Starting chemo June 2021
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Debrandbran94- I i hope you stay safe and those Covid shots hold up. I was listening to the news and they were talked about a booster shot for some including cancer patients. I understand your fear. The doctor will want to know about your son. Do you have a portal online to post messages?
I read your post and had to share. I was 2 months from turning 61 and healthy my whole life. Shingles in 2016 was my 1st illness, beyond strep throat in my late teens. Lump in breast, no lymph nodes and thinking 4 infusions in 3 months. Genetics study at City of Hope asked if I would like to be part of, so off vials of my blood went. Just one day before my 4 infusions were to begin, update. I carry the BRCA3 gene. Now i get an infusion a week of taxol and the drug focused on the gene. My mass was 5.3cm, so radiation was not in my house, chemo from the start and no lumpectomy. Shrink the tumor, Your comment on Day 4 and 5 remind me that it is a toss up. I will not know when or what symptom i will get. I have 3 meds for nausea and throwing up and heart burn. I so dislike those symptoms. Another friend says all my hair will go. A short haircut Monday at 9am today. Long hair will be curled today. One last time for now. I wanted to do the cold cap, but now with 12 infusions I thought really? As i walk around the City of Hope and see all the bald heads, I ask myself if keep my hair would make me feel normal? My gene from genetics targets breast, ovaries and more. If i had a prostate, then that is a target. Fear comes in waves. If i get steroids, Benadryl and nausea medication before chemo each time. Wow did that make me sleepy. and 12 weeks of steroids. I need to get out and walk early. Steroids are bloating.
I hope your days improve. Water tasting bad! I have thought about that for days. The water you drink for CT's is bad. I know as cancer patients that those are taken sometimes more than we like. Praying better days have been happening.
To all, I think the drugs helped before the infusion for my first time. You shared so many good tips and experiences. Thank you. I am one day out from my first infusion. I just got on this road.
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Hello Deband, I think we are all scared. I know I am. I am doing chemo and surgery and possibly radiation. I have tried to eat healthier but had had a hard time as everything that is really good for me taste terrible with chemo.
I think we all find this scary. I even had to take anxiety pills in the beginning. I don’t now. But in the beginning I was so so scared I could not function. I’m still scared but I have learned to lean on my Faith and trust my God and my drs. I figured if I don’t throw everything at this and it came back that would be worse.
The main thing is having peace with the decisions you make. Ultimately it has to be up to you and then you make peace with the decision you made and move on. I hope your cold cap works, I didn’t have that available to me. And losing most of my hair has been really really hard.
Sending prayers and hugs for you and know your decisions are yours and no one else’s.
Lover of Je
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Thank you so much for the words of encouragement. I did let the dr know about my son, they just suggested I take a COVID test this week. I’m going to Stanford and there are so many hands involved I feel I am treated as a number, not an individual. Today is day 10 for me of my first cycle and I’m finally feeling closer to my self
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Hi Debandbran, I’m at Stanford, too, maybe we will cross paths in the waiting room sometime! Make liberal use of their online message system for ANYTHING you’re worried about or just to give them a heads up on any side effects, the nurses do reply quickly or call back - if you make some noise you will get attention and hopefully feel less like just a number there. (though I remain unimpressed with the people who staff the weekend call center)
I know what you mean about being scared. Throughout it all I keep telling myself I just have to show up. But had a really hard time before my most recent infusion, dreading it so much. Couldn’t help thinking “I don’t want to do this” and ended up crying during my pre-infusion dr appointment. Love my Dr so much, she told me I WILL get through it, even the strongest people need to be able to lose it every now and then. And I am thankful that I did get through my first taxol infusion without major reaction (had heard about so many people needing to delay chemo because of allergic reaction to taxol). And now on day 3, the side effects are not as bad as the AC! I feel crappy and fatigued, but not so 100% flattened.So thankful for everyone on this message board. I love my IRL friends but people here really “get it” in a way that people without cancer simply can’t.
