Starting chemo February 2018
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Cbok that puppy is the cutest! I’m sure he will bring much joy and laughter into your house. I’m loving all the dog photos. Instead of guarding my port from my kids I have to make sure my dog doesn’t catch it with a paw every time he attempts to get on my lap!
Ladies I’ve had a day of ups and downs, starting this morning with a big shed in the shower. I’m cold capping, so even though I knew I would lose hair, I didn’t prepare myself for it emotionally. But things got better, I saw my onc today he was very encouraging about everything, and he didn’t think the hair loss was bad (although it’s still early days). I also learned my white blood cell counts are at a normal rate- so I get to leave the house and mingle with the public! The very first place I went was Sally’s for some hair supplies.
Here’s a pic of my pooch:
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Hi all,
Thank you very much for your support and response regarding the chemo meds. It is quite frightening to limit some of them because of heart damage.
Finish ny second round a couple of hours ago. So far so good. I looked at all your dogs and I am glad you find some pleasure with them. I am more a human people. My fake husband has wanted a dog for as long as we've been married and I always said no. I didn't want kids either but gave him his son for his birthday and now I love my kids so much I cannot imagine a life without them! The issue with having a dog is that I will be the one who will have to take care of it because I am the one at home all day long. I am not ready to do that!
Have a great weekend with few or no SE.
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I love all the dog pictures! I don’t have one myself but these pictures made me smile!
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Lolotte, so sorry to read what you’ve been going through with your husband. This is a hard enough time. I hate you have to deal with that on top of it Sending you love.
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CBOK what a cutie, Pomeranian? Here's my 2 both rescues. I'm working tomorrow so off to bed, will check back in. Have a good weekend all.
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No dogs here yet, I need potty training completed before I am willing to scoop up after a dog. But here is Pixie, proving that she will actually sleep in that silly bed. Husband was skeptical lol.
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can someone tell me if I am scheduled to have 4 rounds of Taxotere, I have already had one, why are they insisting I have a port installed? They never have any trouble finding a vein and I don’t want a port. Why is this mandatory for me?
Thanks,
Tracy
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Thanks for the dog posts everyone. I just love seeing the pictures. The kitty is super cute too. We sure do love our pets don't we!
Just had my 3rd and I'm still a bit high on the steroids. Last night I only slept one hour, from 730 am to 8:30. Got up and took my second round of steroids at breakfast and continued on my day. Took my evening steroids at 5, so hope that wasn't too late.
If anyone is interested, when I thought last round I was tanking from low hemoglobin, I got myself tested and I was wrong, my hemoglobin is improving. Oncologist asked me if I had a cold and I did, a small one that seemed to me to be inconsequential. But he told me even the smallest cold can just zap the energy while we are so depleted. Makes sense. Hope you all are doing well and SE are manageable.
Laurie inthehood
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Howdy,
The dog pics are fun.
Lolotte, the heck with fake hubby. You will be better off without him but I know it hurts now.
A friend gave me a big bag of chemo comforts before my first round. It felt so good to have something that was mine to walk in with. My first chemo went well yesterday. No pain, drama or surprises. I was so freaked the day before. Glad to have read you ladies talking about Ativan, so I said yes to that. Mellowed me right out. Today I was just tired and foggy brained. Chemo brain is real! The nurse said that the fog will lift and then I will be very forgetful-great trade-off! Trying to stay in the moment and not worry about what tomorrow may bring.
Thanks for heads up about ports and loved ones- no pun intended. My sons are adults but one still lays his head there occasionally when we sit next to each otherso good to know when I get mine next week. So much for off the shoulder summer blouses. I really don't want a port but one arm for a year of puncturing is quite limiting. Must be so hard for those of you with young children.
I bought an inexpensive wig and I'm getting my hair cut this week to reduce the trauma of finding clumps everywhere. My new hat and scarf collection makes me happy.
Wishing you all peace and comfort.
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Hi Tracy
I don't know why your team insisted a port but I don't think you really need that. 3infusions to go, you definitely have more than that number of assessible peripheral veins to complete.
Hariry
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Tracy, I don’t understand either. My MO said I shouldn’t need one for 4 rounds and she even had the nurse look at my veins at my pre-chemo appt. The nurse said my veins looked good and if there was an issue at the first round, they could always put a port in later but they thought they’d be fine without it. Hopefully you can get what you want! That’s frustrating!
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Oh and my MO said the nurses may want a port because it’s easier for them but she said that doesn’t mean I need it. The nurses said they’d be fine but I wonder if that’s why they want it for you.
