March 2020 Chemo
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Hi ladies!
I had very red, hot cheeks the morning after the infusion. It didn't hurt or bother me in any way and now, it is pretty much gone. I did some research and it can be a side effect of the Taxol.
I'm feeling okay. Not 100%, but not terrible either. Somewhere in between, I guess, lol. I have a dull headache and woke up this morning with achy and sore legs. Other than that, the only thing is extreme tiredness. I went to bed last night at 7:30pm again, (2 nights in a row!), and sleep fairly well. Woke up several times, tossed and turned, but overall I did get some decent rest. I got out of bed at 6am and was napping on the couch by 10am. Good grief!!
And yes, it looks like this Coronavirus will be here with us for quite a while. It's scary, especially now with being in chemo, but not much we can do except be EXTRA cautious and stay home as much as possible.
My son, (15), is home with school being out, so I don't have to worry about him bringing home germs. My husband, on the other hand, is a police officer, so he's out in the thick of it. I worry about him so much! He is being as careful as possible, but whenever you are in the public, it's risky. Just praying that God keeps us safe.
Tomorrow, I am getting my hair shaved. Not really sure how I feel about that. One minute, I'm fine, just wanting to get it over with. The next minute, I'm so sad about losing my hair. Oh well.....I guess it's just part of the journey, right?0 -
hi everybody
I’m starting infusion in April, but may I ask a question please? Are any of your infusion clinics taking any special precautions for Coronavirus other than taking temp, asking if gone out of country, been around anyone sick?
I’m thinking the patients should be put in separate rooms not put in the one big room normally used. Anyone’s oncologist doing that?
Thanks
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Hi ByHisGraceTwice!
My infusion center is in the hospital, so in order to get in, we have to do the standard precaution.....temp and asking the routine Coronavirus questions. As for the infusion center itself, mine does not have one big room. There are individual treatment rooms. Each room has a door for privacy, the chemo chair, a loveseat, TV, and phone charging table with a lamp on it. It's very private....which right now, is perfect!0 -
Yes, Etnasgrl, I certainly understand about your hair. Sounds so foreign. I mean, we have always had hair, right? I was even born with a head full. So unnatural. Oh well, this too shall pass. I have purchased a wig and a hat that looks like a stocking cap and a scarf. The seem a little tight and I look like Albert Einstein in the wig but maybe when I have no hair, things will be more manageable. Daughter is hairstylist so maybe she can work her magic...I can only hope.
At my infusion center, the temps are taken before you enter the building. Then the usual questions. It is one big area. If you wish to watch TV, that area is just a row of lounge chairs which are not close together. I told them I needed something private. It is surrounded on three sides by a half wall. These stations, if you will, are a good distance apart. Because we are all cancer patients, everything is disinfected at the end of the day and throughout the day as patients come and go.
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etnasgrl — that’s fantastic! The only ones I’ve been in with family and friends are one giant room with recliners side by side. Wish all were like yours.
Sharlyn25 - since we’re all cancer patients we’re high risk. My concern is how many might be Cvirus positive and not know yet but are contagious. If we arephysically in separate rooms like etnasgrl’s facility the possibility of infection is reduced. Also, the dignity and privacy of etnasgrl’s center is wonderful.
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etnasgrl — just read tomorrow is the day you’re doing your hair. Hugs to you from Big D. You know everything is bigger and better so you know how Big Tex big those hugs are.
j
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ByHisGraceTwice, one more thing, family and friends are not allowed in our infusion center. Just the patient. Even the nurses, etc. could have the virus and not yet know it as their temps. are taken before they go to work, but they aren't tested for the virus. This center came highly recommended by my surgeon who is very respected. She has no problem telling it like it is. She highly recommended my oncologist and the infusion center. I pray for all of the caregivers and cancer patients having to go through treatment during this unprecedented time.
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Well, I did it. My hair is gone. It's horrible....but it was on MY terms, which makes me feel better. Cancer has stolen ENOUGH from me, I will NOT let it steal my hair, clump by clump. It's now about 2 inches long, so a short pixie type cut. I think it looks awful and will not allow anyone to see it, not even my husband, lol!
