb61 - [Illinois, USA] - 4/20
- Shareliz54 - [Nova Scotia, Canada] - 4/24
- ShellyRM (Shelly) - [California, USA] - 4/22
- Smitty1963 - 4/24
- Sueshe55 (Robin) - [Florida, USA] - 5/26
- Sugar77 (Sherri) - [Mississauga, Canada] - 4/3
- sunandsea (Vilija) - [California, USA] - 4/30
- wahoomama87 (Kris) - [Georgia, USA] - 4/10
- zee72 (Zarin) - [Dubai, UAE] - 4/7
*** NEW! Join our private Facebook group! ***
If you're interested in connecting with us on Facebook, send a PM to wahoomama87 (Kris). Be sure to give her your email address that you use for FB. That's the only way she can "find" you to invite you, since we're not "friends" on there (yet)!
Comments
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Hi there! I am 29 years old and recently diagnosed with stage 1b / stage 2a breast cancer (T2 N0 M0). The tumor is located in my left breast and on the skin which little did I know was abnormal at the time. Her2 negative. ER is >90% and PR 30% with Ki67 at 15%. Grade 2.
I start chemo on April 6 for 24 weeks (16 rounds). After that I will do a partial mastectomy and then radiation. Long process but spirits are high.
In regards to the chemo I'll be doing 12 rounds of Taxol (one time per week) and then follow that with doxorubican and cytoxan. In addition, I've signed up for a study called I-Spy 2 and will receive which arm (5 total arms) I will get in the beginning of April. Basically, the I-SPY 2 will be in addition to the normal standard of care chemo, so add in another bag. However, one of the five arms is just normal standard of care so there is a possibility I receive just that. Eager to know.
To be honest, I am not sure what to expect. I know I will lose my hair and have a ton of side effects but I hoping to remain as strong as I can during that time.
Very happy to find this group as we go through this together. I am not sure anyone has gone through what we are about to go through since this pandemic can effect us so greatly.
Any tips or tricks are always welcomed here!
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Welcome! I'm glad we are starting a group! I've been reading some of the previous monthly groups and they seem super helpful. I added your name to the Roll Call at the top post-- please feel free to message me with any corrections or to remove your name if preferred. Thanks!
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Hi all,
I will start chemo in April too. I had a right mastectomy early March for invasive lobular carcinoma. I believe they are done staging me now and that I'm a 1B with positive nodes. Because of the nodes, I need chemotherapy, surgery to remove more nodes, and then, finally, radiation.
I will be learning more about how chemo works before it begins and perhaps that will reassure me about completing chemo and all treatments in these particularly challenging times.
My very best wishes to all in this journey.
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Welcome, BostonGal!
How was/is the healing from the mastectomy? After chemo, I will also have to remove my breast and lymph nodes.
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Thank you for your welcome!
I was surprised the healing of the actual incision was as "easy" as it was. What I mean is that I did not require anything more at home than up to four Tylenol per day, taken mostly proactively for less than a week. I had a stronger RX med but never felt the need at all to take it. I even slept well! I was relieved also that I was able to "step up" and handle the drain without a problem without anything "fancy" beyond my surgical bra and the special ring on it used to tether the drain. I will say I wish I had insisted on a additional bra or two to swap out the one I went home in! However, I'm (was...) very small and found that I did not need the bra after my first shower which I took two days after going home. See why below:
I made a "necklace" from doubled up dental floss and I secured the drain to that for showering and I just left the drain secured to hat the floss necklace until the next shower so it would not pull where it entered the incision. There's a tab and a ring on the drain that you use to secure it to a necklace or your post-mastectomy garments. I should have probably used a clean fabric band of some type instead of the floss because the floss kind of cut into my neck at times! (duh...) But since I was being relatively still most of the time, I was ok. Thank God for NETFLIX! I did work up to going out for walks about one half hour at a time after the drain came out. Yay! I had a little bit of seepage of blood around where the drain exited the body (probably from moving around too much!) but the surgeon had me send a photo of that to her and it was ok. Dried up right away and didn't come back. No problems after.
