Starting Chemo April 2024 Support Thread
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@melanieh77 So sorry you have to join our ‘club’! You look gorgeous with the new ‘do! I start TCHP tomorrow. 6 rounds every 3 weeks. My hair is already pretty short. Once it starts coming out in clumps, I’m taking the electric clippers to it.
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@kggenx Thank you. Your words are so sweet and appreciated. My hubby’s barber (with a #2 guard on the clipper) did mine and it was very emotional. My (19 year old) son, my sister, and my hubby held my hands and we all cried together. I think I’m still in disbelief about it.
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@melanieh77 My son turns 20 next Friday! He doesn't live with me though but with his father. I died my hair a purplish pink color in the meantime. Might as well have fun with it before it goes away.
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Aww love that outlook to have fun with it! I’m not there yet and feeling bummed with everything. But I hope I can switch my feelings soon. My son is 19 and is a freshman in college. He lives in the dorms. I miss him but I’m lucky to see him about once every week or so. ❤️🙏🏼
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I saw my son a few weeks ago when we met up for dinner so I could further explain my diagnosis & treatment plan with him. He lives about an hour away. So, not far
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Welcome @melanieh77 and @sonia007. Melanieh you are so beautiful!!! I just started TCHP today. I have cut my hair shorter but not shaved yet.
My first treatment went well with no reactions. Now I feel like I'm just waiting for all of the SE's to set in. I was given two different nausea meds first, Benedryl, the Perjeta and Herceptin was a shot in the thigh going into the muscle, then the T then C last. They sent me home with a Neulasta port that will give the meds 27 hours from treatment, then just peel it off and throw it away. Dreading the bone pain that comes with it, but will be glad to have the extra protection against infection. @sonia007 is that what your bone pain is coming from? I was told to take Claritin and tylenol for the bone pain.
Praying the best for all of you!!!
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thank you @grammie2 . 🥹
My front teeth feel sore/sensitive.. wondering if thats partially the bone pain side effects?
Besides that, I’m more tired than usual. And a few hours after treatment I get red/flushed and a low grade fever.1 -
@grammie2 Yes! So glad you mentioned Claritin. Many studies find this to be helpful to relieve bone pain!
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UGH!!!
so today at 4:15 PM EST, the cancer center calls me to say they still haven’t received pre-authorization approval from my insurance company to start chemo tomorrow but that their office girl will be working on it when she gets in at 7:30 AM tomorrow.
I’m supposed to be there at 8:15 AM. Well there was nobody at the cancer center to speak to because they close the office at 4 PM, so I called my insurance company. They told me that they haven’t even received any pre-authorization requests for my chemotherapy and that chemotherapy does indeed require pre-authorization approval. 😳
The cancer center told me to come in anyway for my bloodwork & appt with my MO.I’m so upset right now. And Angry & worried. Because I might not GET chemo tomorrow after all. 😭
This is why healthcare in the US stinks. 🤬 this is legitimately the third snafu that I’ve had to deal with since being diagnosed with breast cancer because people drop the ball.🤯🤯🤯1 -
@melanieh77 curious you mentioned the flushing. I noticed a bit ago my face felt hot and looked at my checks were a little flushed. No fever. I was searching all of the posts on TCHP and the ones I saw were blaming the steroids. I started the steroids yesterday. I was thinking its the chemo.
Thoughts anyone?
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Yes, happens every chemo day for me. Chemo around 9-11:30am … red face/flush and low grade fever by 4pm. Chemo nurse says allergic reaction. I now take extra steroids, antihistamine, and Tylenol for 24 hours after treatment.
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Oh good to know. My treatment was at 10 and I felt like my face was warm at 6. It almost seems to be getting better already. They are supposed to call me tomorrow and I will mention it to them. Thanks for the info!!
