Starting Chemo April 2020
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J, your faith is so inspiring! I’ve definitely felt my faith grow after my cancer diagnosis, and I’m so thankful for it!
Katie, I’m so sorry to hear about your toenail. I’ve been super conscientious about mine bc I heard that could be a SE of chemo. I’m also trying to keep my nails short and hands/feet moisturized to alleviate the chances of getting a nail caught on something. I hope your onc team can give you something to help.
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Everyone is looking good! Officially shaved the head over here in Chicago and feeling good. I’m glad to see we’re all taking this on our own speed and supporting whatever stage we’re at!
Hope everyone is enjoying their weekend. Here’s to week 7 (over halfway done now with Taxol).
Also, saw some posts on acne. Mine started coming in and I tried the overnight Clinique hydrating mask and it’s help a lot!
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Justyne, lovely picture! I am glad you are feeling well.
It is good to know about the Clinique product.
Allie
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Hey Justyne - You look so cute with your buzz cut
I don’t know about you, but I’m enjoying mine. It’s so EASY! Glad you’re feeling good! Nan
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The buzz cut is SO easy, Nan. It’s nice to just wake up and be ready for the most part to start the day.
Thanks for the support
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Justyne - you look great.
I'm with Nan...once the hair comes off, it's rather easy. In and out of the shower with no time needed for styling. If I want to look more like myself, I pop on a wig. It's not the same but will due in the meantime.
I had my 3rd chemo on Friday. Feeling a little achy and overall somewhat yucky but not too bad. I'm never sure if it's the Neulasta or if it's the Taxotere/Cytoxan. It's a rainy holiday Monday (Victoria Day in Canada) and I'll just relax and chill today. Hoping everyone has a great day!
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Sherri,
Good to hear from you. I wanted to comment on how you are feeling and i am glad it is not too bad it sounds..
I have now completed three sessions of AC and am now seeing my patterns and timelines as to my overall reaction to it. Only one more AC session to go and the onto Taxol and figuring out that!
Here's to a bounce back later in the week, if not sooner!
Blessings to all!
Allie
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Allie....I know everyone is different but I’m curious to hear what you are experiencing with AC. I’m doing AC-T but I’m doing the taxol portion first. I have #8 of the 12 weekly in Wednesday this week. I have done really well with taxol and know AC is a beast. I’m curious what you are experiencing.
Heather
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Heather,
Let me first reassure you. I know that Adriamycin has a "reputation," as the "Red Devil," and perhaps it is well deserved...however, what occurs to me is that I am having both Adriamycin and Cytoxan and I wonder sometimes if because everyone is concerned about the "Red Devil" (Adriamycin), people forget about the Cytoxan. Chemo ain't easy, no matter what the regimen is my feellng...However, the medical teams have gotten really, really good at preventing and managing side effects.
Here are the ones I've been bugged by...and again, they are certainly not due to just Adriamycin but also to Cytoxan and how I react to them:
Initial constipation and anal/hemmorhoid irritation: now MUCH better with MiraLax added into the usual mix of things to do about constipation.
For about two days after chemo session: fatigue, anxiety, insomnia, and my heart seems to be working a little harder than normal. This could be steroids and just the inevitable "wash out" that happens after chemo sessions. I deal by just being kind to myself, trying to focus on self care, and watching and reading anything that will lift me up. Drs. try to get me take Ativan and I resist (silly...) I have good backup in the medical team and they help immeasurably along with some good friends.
Dry, cracked hands! This could be over washing, not wearing gloves, and not moisturizing enough!
Some dry mouth and one sore spot (once): This too tends to crop up about a couple of days out I've noticed. I try to keep up the oral hygiene and I use various rinses, toothpastes, oral moisturizers as need. This has not been a significant problem for me, I just mention it because it happened.
Episode of urinary bleeding after second chemo session: was thought **could*** be a metabolite of Cytoxan irritating me perhaps but cystoscopy did not reveal any "damage" or serious issues. Doctors will be monitoring me for all this. There was no pain with this btw.