Now nearly three weeks post surgery, I continue to heal more and more each day. The incision looks better all the time and the stiffness from my arm is diminishing. I think it is important to know what and what you can and cannot do with your arm (I'm not entirely sure other than no repetitive movements, heavy lifting/pushing, etc.) so I just try to use common sense. The chest wall is unsurprisingly a bit sore/tender but I'm not concerned, it is not limiting from daily light activities and I don't need any meds. I still wish I could just roll over on my right side with abandon but at least I'm getting there! I would like to put a heating pad on it for some reason (comfort...) but that idea was nixed by the surgical nurse boo hoo...
Bless you on this journey!
PSS: I see that you say you are having nodes removed. I only had four removed as part of the mastectomy surgery/incision and so I did not have any "armpit" issues. However, I too will have axially dissection and I think that might be just a tad more annoying in a way because of the location of the incision...I hear that having a small pillow to put under your upper arm will help. That's what I'm thinking I will do...I'm sure your med team will advise how to handle all this!
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Hello Everyone...or is that to all 4 of us so far? I am glad to be a part of a newbie group, so we can encourage each other along the way. I am 46, mom of three teenagers, married for 25 years and live in Illinois. Just got my official diagnosis this past week and met with the Oncologist on Friday. As you all know...it is a LOT to take in....info, emotions, treatment plan, all the things. I do not know my start date, but anticipate it to be within the next couple of weeks. I have a PET scan on 4/2...have any of you had that? My treatment plan is TCHP once every 3 weeks for 18 weeks...6 total doses, I believe. Then surgery...don't know yet for sure what kind. Finally, radiation.
Jess...thanks for starting this thread.💗
Erin
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jelloelloello, JustyneF, BostonGal, Hurricaneblair - We just wanted to send you a warm welcome to the BCO Forums!
Jess, thank you for starting the April Chemo group. You're all in good company in this wonderful community and you're sure to receive great support as you follow your treatment journey together.
JustyneF and BostonGal, we recommend that you fill out your diagnosis and treatment information so that others can easily know your situation and better answer your questions. To do this, just click on 'My profile' (top right corner), then click 'My diagnosis' and fill out the relevant information. Do the same with 'My treatments'.
Let us know if you need anything at all. Best of luck with your chemo!
The Mods
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BostonGal: Thank you so much for sharing your experience and the things that worked for you. This will be so helpful for me when it's time for my mastectomy, and this is exactly why it's so awesome to have a support group from other people going through similar things.
Erin (Hurricaneblair): Yay, thanks for joining! You're right... only 4 of us so far... but I guess we're legit now that the Mods have written to us, haha!
I am 43, no kids, kinda feels like I'm the only person in the whole forum without kids??
You asked about a PET scan-- my doctor ordered one but my insurance denied it, so I did a CT scan instead. Thankfully, it came back with nothing else detected to indicate that the cancer may have spread beyond my breast and lymph nodes (armpit area), so I'm still on track for a single mastectomy plus lymph node removal. But my doctor did recommend follow-up scans for my thyroid and uterus areas, low priority so not sure when that will happen. I've actually never had diagnostic exams like these before and have never been hospitalized (remember, no kids so I never had a pregnancy ultrasound or went to the hospital to give birth), so it's incredibly strange to suddenly be a pro-level patient: in the past month-and-a-half, I've had 2 MRIs, a CT scan, a gamma ray scan, 2 biopsies, so many mammograms, an echocardiogram, and more blood draws than I can count. I'm trying to own that new identity in a way that makes me feel like I'm prepared and not scared to start chemo, as if I'm already a hospital pro and veteran patient. But, I'll admit all this COVID-19 stuff has kinda thrown me for a loop.
I can't believe how new your diagnosis is... I've been sitting on mine for weeks... so I want to tell you (and all of us) that you're not alone (even though it probably feels that way being quarantined!) and that we are all facing a fight that has been done successfully by so many people before, which means that medical science knows how to beat it or has some really good plans, and our fellow cancer warriors out there know how to guide us along the way. We are lucky and we are in good hands.
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Hello all and new member, Erin. Thank you for sharing your stories. This should be quite an adventure and very deep learning experience. Blessings to all!