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@kggenx, we are so sorry to hear this. This is beyond frustrating! Both with your experience with your insurance and the lack of support from your treatment center. Have you spoken to an oncology social worker yet? Perhaps they could help you advocate going forward and moving the process forward.
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I honestly don’t think that it’s the cancer center who has dropped the ball here. I blame my insurance carrier. Because the day I got seen at the Cancer Center for the first time and the doctor ordered all of these pre-chemo testing I pretty much got automatic approval for them through my insurance.
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Mmmm… completely possible, @kggenx. We've had members share that their doctors had to do a certain amount of advocating in order to expedite insurance approving treatments… I did a quick search because it made me wonder if we quantified the overall hours across all cancer patients (early stage and otherwise) in the US that experience delays in treatments as a result of delays in insurance approving treatments, I wonder what the time would add up to. Unsurprisingly, a recently published article from December 2023 on the topic:
Interesting highlight from the article:
"To make matters worse, many cancer patients have had oncology care delayed because of prior authorization hurdles, with some facing delays of more than two weeks, according to research Chino and colleagues published in JAMA in October. Another recent study found that major insurers issued "unnecessary" initial denials in response to imaging requests, most often in endocrine and gastrointestinal cancer cases.
The federal government is weighing new rules designed to improve prior authorization for millions of people covered by Medicare, Medicaid, and federal marketplace plans. The reforms, if implemented, would shorten the period insurers are permitted to consider prior authorization requests and would also require companies to provide more information when they issue a denial."
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I would bet that they submitted pre-authorization for chemotherapy on April 5 which was when I saw my medical oncologist just like they had to submit pre-authorization request for the CT scan, the bone scan, and the echocardiogram, all of which were approved in a timely fashion, they had to submit request for my PowerPort insertion and that got approved almost immediately as well.
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No chemo today. 😢
The cancer center was told the same thing my insurance told me. That they never received the pre-auth request. Cancer center says they’re lying because they got a reply back from my insurance company thanking them for the inquiry.
So, they called the nurse who approves pre-auths & did one over the phone this AM. When I got there, the office staff was still waiting to hear back from the nurse at my insurance Co, they kept getting a voicemail. I spoke to the pre-auth person at the cancer center, she said she was gonna keep fighting & fighting as it’s a no-brainer that I should be approved for chemo ASAP!🤬🤬🤬
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@kggenx So sorry and I know this is frustrating!!! Hope they get it squared away quickly!!! And yeah, you would think that chemo should have been expected with all of the other pre-auths!!!
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@melanieh77 I talked to my nurse this morning. She did tell me mine is from the steroids. I'm really curious about this now as yours says it's an allergic reaction to the chemo. Maybe since I don't have a fever?? And if yours could be from steroids, you are getting extra steroids. And if mine is actually an allergic reaction from the chemo…. LOL. I just thought I would mention this and we can kinda talk as we go through it. My next treatment is in 3 weeks. If I remember, yours is weekly??
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@grammie2 So interesting as I too thought it could be from steroid… so then why more steroid? Lol! Who knows… yes I’m once a week. And so far every week seems a little different. This coming Tuesday will be #4 of 12 so we shall see.
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Hi all! Come join us today at 1pm ET to support one another through treatment via our Treatment Zoom Meetup! See you soon! Register here.
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Good afternoon. I’d like to introduce myself. My name is Rita and I’m 53 yo. I have Stage 3b, Grade 3, invasive ductal carcinoma. I had a double mastectomy on Feb 27th with 6 sentinel nodes taken out and 2 tested positive. Ocotype score of 38. I had a PET scan done and more cancer was found in 2 lymph nodes along the right brachiotocephalic/subclavian and a supraclavicular lymph node. I am here to find my chemo tribe. I started my first round of chemo on 4/18 and doing DDAC-T. The first 4 rounds are Adriamcycin & Cyclophoshamide given every 14 days followed up by 12 rounds of Paxlitaxol weekly. I got through my first round mostly unscathed, as I’d like to say. I had wasabi nose during the Cyclophoshamide treatment but was managed with Sudafed. I had a headache and a bit of nausea day 2-5. I’m getting a bit nervous knowing the next few rounds will be tougher. I am hoping we can all support each other and get us through this chemo.