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BeitchAppetite……..I too have had trouble losing weight and drinking enough water. After 4 infusions I have found that an anti anxiety pill reduces stress the days after infusion and gives me some appetite.. Some take Ativan (sp) or Valium. Relaxes my mind and I can eat watermelon, tangerines, bananas and very cold G2 Gatorade. The Zofran works but the constipation is pretty bad so you are on stool softeners each time and I think those dissolving tabs taste gross.
I also drink chocolate Boost or ensure for nutrition, but, ICY cold.
Nasuea……I tried THC as it's legal here. The dispensaries can tell you the strand that works for nausea. I tried edibles and they are too strong and I don't like smoking it, but am going to try it again.Hydration…..Water was a much bigger challenge. Some put lemon in it. I can drink water if it's Iced COLD. So I put the little water bottles in my freezer. In the morning I stick a couple in the frig for later in the day. it works great, the liquid forms into a frozen stick that stands in the middle to keep it all icy. Even better, when I go out in the car I take a solid one which melts very slowly throughout the day. On my Friday infusion I left a frozen one in my car and hours later it was still cold for my trip home.
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mle42 & Dicon- Thank you for posting. I want to hear how people feel and what works. My first infusion with taxol and another drug were ok. Likely because i got sleep inducing Benadryl, steroids and something else. Only my first, so I am loading up on other items i may need. Dry mouth stuff and the Biotin mouthwash and lozenges. Throwing up and feeling nauseous are not my friends. My nurse at the chemo treatment was so helpful. I have 11 more weeks, Friday for each, for the treatments. Hair being cut tomorrow. Middle of the back to short. Getting ready. Keep posting.......
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Hello Everyone, just letting you know about this!
TODAY: Zoom virtual meet-up for people going through chemotherapy (caregivers welcome)
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Hi everyone!
I hope you have all done well with treatments of you had them today. And I hope you all are removing from treatments and gaining your energy back.
I had my first Taxol treatment today. Other than tired from the premeds IV Benadryl, IV steroids, and an IV anti nausea I feel better this time than with any of thenAC. They did lower the steroids since I’m super sensitive to them and I’ll be getting them every week.
Praying this is the way I feel each time.
Hugs to all
Lover of Jesus
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mle42..
Very excited to hear the Taxol is not as fatiguing. Jus finished #4AC and it’s tempting to just stop the torture. My Onc did agree I could do the taxol on a 3 week schedule for more recovery time. I really don’t feel normal until day 9 or 10:probably due to the fact I’m a senior. I had dropped the steroids on the AC on second infusion and didn’t really need it.
However they say I will have to go on the steroids with TC, but a lower dose. I was told allergic reactions can be major so I’m doing 2 pills I n am and 2 in evening, instead of 5. My face blows up and my brain is so fogged with the steroids I can hardly converse.
Any ray of hope that AC won’t be as bad as TC will keep me going on those days I just don’t think I can go on…
Thanks for posting about the TC, I’m very interested inANYTHING positive!
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Only at Day 4 after my first infusion do i feel weird. My friend and sister said likely steroids. A feeling of blah. I took a Nausea pill each day. Just one in the morning. I had a pap smear yesterday and Thursday i meet with the Gyno surgeon on removing ovaries or more. Today I am feeling the feelings today. In early June I was safe from Covid and donating platelets as i have been for 25 yrs at the Red Cross. Doing life, planning a trip to visit my sister in NY. I was looking to get out of my office at work once we return. The supv is a bully and authoritarian, but not to you. He seems only kind. I just could not take him after 3 years. Then 3rd week of June i find the lump. Doctor to doctor to doctor and here i am less than 2 months away with a BRCA-2 diagnosis and almost certain knowledge i will have a double mastectomy and a hysterectomy and or ovaries only removed. POW! Acceptance. A tough place to reach. I had my hair cut yesterday to above my shoulders. For me, that has been the hardest these last 24hours. I expect the rest to fall out in a week or two, but i wanted to be ready. To at least to get some loss felt and know one day, it will grow again. These are all losses I share with so many of you.