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Hi everyone - I'm tentatively scheduled to start chemo this Friday, April 3rd pending my plastic surgeon giving the green light to my oncologist to proceed (I'm recovering from a seroma and infection). I'll be doing four rounds of TC. I've got two new wigs and am ready to get it over with. As you can see from my signature, I did this same regimen 10 years ago so I know what to expect. This is for a new primary in the same breast. It's like deja vu. I look forward to connecting with you all as we get through our treatments. I've popped on this site periodically throughout the last decade to provide inspiration to others going through it and now need to heed my own advice. Chemo is no picnic but it's doable. Thanks Jelloelloello for starting this group.
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Aloha everyone.
I’m ByHisGraceTwice but you may call me j. I was triple positive IDC Grade 2, stage 2, when first Dx in November 2016. Now Stage 4, after Dx Nov 2019 IDC had metastasized to my L acetabulum, still triple positive and grade 2.Did radiation in Nov & Dec. Melanoma stage I removed just before Christmas. Then Fri 3/13 PET to check on acetabulum discovered mets spread to lumbar spine 2-3-4. So ... I began radiation again and picked April Fool’s Day to do my very first infusion treatment — Herceptin. Look forward to getting to know y’all and wish you strength for what lies ahead.
j
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Hey all - I'm also newly diagnosed and probably starting chemo next week or the week after. I have a breast MRI scheduled for Wednesday and then will decide. Erin - looks like we are in a similar boat. I will also be doing TCHP for 6 cycles, once ever y 3 weeks. Then surgery. My plan is a double mastectomy - I don't want to be worrying about breast tissue down the road. I was also diagnosed a week ago (found the lump about 4 weeks ago), so my turn-around has been quick. Met with the surgeon last week and the oncologist today. You can call me Kris.
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Hi everyone,
I'm also recently diagnosed and scheduled to begin my first cycle of dose dense ac-t on April 1. I'm 46 years old and have been diagnosed with stage 2 grade 3 triple negative idc. My treatment plan is chemo prior to surgery, a double mastectomy in May. I am currently being tested for brca.
I have two sons, one who is 28 and I was unbelievably lucky for a surprise just about two years ago in May. So I have my 28 year old and a 2 year old! I had been having some pain in my axilla for a couple of weeks on the right—no lump just pain. I went in and saw a nurse practitioner who thought there may be an abscess. Fast forward two weeks with no improvement and I go back to my pcp. He thought he felt a small mobile olive size lump that was smooth— but since the pain, he ordered a mammo and an ultrasound of my right breast. When I got to the imaging center, they said hey, it's been 5 years since your last mammo, let's do both sides while you're here. She got a new script from my md. On the right, there were microcalcifications that needed a stereo biopsy (negative). Incidentally, a 2.7cm solid mass was seen on the left. Fast forward through biopsies, muga scans, CT's and a bone scan today... My chemo starts in two days.I'm a combination of excited and terrified. I am in NY state, not nyc.. but a little close for comfort. There are almost 200+ covid-19 cases in my county. I haven't left the house for two weeks now with the exception of medical appointments.
Trying to find food ( I have no idea what I'll be able to tolerate yet), and mints and little things like that is difficult right now. I won't risk going to the supermarket and I actually won't even risk my husband—who does not have to leave the house, going either , for fear he'll not only get exposed but more so bringing it home. I have a nephew who passed away 5 years ago after battling t-cell lymphoma, an rsv infection was the ultimate cause. So this virus and chemo is scaring the fuck out of me to say the least. Grocery delivery is slim pickings at best and pickup/delivery dates are days if not a week out.
Since we've been home the last two weeks and all hair salons are closed.. I had made the decision and to buzz cut my hair prior with my two year old. I was going to go In and get a pixie cut so it wouldn’t be so dramatic—but you know..covid. My husbands is buzz cut and we had been doing our two year old sons the same way for the last couple of months. I thought why not, let's all do matching cuts— my hair was pretty long and I was worried about my two year old being traumatized by seeing it happen during chemo. The last thing I need to think about while dealing with chemo is my toddler seeing me experience the side effects. So I decided to make it fun. I donated 16" of hair. I'm dealing with it better than expected I think.
My port is installed, and I begin this regimen the day after tomorrow. My initial visit for the axillary pain was feb 25. The mass was discovered incidentally March 8. What a freaking whirlwind.