Urinary urgency and some leaks (really only bad after the first session): this has gotten much better too and actually it might be because I DRINK DRINK DRINK DRINK DRINK water! I have also cut down on caffeine. Again, I tend towards this even off chemo if I am not careful to keep my weight down, etc. I'm post menopausal.
Nose irritation: this is recent and started about one and one half weeks ago. Just a horrible dry, stuffed up nose that has bleed. Was very sore where the nostrils empty in the back of the throat one night. This is thought to be from drying from chemo, dry air, and maybe allergens. I am following the advice I was given to manage this and it is much better, but not gone. But I have not had that awful soreness again so far. I was reading just today, interestingly enough, that the hair in your nose can fall out too during chemo and this might contribute to nasal problems!
What I have not had and thank the Lord for: nausea, vomiting, lack of appetite, trouble dealing with loss of breast/hair, significant fatigue that impairs me from being at least lightly "active". Also, I have not had any pain from Neulasta that I can recognize. I did have a bruise or a little tiny phlebitis on an existing calf vein but there was no pain. DR. checked it. Could be that I backed up into something and bruised it.
The biggest thing to deal with for me is just the fear and anxiety of the unknown...My medical team has been great at helping me deal with this along with a few good friends, and this group of course~
Fondly,
Allie
PS. Again, unique to me probably, but I did have an uptick in heartburn right after first chemo session. This lead to mild queasiness (no vomiting) and I was put on Prilosec and this has not happened again.
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Allie...thank you! As I get closer to AC I’ve gotten a little anxious so this was helpful. I’ve done well with taxol and have been maintaining a pretty normal routine. I try to just enjoy each day and not worry about the next step but that is easier said than done😃. With taxol I’ve had the dry nose, bloody when I blow it and a bit of a sore throat some days which I assume is from posy nasal drip. It runs now non stop which might be from losing node hair...I should check. I think the possibility of nausea and vomiting most scares me...I hate either. My MO said stay on top of nausea meds and I should be fine. She said the fatigue is the worst for most people. With taxol I haven’t had fatigue that has affected me yet. I struggle with urinary urgency but like you I am drinking insane amounts of water.
The anxiety between diagnosis and the start of chemo was horrible for me. It got better once treatment started and even better since I am trying hard to focus on this moment and not what’s next. Of course I’d be lying if I said I don’t occasionally think about surgery and get terrified.
I’m happy to hear you are doing well with it overall and hope you continue to do well with taxol which I think is easier for most people overall. I hope to do as well as you are. Thank you so much for responding.
Heather
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Heather
I am glad you feel a little reassured about it. It's all difficult...and we really won't know how we will react and that adds a lot of anxiety, which of course doesn't help but...there it is. We will get through it. And the good medical practitioners will help us.
I like what I believe Sherri (sugar77?) said a while ago about welcoming the chemo into our bodies as a healing nectar. I have thought about that and try to think myself as a partner with it in working towards my healing from cancer.
Allie
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Allie and Heather - I'm on Taxotere and Carboplatin, but my side effects have been largely what Allie described. I'm grateful for no nausea and that my appetite remains (and my taste for food). And I have 3 weeks between treatments so I largely feel pretty normal by the end of Week 2 and all of Week 3, so I'm grateful for that. Headed into Round 3 this Friday.
Justyne - love the shaved head! Welcome to that club!
All - Round 3 for me this Friday - prayers appreciated!
Kris
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Kris, I will think of you and send best wishes for Friday.
Allie
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Argh! My head is soooo itchy! I ordered a lint roller from Amazon, and it’s a wonderful thing. But ... How long does this last, though? I feel like a bear - I want to go rub my head against a tree! Also, does anyone else have itchy hands? I’m wondering if it’s related to the itchy head?
Other than that, just starting week three, so I feel really good. Been doing a lot of walking - it helps! Appetite is too good - I think I gained three pounds last week from baking bread, cookies, pie, cornbread, you name it. I figure I’ll just live it up until next week when it’ll come back off again (hopefully!)