But....I did buy a hair halo from headcovers. com and tried it on over a cute beanie. OMG! I love, love, love it!! I love it so much that I went back to the website and bought another one to have as a back up.
First off, their beanies are really soft and flattering, but when you put the hair halo on underneath, it really does look like you have hair. I am impressed! And because it's just the halo and not a full wig, it is not hot or uncomfortable at all, which is great because summer time in Houston is HOT. I think this will be my daily go-to, even for around the house, because it makes me feel more like "me" and not so much like a cancer patient.
Hope y'all are having a nice, peaceful weekend. How is everyone feeling?0 -
hey everyone I too cut my hair off today. I’ve been very unemotional about it and about most things. Not sure what that’s about. It’s cool we’ve done it the same day etnasgrl I haven’t decided on a wig I’ll need to check out the halo option. This pandemic thing is just surreal to me. Especially doing it with being on chemo. I have had some very honest conversations with myself on the what if’s and I’ve come to the conclusion that I’m at peace with whatever happens. I’m so very blessed in life with all my family and friends. Grateful for this group as well.
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etnasgrl and Cassandra -/ big hugs wrapped around both of you
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Cassandra.....So honored to share the hair cutting day with you! I woke up this morning and looked in the mirror......WHOA....who was that old lady staring back at me?? Having my hair cut short makes me look like my grandma, lol! Since I was cutting it off, I didn't color my hair and it needed it BADLY. I had about an inch of regrowth and it was all gray. Now, since I only have about 2 inches of hair, it's mostly all gray. Not a pretty look.
Anyway, now I am sitting here in my beanie and hair halo, feeling a little bit more like "me". Not much I can do but roll with it.
How is everyone doing and feeling today?0 -
morning everyone,
hey etnasgrl it is a little shocking looking on the mirror. I actually colored my roots before treatment as I was going to try to save my hair! But I’m working on getting acquainted with my new self!! Lol seriously this pandemic has got me unnerved. As more time goes on and the stress on our health system I worry if other things happen to us will we be taken care of best practice wise or will it have an effect. Part of me gets nervous then the bigger part has peace with it. I’ve lived a pretty good life with many ups and downs and my faith in the afterlife is what calms me. Honestly I’m still in a little shock that at age 44 this is my life! Before this diagnosis I actually had felt better than I had my entire life! So I guess that’s a blessing. I’m sending so much love to you all! If your able I’d love to hear from you all to know your ok. ❤️0 -
Morning All
I may follow Cassandra and Etnasgrl and get my hair super trimmed tomorrow but will see... my hair is starting to makes its exit boohoohoo
I saw my oncologist today and due to my chemo rash, hes given me a prescription to help and will be skipping the perjeta on my next round to see if that's the culprit. not sure how i feel about that, but will see how it goes. next appointment is 3/30 for round 2, i went for a monday so i can take the week off due to the bone pain
There is a trader joes opposite my oncologists office, so i sent my daughter over there to do a little shopping, and she took longer than me as they were only letting a few people into the store at a time, which is a good thing, she is being awesome at wearing her mask and wiping down stuff/her with lysol wipes, so am pleased about that.
it was nice to actually get out of the house for a while too
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I give you ladies so much credit for cutting you hair! I know I am going to have a hard time when I see it start to come out in clumps. I want to cry just thinking about it.
I am getting my second round of taxol and herceptin tomorrow. It was suppose to be on Thursday but they got me in tomorrow. I’m happy to get it over with a day early. My husband and kids will drop me off and pick me up 🙁 I’m scared to be by myself. And my port is still sore, it’s been a week today
Anybody doing things prophylactic to help? I feel like I’m doing so many things just in the hopes it helps. I take vitamin b6 and 12, using a nasal mist to prevent bloody noses, castor oil on my eyebrows to prevent loss, icing hands and feet during treatment. I bought tea tree oil for my nails. All of these things could be a waste of time but I’m hoping something works.
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I cut my hair super short as well on the recommendation of my MO. I don’t recognize myself in the mirror!
Nooch, do you put the tea tree oil directly on your nails like nail polish? Cuticles too? I hope all goes well for you tomorrow. I, too, am apprehensive about doing my next treatment alone. We will be there in spirit with you!