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Tracy I’m also on taxotere as part of my treatment, but I get 6 rounds. The only helpful thing I can offer is my onc said I needed a port because the chemo will be really hard on the smaller veins going in (the port delivers the meds directly to a large vein). I’m also having six rounds of a combo of 2 chemo drugs, and two targeted therapies, so there are more drugs going in for a longer time- I will continue one of the targeting therapies for a year, so a port made sense for me. In your case it seems like some do, some don’t. I think if you feel strongly about it you should keep pushing. Thisis your body and your treatment so make sure you get what you want, or completely understand why it’s not possible. Keep asking and I hope you you get your answers!
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Ladies, did anyone experience eyebrow or lashes thinning? I'm post 3 rounds of AC. Or am I imagining it?
Here's my pooch:
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Hairir, LoveCanada, 22fightfor,
My MO is very young and a very nice guy. Unfortunately his team of nurses are overbearing , threatening and throw temper tantrums when I ask questions. It’s their way or the high way when I ask questions. I’m sitting here with a knot in my stomach right now. I’ve been so nervous when I should be settling down for my treatment on Wednesday. I just want to give up. I tell them this too and they just add more pressure. I can’t take it anymore.
I have a port appointment that I need to cancel for Tuesday and this is not going to go well.
Tracy
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I definitely wanted a port. Adriamycin is a very bad vesicant and taxanes are too to a lesser degree. I had a cousin go through chemo 20 years ago without one and her veins are so shot that when she has to get blood draws or iv now they have to do it in her leg. Regardless of the extravasation concerns, I just freaking hate needles and ivs. They freak me right out. So the port is awesome for me. But I've seen lots of stories about people having issues with them (AMBurt for example) so I think it's a matter of personal preference and medical history. For only 3 rounds left after having had no issues seems weird though. I'm sure it's easier on the nurses but that should not be the deciding factor. Those of us on the AC+Tx12 are looking at a minimum of 16 blood draws and 16 infusions and that's a lot of ivs for needlephobes. (I know it's still a needle to the port but I have a hang-up about arm sticks)
Yay dog pictures! And cats! Deb-yes he's a pom. That's what my childhood dogs were and we wanted someone small so we could easily take him with us when we travel.
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Ports (like bmx's) seem to be a regional thing. I don't have one & most people here don't even though we're on AC + T
Tracy - is there a patient ombudsman or advocate at your facility who could help you?For any procedure your medical provider must get your informed consent so you need to be given a clear explanation (preferably written) of why they say you need this procedure and what the benefits and risks are.
You cannot give consent if it hasn't been explained to you why they want it. Remember to breathe and just keep repeating some key phrases: "I do not understand the reason I need this. Please explain it. What has changed that I need this now? What are the risks? What are the benefits? Why is this being recommended? Can I refuse?"
Best wishes with sorting this out.0 -
I’m sorry to hear that Tracy. You definitely shouldn’t have to worry about the nurses being threatening and overbearing while you’re going through this. I hope it gets better for you.
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Tracy I'm sorry you are having this problem with your medical team. I wish they were treating you with much more care- for not only your physical health but also your emotional health. I'm sending some strength and love to you.
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HI TRACY, I'm hearing you say your oncologist is empathetic and nice, maybe tell him about his nurses and the less than kind experiences you are having with them. They are a team with the Oncologist at the lead, he or she may have better luck talking with his/her team. I for one am having the same treatment as you, 4 rounds of TC and no one even suggested a port. The needles aren't so bad but I do get them on the upper arm and not on my hand as the hand bruised a lot after the first one. Just because I use it more and it gets banged around with the dog leash. Good luck. You deserve better.
Laurie indahood
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i think I also drive the chemo nurses crazy! I chose to have a Groshong catheter outside of my body because i am also needlephobe. The port would have been too much for me. The issue with this kind of catheter is that the skin where it gets out of the body needs to be cleaned every week amd it stings. So last time I told them that I was ready to sign a discharge because I didn't want them to use the stingy product. Thrn I asked her to not put her shitty tape on my royls royce dressing because it is pulling my skin. The nurse wasn't please, she was very unfriendly after that. But I don't care because I am the one who has to suffer a week before the next change.
Tracy, if you don't want a port, it should be your choice. They cannot refuse treatment because of that. Good luck sticking with what you feel is right.
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I didn't want a port or picc either but was told I had to have one or the other to protect my veins. I had the picc done because it was less invasive. It hasn't given me any trouble so far.
My chemo is dose dense.. 8 rounds act..every 2 weeks.