Thinking of everyone who’s headed in for chemo this week and sending hugs. And an extra hug for Sherri who had hers last week. Hope you feel better soon!
Xo,
Nan
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Nan -
My head has been itchy off and on - I think it's the shedding. When I shower, I do still use shampoo to wash what's left, and then I take some conditioner and really rub it ALL over my head and let it sit before I rinse it off. That has really helped. I'm finding that chemo just makes me dry everywhere. I'm using a ton of lotion on my body and on my hands multiple times a day. Someone recommended a hemp oil hand lotion and it's really been great.
Kris
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Tell me about hemp oil for moisturizing!
Allie
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Nan - my head and hands have been very itchy, plus my elbows. Cortisone has helped but my saving grace has been Aquaphor ointment. My oncologist recommended it and I put it on my elbow to start because it was so dry and uncomfortable from all the itching and it’s completely cleared up and much less irritating.I put it on every night.
Everyone - I see lots of people are doing the 12 weeks of taxol follows by AC. Curious if anyone’s blood test numbers are high in the liver (AGT)? I actually got a call before my chemo appointment yesterday and have to take a week off due to my elevated numbers.
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Wow! First walk outside in about two months...
I was told I could go outside and walk around my house as much as I like without a mask and so I did today.
I did about 10 rounds.
Now that I am inside, I am longing for a leafy, sunshinely, wooded trail where I can walk indefinitely and listen to birds sing.
I would bring a lunch and water with me -- maybe even a wonderful thermos of tea or coffee - and stop to eat on a hillside where I can see as far as I would like...
Allie
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Good Afternoon Ladies,
Have not posted in a while but get on daily to catch up with everyones journey. It's hard to call out by name to everyone but love the sisterhood that we are all going through this at the very same time in our lives. It truly is a godsend and I know we all feel this way.
I have had two treatments thus far of TCHP and going in for my third a week from tomorrow. This is my week that I feel the best. The first treatment I had the mouth and complexion issues but this past treatment I had virtually no side effects. The ice chips during treatment and daily oral care coupled with the meds prescribed for complexion helped tremendously. It truly is a learning curve. The Neulasta shot is the one that knocks me down for about 2 days with a tiny amount of bone pain and fatigue. I force myself to walk most days and that usually enables me to turn it around.
The problem I had this past week is my hair ... or lack there of. My scalp was very painful. I had buzzed it about three weeks ago but most of it was still hanging on. Mostly in the back. The past two days I have taken my finger tips in the shower with warm water cascading over my scalp and rubbed very intensely with my finger tips and have gotten all of the remainder of my buzzed cut hair to come out. I think it actually may be helping with the sensitivity today. I just hate the look of looking like I am sick
I really do not like the caps that hug my head ..... tried dressing them up with cute earrings and such. I am most comfortable in my baseball cap and athletic clothing walking my neighborhood. It's when I feel most normal. Yesterday I put my wig on because I just got in my head too much with this whole hair thing and the painful scalp. It honestly has been the worst part of Chemo for me. I know it will grow back and I will keep putting one foot in front of the other to get to the other side. But the depressing feeling of looking in the mirror and seeing someone different looking back at me is strange. And the thought of the double mastectomy after the Chemo is very overwhelming. Heather, I hear you. Having said all that, I do feel that losing my hair has been such a humbling experience. It makes me dig deeper to find the real me. I'm going to keep fighting this second time around with this 2nd diagnosis. It's strange, we are all doing things in different order, chemo, surgery, treatment plans ..... We woman, are Warriors. Might be down for a day or two, but we always seem to get back up. Here's to the ability to "Always being able to get back up" Thanks for always being there when I need you guys the most. Even when I'm too down or tired to put myself out there (and I know that applies to most of us) it's just such a gift to check in with everyone and know we are not alone in this journey. Here's to one day being able to check back in when this is a distant memory, right ?A few of us, Nan and Katie and I are FitBit Friends and are in weekly challenges. Katie took 1st place last week and Nan is taking the lead this week. It's fun !! Definitely makes you want to put your shoes on and rack up some more steps. If anyone else has a FitBit and wants to join us please let me know. The more, the merrier.