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Emmyvan, my best wishes to you for your treatment! It occurred to me we are now all leading actors - stars- in one of the most important drama ever written. I too am scared...it is wonderful to have the inspiration of wonderful brave women - thank you. Boston Gal.
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Jess - Can you add me up top? I'm starting next week on the 8th. Rushing round getting the echo, the meeting with the nurse, the port, etc. Honestly, I'm more freaked out about the port than I am anything else!
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Wow this is great! I mean, obviously, not great that so many of us have cancer... but great to be connected and to feel like we have a virtual support group!
(And now for a little bit of a rant) This coronavirus crisis sucks, FOR SO MANY REASONS, but one surprising reason that none of my family realized would affect me was that I'm just straight-up mad that I can't go out. When I was first diagnosed in February, my doctors gave me info on a cancer support center that had meetings, free yoga classes, workshops for caregivers, etc., and I thought that this would be such an awesome way for me to deal with my diagnosis and upcoming battle. But all those things are closed. When I was first diagnosed, I had friends and family offer to drive me to appointments, hang out with me during infusions or while healing at home, drop off food or go shopping for me... not that I definitely needed all that help, but now it's just not a possibility at all. When I was first diagnosed, I read as much as I could about other people's experiences, tips for chemo, ideas for healthy lifestyle changes, etc. But most of that is thrown out the window now because of our current reality. If one more well-meaning friend suggests that I only eat organic, I will lose it. I can barely get groceries, much less be picky about brands, type, store or cost. Cancer during COVID-19 is frustrating, lonely, uncharted, and unknown.
But back to more positive things: And that's why I'm so glad to have all of you.
Note to J (ByHisGraceTwice): I read that you are starting your chemo tomorrow, so I want to wish you good luck and I hope it goes well! I'm thinking of you, and all of us. Most of us seem to be first-timers who don't know what to expect. I've also been reading the March chemo group to learn from their experiences and it kinda helps.
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J - good luck tomorrow! Anxious to hear how it goes. I'll be starting next week myself.
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I enjoyed reading the new posts - thought provoking and therefore helpful. Thank you. My best wishes to J, who will start chemo tomorrow! We will all be rooting for you I am certain!
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Hi everyone, I had my first round of TCH today so I’m kind of an April girl. I was diagnosed with stage 1, grade 3, Her 2 + IDC no lymph node involvement. Had a lumpectomy in Jan which was pretty easy! Port was only put in last week ( not as easy as lumpectomy). I kept getting pushed back due to some dental issues but hoping we are on track now.
I am 51 years old in central Alberta Canada. Been married for 30 yrs to my high school sweetheart! He has been wonderful and very patient through this gong show. 2 kids grown and gone and 1 dog grand baby.
I will be having 4 x rounds of TCH followed by radiation and Herceptin for the rest of the year. Our Cancer Center staff is amazing and is full of any info we may need. Although extremely overwhelming they have a way of putting you at ease, especially during this crazy time in the world!
Covid is here and we have been living in a bubble. Husband has been working from home and only going out for groceries when needed. It’s a scary time but just need to power through the best that we can, however we can! The thing that I have learned so far is everyone’s story is their own and own that story!
Wishing everyone good luck, good health and good outcomes!!
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Hi Dup403! Welcome to the group! Thanks for joining us and sharing your story so far. It's really good to hear that you have had good experiences so far, that the lumpectomy was actually pretty easy, and that you have a wonderful Cancer Center staff. Please let us know if there's another name you'd like us to call you.
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Hey everyone, I just got the call from my oncologist that I've been waiting for... I got accepted to a clinical trial called ISPY and was randomized to receive an experimental immune therapy in addition to the standard chemo treatments. I START ON THURSDAY omg!
I will have the common AC-T regimen, but will do Taxol first, weekly for 12 cycles, plus the immune therapy at the same time. Then 4 cycles of A & C, maybe every two weeks, not sure. So approx. 20 weeks of chemo, then surgery (mastectomy), then radiation. When I think about all of it, it feels overwhelming. But to finally be starting is exciting! I'm ready to be finally taking an active step, not just waiting and doing more exams.