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I believeIt depends on how many sessions and the kind of chemo. If you have only 4 sessions of TC you can do a peripheral line. adriamycin is hard in the veins so I think that’s why you need a pic or port.
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Hi Guys
You are all sweethearts. I appreciate the support you give it's certainly more than the Onco team offers..
I can't tell the MO about the nurses as they involve themselves in every appointment. Their behavior is unprofessional and something I do my best to ignore. I have to be careful since they will be in charge of my infusion three more times.
I emailed my MO asking to know why it is necessary. He will probably call Monday.
I had reconstruction and I don't want anything else inserted in my chest. I don't want the infection risk. I had an infection after surgery which I feel came from the hospital.I don't want chemo going directly into my heart. Things go wrong at this place quite a bit (my surgery was long due to equipment failure which led to an infection and poor job suturing, my sutures opened delaying chemo, my initial chemo was halted due to a blood pressure spike, I was in a lot of pain from neulesta because they forgot to tell me about Claritin)and I don't want to deal with a another enexpected situation. Those are my reasons.
I'm sure they sound silly and paranoid but, I and my family have had to live through too many medical errors over the course of my lifetime. I'm not trying to be critical. Ingeneral I stay clear of “elective" procedures when I can.
ok nuff about my troubles back to doggie time.
Tracy
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Wow. This 2nd round of AC has done me in on days 3, 4 and 5 so far...what have you all been given to control nausea? Finding the Metonia doesn't do much for me. Feel like I have the flu minus the fever.
On the hair front, I've probably lost about 90% of it....hubby brushed it all out so at least I'm not coated in loose hair all the time. I feel like the hair loss has aged me 15 years...☹️
Hope everyone else's weekend is going way better than mine.
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Mom of two - sorry to hear you're experiencing nausea.
I get dexamethasone, Zofran & Emend for day of chemo & the next 2 days.
After that it's the same as you - the metoclopramide as needed. I can also add otc gravol on top of that if needed. Perhaps call your oncology nurses & see if you can add gravol. It makes me sleepy so it might knock you out but if you're tired and achy, that might be a good thing anyway.
I'm finding that the 3 meds given on days 1-3 take care of everything for me. I have not needed to use the metoclopramide at all this round.
Is your fluid intake ok still? Keep drinking as much as you can (or have popsicles or soup) and I hope you feel better soon!gentle hugs
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Hi Ladies, I find myself in the hospital as I type this. I woke up in the middle of the night with symptoms of a UTI. I didn’t sleep much, and called the on-call onc this morning. Since I also had a fever of 100.4 he had me go to the ER for a culture. It’s positive so I am receiving a bag of antibiotics as I type. The good thing is I haven’t been admitted yet so maybe I can still go home today 🙏🏻
Some things I learned:
1. I know there has been much talk about ports. Ladies, if you have one do yourself a favor and insist that someone from IV therapy come in to access it. I learned at my hospital that there is typically only one IV therapist in the building at a time, but the ER gets priority over other areas of the hospital. After one failed attempt at accessing my port today the therapist came in and got it done quickly. I originally asked for IV therapy, but didn’t follow up and ask the nurse who came in if she was the therapist. Now I know better. It’s also important to keep the card that came with the port on your person at all times so everyone knows which kind of port they are dealing with. I took a pic of my card so I can just whip out my phone and show the IV therapist which port I have. This is important so they know the flushing protocol- which solution and how many cc’s.
2. Even when your counts are up and you feel good please continue to drink all your water! I was feeling good and did not recognize the importance of this, and I fear this may have contributed to the situation I find myself in today.
Have a great Sunday everyone, and keep me in your thoughts-I also had an MRI to check my kidneys so let’s hope that comes out ok and I can go home later!
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22fightfor - oh poor you! UTIs are awful at the best of times and now it's the last thing you need. Hope your abx kick in quickly and they let you go home to continue recovering!
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22fightfor, so sorry! Hope your MRI results are good and you can go home soon! Mom of two, I’m sorry you are feeling so bad and hope you’re feeling better soon also! Positive, healing thoughts for all of you ladies.
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Sunday greetings everybody,
22fight-hope you are out of ER soon.....
Mom of 2 - my hair is coming out by the handfuls. Weird I’m not bothered by it. I guess as usual my anticipation of the event was worse than when it actually happens. I didn’t realize it would happen with the first round. And yeah at least 15 years older in the mirror 😮. It’s rough on my kids
Sending best wishes to all for a healthy week and minimal side effects for us all.
I have treatment Wednesday.
Tracy
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