Debra xoxo
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Allie - you're not allowed outside?! My MO has pushed me to walk EVERY day. I do about 2 - 3 miles (except in the couple really bad fatigue days - and then I do 1 or 2 miles) and I walk all around our neighborhood, in the woods, etc. As long as I'm not getting up on top of anyone, it's fine. Also - being outside gives me some much needed Vitamin D - lots of articles out there about the importance of Vitamin D for breast cancer, but also for preventing/recovering from COVID. Just 20 or 30 mins a day!
For the hemp oil products - I'm ordering from a site called Hempz. A friend recommended them - I have several of their lip moisturizer - REALLY helps with the dry, chapped lips. I also have their hand cream and it's awesome. I have a hard time with the ointment products like Aquaphor. I just don't like the greasy feeling. For body cream, I order form a local Atlanta person who makes her own. It's all natural and very moisturizing. I can give you her contact info if you want - she will ship.
Debra - I'm about to do Round 3 on Friday of TCHP also. The dry mouth has been a real problem for me the first two times - just for a week or so and then it fades. I had already decided that I was going to try ice in my mouth and see if that makes a difference. Good to know that it's helped you. The couple of days of fatigue is really the only other bad one. I've gotten control of the digestive symptoms with some supplements from my naturopath and other than that, haven't had much. I agree that Week 3 is the best - I mostly feel pretty normal. The hair hasn't bothered me much. I put a cap on if I'm going out, mostly so other people don't have to "avoid" staring. But I've even stopped wearing them when I'm on video calls for work. Everyone knows I'm going through treatment and I don't care, so I just go natural. I still have a small amount of hair (even though I buzzed it). Some keeps coming out, but it's pretty evenly spaced throughout, so it just looks very sparse and thin at the moment. I don't like the feel of a wig either. Just yet another "cancer" thing you never think about until you're there.
Kris
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Kris,
I'm think I'm being told to avoid stores and other potentially crowded places, for the most part
Walking is fine as long as I'm either not around people or am wearing a mask if I come across them
I'm just plain scared at this point... But ya', after today's outing I just wanted to be out in the woods someplace...
I'll walk around my house in the meantime and if I can gather the courage, I might venture further afield...
This might have to do for me plus some indoor exercise and sitting on the porch soaking up a bit of sun!
But, there is nothing like being out doors, especially in lovely spring weather.
Allie
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Kris, I’ll be praying an easy round for you on Friday! My side effects seem similar to yours, with the exception of nausea, which I had for about 4-5 days after chemo.
Allie, I’ll be praying for you as you begin your new treatment.
The last 24 hours have been a little rough for me. Last night, I developed a fever that would not go away despite Tylenol. That sent me to the ER today for a round of tests. Even though I took a COVID test, my doctors believe that my fever is the result of my body fighting off the inflammation from my sentinel node biopsy. Therefore, I’m now on two different antibiotics and will have to postpone chemo for a week. (I was supposed to do Round #2 on Thursday.) Lord willing, these antibiotics will do the trick.
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Hello Everybody!
Today, I had my first combo infusion of Dexamethasone — Diphenhydramine — Famotidine — Trastuzumab (Herceptin) — Paclitaxel (Taxol.) So far, i haven't had a significant reaction.