Hang in there, everyone!
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One of the worst things about this Cvirus is tomorrow for my first ever infusion is I must be alone. Sadly, I think we all will be. Only the patient will be allowed in the oncology buildings and infusion clinics.
I am deathly allergic to proteins in two animals and the mineral iodine. Kinda like a peanut allergy, but to a protein in cow's milk and bay scallops (not sea scallops, just bay scallops.) I passed out and went into respiratory failure when given iodine in CT contrast for a kidney scan. Until then I didn't know I was allergic. Cow's milk protein and bay scallop's protein make my throat swell shut and my face and tongue look like a puffer fish. I've had to go to the ER a couple times when I ate something I didn't know had cow's milk or bay scallops in it. I now keep three Epi-pens with me at all times.
Herceptin is a monoclonal antibody made from a protein in Chinese hamster ovaries. (Seriously, whose idea was it to test Chinese hamster ovaries? Sure glad they did! It eats HER2 positive cancer cells!) Another lymphoma cancer fighting monoclonal antibody is Rituxin. It's made from a mouse protein. I was with a friend with no allergies when he had a horrific reaction to Rituxin. He was in the hospital for a week. I'm scared silly about having an allergic reaction tomorrow AND ending up in the hospital with all the Cvirus.
I keep telling myself what my MO and RO have told me — nobody reacts that way to Herceptin — it's not unusual for people to react to Rituxin — yes, your friend's extreme reaction is rare — we'll be watching you closely — no exceptions you cannot have anyone with you. I'll be so glad when this first infusion is over tomorrow and all I have to worry about is heaart failure from the Herceptin. (Sorry, y'all I do have a warped sense of humor.)
Dup403 — how are you doing tonight after your first THC today? Did you have to be alone?
Wahoomama87, BostonGal, jelloelloello — thank you for your kind words. My infusion should begin about 9:00 am CT tomorrow. If you could send a virtual hug about then,I'd really appreciate it.
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jelloelloello — that’s terrific news! So happy for you. April’s going to be a great month!
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ByHisGraceTwice thanks so much for the hug!! I was not alone, husband was with me, so far we are allowed 1 caregiver but with a strict screening before entering. I think of everyone doing this alone, especially the 1st one but know that with my experience the nurses were absolutely amazing and have a calm way of putting you at ease and reassuring every step of the way!
I am just exhausted tonight but could be from not much sleep thanks to the dexamethesone and the stress & anxiety of the day. They tell me days 3-5 can sometimes be the rough days but it’s my journey so who knows. I’m trying to remind myself to roll with with punches, take what comes the best I can and move on! May need to be reminded of this...
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@ByHisGraceTwice sending you hugs for tomorrow and will be thinking of you and everyone else. Power in numbers and support
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ByHisGraceTwice - all the best tomorrow. Sadly COVID-19 is making our treatments much more isolating. I also got notice from my hospital that I'm not allowed any visitors. Let us know how you do.
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Hi all. Add me to the list of those starting chemo in April. My first infusion should be the week of April 20, but I don't have a firm day yet. Waiting for the call. I will get 4 rounds of TC, 3 weeks apart. I keep thinking I can handle anything for 3 months, right? I mean, I was so sick when pregnant and I did that 5 times for 9 months each! So with a positive attitude, I move forward. (I'm talking brave, but inside I'm shaking like a leaf on a tree in a hurricane!)
I agree though, that the timing of this sucks big time with covid-19 being such a huge risk. We really are on our own in so many ways. And very vulnerable. So I'm thankful for this forum and thanks to jelloelloello for starting this group!
Oh, and I'm in central IL.
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pjb61,
Welcome! Yes we are all in that hurricane with you! The uncertainty of cancer, the uncertainty of the times, and darn it, why cannot we get the most common of items anymore are so stressful!
BostonGal
P.S.: Thinking of all today as we face this challenge and sending wishes for strength, hope, peace and even joy...
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Good luck to All! ! Indeed you all are going through ALOT at once! We're all here for you
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The plastic surgeon just gave the green light to my oncologist to clear me for chemo. So, I will have my first of four infusions of TC on Friday morning. Just heading out now to pick up the steroids and anti nausea meds.
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