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Hi chemo friends,
I've been meaning to join the group and post but have been feeling too crummy. I had my port put in on 3/12 and had my first round of chemo (Taxotere & Cytoxan) on 3/18. I had a bad reaction to the Taxotere and it felt like an elephant was sitting on my chest and windpipe. The nurses stopped the infusion immediately and that awful feeling went away. Whew! They gave me more pre-meds (Benadryl, fluids, steroids) and tried it again at a much slower pace. No problems! Just a little nausea and a bright red face the next day. By day 3, I felt like I had been hit by a bus. Took Claritin and ibuprofen and Tylenol and basically slept for a few days.
It's so reassuring to talk to someone who is going through the same thing you are. Hope everyone is doing well!
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Welcome Kikind! We are glad you have joined the group. Lot’s of great information and support are available in the group.
I had an allergic reaction to Taxotere too and they did a similar process with me. I am glad they were able to compete your treatment. I am also taking Taxotere and Cytoxan and am basically one week ahead of you in treatment. I feel good this week and am trying to get as much done as possible to prepare for the next treatment, I was pretty puny for over a week after my first treatment. This week I have felt almost normal for the first time since my BMX in January.
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Jks_Indy So glad to hear that you're feeling better. That first week is a doozy, huh? How is your hair doing? My MO said it would probably start falling out after around 2 weeks. I have long hair so I was going to get it cut super short. My husband had a bit of a hissy fit about me going out in public and possibly getting sick. So I said, "Well, then I guess you are going to cut it for me". So that's the plan this weekend.
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Hi all
Nooch. I have second round of paciltaxel tomoorow too. My port is two weeks old tomorrow and is finally not quite as sore. I have got some cream to put on an hour before to numb it. I was surprised at how uncomfortable it has been. Mine sticks right out of my chest under my clavicle on the right. Glad it wasn’t placed in my arm. It would be even more annoying. My first infusion that had herceptin and perjeta with it took best part of 6 hours. Tomorrow will be quicker.
Good for tomorrow and good luck to all. Stay safe.
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Hello Ladies!
2 down and 10 to go! Today went well. They sent me for an ultrasound of my arm bc of my complaints with my port. Thank God there was no clot. The pain goes down into my armpit. So they didn’t use it again today, they will give it another week to heal.
How did you do today helenlouise ?
Jks Indy- I have read that some people just put the tea tree oil right on their nails and cuticles. I read some people also use a carrier oil like coconut oil and mix it. My NP told me that epsom salt help also.Good luck to everybody this week! Thank u for being their in spirit today
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Helenlouise - hope all goes well with your treatment. We will be thinking of you! Nooch40 - happy that your day went well and there isn’t a clot. That must be a huge relief.
I will try the tea tree oil on my nails. They are fine now but since my hair starting falling out last night, I fear nails will be next. Hair seems to be everywhere so I put ona head cover. I will have more fluid withdrawn from my surgical site tomorrow. Always fun 😬
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Chemo this morning and at 2am, I woke up, wide awake. Ugh! Guess I'll take a nap when they start the Benadryl pre-meds, lol! Thankfully, I am off today, so can come home and take a nice nap. (I hope!)
I spoke with the oncology nurse yesterday and she was telling me that cancer patients in active chemo are in the high risk group for COVID-19, which of course, I knew. She said that I should quarantine for the 12 weeks of my treatment and so should EVERYONE in my home. No going out, ANYWHERE and all groceries or other needed items should be delivered to the house and left outside for us to come and get. That's fine for me and my son, (who is 15 and doing school online right now), but my husband is a police officer and can NOT stay home, he HAS to work, and my step-daughter also has to work at Starbucks. The nurse told me that I should try to find some other place to stay where those around me can stay at home for 12 weeks.
My dad, who is 75, (also in the high risk group because of his age and some health issues), lives alone and has plenty of room for me to stay with him. I am going to speak with my oncologist today, at my infusion, to see what she says.....but I may have to move in with my dad for the next 3 months.
I will obviously do what I need to do to stay as healthy as possible.....but 3 months away from my family? Oh, how that breaks my heart.....especially since this is a time when I would need them and their support the most!