My two prior infusions were:
April 1 — Trastuzumab - anns, a biosimilar to Herceptin. I was supposed to get Trastuzumab (Herceptin.) I discovered several days later, instead of Herceptin I was I infused with Kanjinti. Kanjinti is not a FDA approved interchangeable. I had bad reactions to Kanjiniti during and after the infusion. No medications other than Kanjinti were infused. To try to control my vomiting during infusion (with the chemo nurse's approval) I took a total 16 mg ODT Ondansetron which I brought with me. For about 12 hours after the infusion, I continued nausea and vomiting, had diarrhea, chills, and a sustained fever of 102.5°. My normal temperature is ~97.5°. When the MO's office opened the next morning, i called and left a message for my MO and his PA about the reactions I'd experienced. I never heard from either of them.
I fired my MO of three years for his failure to disclose and failure to obtain my consent and failure to follow standard of care. Immediately prior to the infusion we talked about my quirky allergies to animal proteins and specifically my concern about a mouse based monoclonal antibodies to which a friend had violently reacted.
My friend had accompanied me to the MO visit the time before. After his reaction to Rituxin he was hospitalized for a week. My MO never mentioned Kanjinti or any biosimilar to Herceptin.. When I was infused with Kanjinti I didn't know it existed; I didn't know there were mouse protein based biosimilars to Herceptin.
Some of my allergies are life threatening. I have severe allergies to animal proteins. If not premedicated with steroids, Benadryl, and Pepcid, I pass out and go into respiratory failure if administered the mineral iodine which is used in contrast media for CTs scans. I was worried about the Chinese hamster ovary protein from which Herceptin is made and the possibility of reacting if I was infused as my friend did to a mouse protein based. The MO did not disclose he intended to infuse me with Kanjinti which is made from a mouse protein.
May 7 — Transtuzumaub, the "real" Herceptin, administered under the supervision of my new MO. I had no reactions during infusion. No medications other than Herceptin were infused. About 10 minutes after infusion ended, I developed a slight stuffy nose. In the next several hours the stuffy turned into my nasal passages being blocked as solidly as a brick and a mild asthma wheeze. I did an albuterol nebulizer treatment and used saline mist spray in my nose.
Five days after the infusion I had some dental work done. I developed increasingly severe pain in my left lower rib cage area that night/next day. I thought it was a catch in my side from turning my torso in the dental chair. The pain grew increasingly severe and peaked over the weekend. Neither my PCP, my MO, or I believe the problem was related to the dental visit or a heart problem from the Herceptin infusion. My PCP is thinking I passed a kidney stone. OUCH and my sympathies to anyone who has passed a kidney stone.
May 19 — Trastuzumab, the "real" Herceptin in the combo stated above. I developed a slight headache a few minutes after the steroid infusion ended. During the Taxol infusion, I slept for about 20 minutes, deep sleep not a little cat nap. Last night I couldn't sleep trying to keep myself from worrying about today's infusion. An asthma wheeze started after I got home. It was stronger wheeze than after Herceptin alone. I used my albuterol rescue inhaler twice and did one nebulizer treatment. I continued to have a wheeze. I'll do another nebulizer treatment before I go to bed. FYI: at my MO's request, I iced my hands/feet during the Taxol infusion and 15 minutes before and after to prevent neuropathy.If I have any more side effects from today's infusion, I'll supplement this post.
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I'll cross post this in the thread Unreal Tarheel (from the May 2020 Chemo) started specific to Herceptin and it's biosimilars. The biosimilar her MO used on her is Ogivri . If you are HER2+, Please read thread
Topic: Please talk to me about Herceptin biosimilars
https://community.breastcancer.org/forum/80/topics/876380?page=1#idx_6
Please also read the biosimilar discussions in the May 2020 Chemo, Triple Positive, Bone Mets, and March 2020 Chemo threads.
In some of those thread, I engaged in discussion about biosimilars with two members who like me, have special knowledge about biosimilars. SpecialK has great depth and knowledge on this and other topics. Her discussion shows her to be knowledgeable and interested in helping others understand complex subjects.
Etnasgrl and I engaged in a spirited discussion in the March 2020 chemo group thread. I believe she is absolutely wrong when she states a biosimilar is the same as a generic. She quotes an information article written by BreastCancer.org to support her position Herceptin and it biosimilars are the same because both are made with living organisms.