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Morning! Newbie here. I'm Sarah, I'm just recovering from a right-side mastectomy (after a failed lumpectomy); sorry, I don't know all the lingo! I'm starting chemo in the next 2 weeks. I don't have a date yet. All the waiting is the hardest part for me. I'm having 6 rounds of TC. Any advice about cold caps? My oncologist is pushing it but it feels like it'll add so much complexity to the treatment.
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Hi @sarahjunefox and @ritafulmer14, We're here all to support you!
And just to remind you, there are a number of different groups and times, so if you're interested, please check them out here: Virtual Community Meetups. *2 are for going through treatment. One meets Tuesday at 1pmET, the other Thursday at 6pm, ET.Cold capping is indeed a commitment @sarahjunefox but many find it works well for them. It's such a personal decision on how important it is to keep your hair.
Hang in there, you've got it, and we're here any time!
Your Mods1 -
@sarahjunefox I am doing four rounds of TC and decided to cold cap using the Dignicap machine. Happy to share my experience after one treatment with you if helpful. It is not easy but I hope it will be worth it both short- and long-term. As the moderators said, it is deeply personal. For me, the idea of losing my hair (including the risk that some hair loss could be permanent with taxotere) was much more upsdetting than losing my breasts. I'm comfortable with being flat now (double mastectomy with aesthetic flat closure) but I really want to keep my hair!!
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Welcome new pink sisters!
Well, finally after a nearly 2 week delay due to waiting on insurance approval, I FINALLY start chemo tomorrow!1 -
I just joined here today, been reading for a bit but this is my first comment!! Reading your words I felt this is the perfect space to join in! Love all you said! I want to say I can relate! Little bit of a long story but... The day of my diagnostic mammogram and ultrasound, they literally squeezed me in same day to have a triple (and pretty invasive) biopsy done. Just by reading the room, and how quick the Drs were, etc I just knew. I knew it in my core. Besides being able to feel a decent size lump myself and this appt, things aren't good. The next day, and obviously I didn't have answers yet, but when I took my wrap off and seen how bruised I was and feeling the grossest about myself I've ever felt in my life, I lost it! I broke down so hard and I am pretty good about controlling my emotions but not this time. After I gathered myself, I prayed and begged "please God, I will go forward from this moment on and do anything and everything you have planned for me. I will face this crappy situation with strength and hope knowing you're with me every step of the way, I'll do whatever I have to, whatever you ask, the only thing I beg of you is please please don't take me yet" from the beginning of all this, each situation to this point came back worst case scenario. I was so scared!! Well a few days later I met my oncologist for our first of many meetings, to talk about everything that's been happening and what's to come. When I left that consult I felt so much undeniable relief, peace and hope because I knew God sent Dr Winkler to sit with me that day and tell me "everything's gonna be ok, I heard your prayer and you are going to be ok" isn't it amazing what can come from putting it into God's hands! Thank you grammie2 for letting me share my story with you!
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Thanks so much! I'd love to hear about your experience. I was the same with my mastectomy, happy to see it go, no worries there. That felt easy. Chemo feels hard to me. I think it's the reputation that Chemo has and the way it is portrayed in movies & TV. I want to make it as easy as possible!
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Good morning, everyone! ☀️ I know this is an April thread and it’s now May, but I’m hoping some of you can offer some tips & tricks.
I’m getting a port placed on Friday. Any lessons learned or special items that help make your life easier? I’m getting ready to dig through my wardrobe in hopes that I have a few comfy button down shirts and soft, stretchy tanks because I see those port shirts online, but I am not feeling them. I did purchase a seat belt pillow.
Thanks ❤️
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