Cancer sucks, chemo sucks.....but THIS just sucks the most! 0 -
I have been up all night all etnasgrl. I didn’t get the premeds until 3 pm yesterday so I think the steroid is keeping me up. Good luck today!! I was telling my husband that I wished I got cancer last year and didn’t have to deal with all this virus stuff. A cancer diagnosis is so hard just by itself let alone having to deal with all this. Let us know what your oncologist says. I am scared for my husband to even go to the store. We don’t let our kids even play with the neighbor kids. It is so hard on them. I hope they are young enough not to fully remember all this. It is also mentally exhausting being with everybody 24/7. But I can’t imagine having to go live somewhere else for 3 months and be away from them. I get so anxious thinking about the virus
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Hi all,
Etnasgrl, hope your chemo goes well today. Mine is tomorrow and hoping to get some advice on the leg aches and pains I had starting day 3 after last infusion. Gone now but probably in my future next week.
I was interested in what your oncology nurse suggested regarding you going to live elsewhere d/t family members who are out in the world daily. It certainly would be nice if we could all do that. Don't know how feasible it is for most of us. My oncologist said to stay home as much as possible and that that goes for my husband also who I am having trouble reining in. I will be interested to hear what your oncologist says.
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Okay....update! I spoke with my oncologist today and she said that what the nurse told me was general guidelines for all chemo patients. I explained my situation and she suggested that when my husband and step-daughter come home from work, they should enter the house from a separate entrance, one that I will not use. They should take off their shoes and keep them by the door to that entrance. Use hand sanitizer before walking into the house and wipe down or spray Lysol on any surfaces they touch. If they take those precautions, it should be just fine. I should be able to stay at home, without having to move in with my dad. If ANYONE in the house develops a fever, cough, or other sickness symptoms, THEN would be the time to leave and stay with my dad. So....that's the plan for now! I feel better knowing that I can stay at home with my family for the time being.
Second Taxol infusion today and it was interesting to say the least. Got my pre-meds, got my Herceptin, and then the Taxol. About 5 minutes into the Taxol, my head started buzzing, I literally saw stars and my vision started going in and out. Then, it felt like an elephant was sitting on my chest and my heart was POUNDING. I could breathe, but I could feel my throat closing, SO scary! The nurses were on it in a flash! They stopped the Taxol and quickly pushed Benadryl and more steroids. They took my blood pressure and it was 194/102!!! And my lower back was killing me. It felt like someone kicked me HARD in the back. About 20 seconds after stopping the Taxol, all those symptoms went away and I felt normal again. I was, however shaking like a leaf. About 10 minutes after the Benadryl and steroids, the shaking stopped. Half an hour later, they took my blood pressure again.....133/72....whew!!! Much better! They started the Taxol again and no further issues.
The nurse told me that about 60% of patients have a reaction on the second Taxol infusion, so it was totally normal. They said I may or may not have a reaction again on the next infusion, but will get with my oncologist to have her order a higher pre-med dose of the Benadryl and steroids, which should prevent it from happening again.
What fun!
Home now and feeling fine. A little sleepy, but that is from waking up so dang early and all the Benadryl. Being lazy for the rest of the day, lying on the couch, watching Little House on the Prairie. If last week is any indication, I should feel okay until the weekend, when the joint pain, muscle aches start to kick in. We shall see.
Hope everyone is having a good day!0 -
Etnasgrl, hoping your taking it easy, and i dont envy you that join pain, my appointments on Monday, so will be in the same boat again as you. Sorry to hear about the reaction, but glad they were able to resolve it quickly, am praying i dont have the same issue o.O but am glad you can stay home.
Everyone, stay safe and be careful, this really is the worst time to be going through this, but will only make us stronger
For me today is a good day, almost a normal day (sans hair) even put makeup on to cover my dwindling rash.