That statement is at the core of why and how the real Herceptin and biosimilars never can be interchangeable. Herceptin is a monoclonal antibody. Mono meaning one animal. Clonal meaning the one animal is cloned to make the medicine.
Herceptin is made from cloning the protein of specific hamster(s). Kanjinti is made from cloning the protein of not just a different specific animal, it made from a different species — mice.
Etnasgrl disagreed with and rebuked most of what I said. Etnasgrl appears to have special knowledge and perspective on biosimilars. She has stated she works for an insurance company as an advocate.
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j
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J,
Bless you for being so smart and for being able to keep up with all of that information! And to be a good advocate for yourself, and to help others!
I feel like an earthworm in comparison, just ffuumbling through everything...with the good help of the medical people and all the inspiration here...we will get through.
Blessings and best wishes,
Allie
Kris - thank you and best to you. I hope you are feeling better now.
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Good morning ladies!
Does anyone have suggestions on how to deal with hot flashes and night sweats? It’s getting so bad that I am not sleeping at night. Almost hourly I wake up in a puddle of sweat. I think it’s caused by the hormone therapy thrusting me into menopause not the chemo, maybe a combo of the two.
I just want to get a good nights sleep!
Stay strong!
Lise
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Lise- Try black kohash. The spelling might be off. It's an over the counter supplement that works good for hot flashes!
J- Holy crap!! I'm so sorry you had such a bad start to your treatment!! Good for you for being very knowledgeable about your allergies and for changing your MO! You are in charge of your life!!
I hope everyone else has been having and continues to have a good week!! Keep up the fight to kick cancer's ass!!🥊🥊
~Katie💗
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Justyne....I'm doing taxol first and then AC. I had #8 this morning. So my blood draws have been Tuesdays and they do a CBC watching my white blood cells, red and ANC. A metabolic panel and watch my liver functioning. Taxol effects both. So my white blood cells and ANC dropped below normal after the first and second taxol. Not low enough to skip. My liver elevated after those first 2 or 3 right above normal but not high enough to skip. Since then everything has rebounded and stayed within normal limits. Obviously that can change any minute.
i asked the infusion nurse and she said the taxol effects those things and if the liver is too high then the liver is having trouble processing the chemo. She said it happens because the chemo is hard on the liver. Fingers crossed skipping a week brings them back up and you can get back on track. I understand being frustrated having to skip...let's face it we want this over ASAP😃.
I added a view from my Infusion chair. I’ll be sending you positive vibes for the liver enzymes to go up.
Thinking of all of you ladies❤️❤️
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LiseC -/ night sweats were my problem, never had hot flashes. I’d wake up drenched -/ changed clothes couple times every night. Much against my cynicism, when first diagnosed in 2016 I was made to stop taking my prescription Estriodol which I’d taken since my hysterectomy 10 years earlier. The hot flashes I’d have before were so bad, I would have continued but I couldn’t find a doc who would prescribe after they found out I had breast cancer. My first MO, a woman, said an antidepressant was found to help. I called BS, but was desperate so I tried.
Venlafaxine HCL 75 mg tablet twice a day is what I was prescribed. It worked for me like a miracleand only took a few days. I don’t remember the Brand name, google for more info.
Good luck!
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j
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Venlafaxine aka Effexor.
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Heather - WOW!! Your view kicks my view of downtown Atlanta to the curb!! So gorgeous. Glad you are looking at that while you are getting treatment. We used to come out there every year to ski when our kids were younger and we were homeschooling. I miss it.
Allie - definitely get outside as much as you can - even just around your house. You will feel so much better. Go to the woods if you feel comfortable - mostly people are being respectful of distance when I'm out walking, although I'm honestly not scared or worried. Once I have my midcycle labs and my WBC is good, I do venture out a little, with a mask. I'm careful, but I want to live life, too.
Round 3 for me tomorrow - and then I can say I'm halfway done with chemo. And that feels awesome.
Kris
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