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Good morning everyone,
I find myself up early early again. I developed a urinary infection last weekend and two days ago the symptoms were worsening despite being on an antibiotic that is susceptible to the bacteria. I went into the cancer center yesterday to give another urine sample and receive fluids, steroids and nausea meds. Despite thinking I am drinking enough fluids this is my second hydration infusion since treatment 1. Those steroids seriously mess with my sleep but it does give me extra energy to do things I normally like to but don't feel like at all lately. My next infusion is next Tuesday if everything goes as planned. I am glad to hear you are doing ok etnasgrl! I wanted to also share gratitude I have today. My community has set up a fundraiser for me and the people that have stepped up have done so in a big way. This has helped emotionally more than I thought it would. Peace of mind to know I can make my medical bills right now. What a blessing. For anyone wanting to connect via social media I would love that. My facebook is Cassandra Sorenson Anderson.
Sending so much love and light to everyone.
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Good Morning Cassandra!
I've been up since 3am.....thanks to those steroids, lol! I know the feeling. But, like you said, they do give me some energy to get things done that otherwise, I just wouldn't want to do. I've cleaned my entire kitchen so far this morning and have sprayed enough Lysol on everything to kill every single germ known to man. (I hope so, anyway!)
I hope that your urinary infection clears up soon! And I know what you mean about hydration.....I've been drinking non stop, but still feel thirsty, so I guess I'm not drinking enough. Don't know what to do except walk around with an IV of fluids all day long, lol.
And that is AWESOME that your community has stepped up in such a huge way, I love that! What a blessing!
I sent you a friend request on Facebook, it's from Karen Elizabeth.
((((BIG HUGS)))) to everyone!! I hope y'all are doing well, please update as you can, I've been thinking about each of you!
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wow Karen (etnasgrl), I am so glad you are better. What a frightening experience! I had a reaction to Taxotere at my first treatment but it was just throat closing and dizziness. I am so glad your nurses jumped on the situation.
Cassandra, I have struggled with UTI’s over the years and I hope yours resolves soon. Drinking lots of water does help with UTI’s. Like you, I can’t seem to drink enough. I am always thirsty. Sounds like you live in a great community. What a blessing your community is! It does take a village to get through a serious illness, especially now. I am relying on friends to get groceries, cat medicine, etc.
Karen (etnasgrl), it sounds like your oncologist gave you very practical and sound advice. Being with your family is such a support while we go through chemo challenges. My mom was a rock after my BMX. Now it is just my son and myself....and a puppy for entertainment. My parents are elderly and 100 miles from me and I feel helpless I can’t help them more. All I been able to do Is help them order their groceries online and teach them how to do video calls.
Sharlyn25 I would be very interested in anything you learn about aches/pains. I was slayed by the bone pain after my first treatment.
Helenlouise and Nooch....how are you doing after your treatments? Jettie....make-up?!! I am impressed 😀
Cassandra, I sent you a friend request on Facebook. Anyone else who wants to connect, I am Julie Sharpe in Tifton GA . Wearing sunglasses and sporting a full head of gray hair in profile....there are many Julie Sharpe’s.
Wishing you all a good day!
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wow Karen (etnasgrl), I am so glad you are better. What a frightening experience! I had a reaction to Taxotere at my first treatment but it was just throat closing and dizziness. I am so glad your nurses jumped on the situation.
Cassandra, I have struggled with UTI's over the years and I hope yours resolves soon. Drinking lots of water does help with UTI's. Like you, I can't seem to drink enough. I am always thirsty. Sounds like you live in a great community. What a blessing your community is! It does take a village to get through a serious illness, especially now. I am relying on friends to get groceries, cat medicine, etc.
Karen (etnasgrl), it sounds like your oncologist gave you very practical and sound advice. Being with your family is such a support while we go through chemo challenges. My mom was a rock after my BMX. Now it is just my son and myself....and a puppy for entertainment. My parents are elderly and 100 miles from me and I feel helpless I can't help them more. All I been able to do Is help them order their groceries online and teach them how to do video calls.
Sharlyn25 I would be very interested in anything you learn about aches/pains. I was slayed by the bone pain after my first treatment.
Helenlouise and Nooch....how are you doing after your treatments? Jettie....make-up?!! I am impressed 😀
Cassandra, I sent you a friend request on Facebook. Anyone else who wants to connect, I am Julie Sharpe in Tifton GA . Wearing sunglasses and sporting a full head of gray hair in profile....there are many Julie Sharpe's.
Wishing you all a good day!
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