11 chemos to do. My 2nd this Friday. I am going to talk with the MO on levels of this pill and that one and how long can i take them. I have seldom taken any pills.
Looks like osteoporosis is in me. I am at least 4 inches shorter. My Mom shrunk. Same for me know. I did not know i was going this way, in my writing, but it is where i am.
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Hope everyone is doing okay - getting thru it at least.
Well, chemo is the gift that keeps on giving - just diagnosed with Neutropenia so on antibiotics and having to stay isolated now. Was going to go to an antique fair on Friday - nope not allowed around any crowds.
Moral of the story take the dangneulasta even if it causes bone pain. I opted out of it with my last chemo which wasn’t a good idea.
Sending y’all hugs!
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whelp, maybe I spoke too soon r,.e. Taxol being easier than AC. little to no nausea, but the fatigue and aching everything showed up, just took a couple days longer than it did with AC. Muscle aches are bad enough I don’t really sleep. But not being nauseous is HUGE and I’m still very grateful for that. Taking the wins where I can.
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carlsoda so sorry to hear that!!
Mle42- I agree with you. I think nausea is the side effect I struggle with the most. Hang in there
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thank you Mle42, what days are you at Stanford? I’d love to talk sometime… my infusions are Friday’s, my 2nd is coming up on 8/27
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What is ac, and what is taxol? My infusions are Cytoxan and Taxotere.
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checking in...
LoJ - glad to hear your Taxol was going better. Are you doing cold gloves/booties? I bought some just to hedge my bet a bit. I start mine next week and for some reason I am more nervous about having the reaction. Also they have me starting with 40mg (20 two times) 12 hours before start. I guess to help ward off any reaction...that just seems like a lot, I know those steroids mess me up. Ugh.
I thought I was doing better on AC #4 but yesterday (day 6) I felt horrible...had to lay down most of day, almost felt feverish but didn't register a fever. It was one of the worst days yet...but I seem better today. So hoping it was just that cumulative effect and hopefully turning the corner.
KGobby - the rollercoaster is quite the ride....I feel like I won't really feel the feeling until I am done with all this treatment and intense trying to get thru. I can't wait to just feel relaxed again, I feel so on edge/anxious, and I am generally cool as a cucumber. I hope your treatments go well.
Carlsoda - hope you feel better soon - that stinks! Yes we really can't predict what our bodies will do on this. Then add the threat of covid and all this other stuff...ugh...one day at a time, keep going.
mle42 - thanks for your honesty on taxol. Yes I am more nervous about that one. I did read people taking epson salt bath so I am going to be prepared to do that, as it helps with the aching. I wonder did they say anything about continuing to take claritin for bone pain?
Monarch - hope you are doing well!
Debrand - AC + T is just another type of Chemo drugs...it seems like most BC patients get one or the other...AC+T or CT... A, also known as the red devil, can have heart effects, so it is considered pretty aggressive treatment. And there's a limit at which you can get in your lifetime. I had to get an echocardiogram done before to be cleared to take this chemo. It's a nightmare, but it's over! thank God.
Anyone get any advice from their Oncs on getting the covid vaccine booster shot? I am wondering if they recommend it during treatment or not... will talk to mine next week. I am taking every precaution, but really don't want to get covid in the middle of cancer.
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BtwnStars - yes, I’ve continued to take Claritin with taxol since I’m still on neulasta. I didn’t have this severity of aches and pains during AC with neulasta, so figure it may just be the taxol itself. Turns out I also had a fever yesterday which I’m sure contributed to the overall crappitude feeling. Better today (now day 7 after infusion).
I asked my oncologist last week about the COVID booster, she said she would recommend waiting until after chemo because while on chemo and immunosuppressed I might not generate the needed response and it might not do much good. Interested to hear if other people’s docs have the same recommendation.
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Hello everyone!
I’m still doing good from Taxol. Soaked in epsom salt bath tonight to detox.
Btwn- I’m not icing yet. I am taking L glutamine for mouth sores which is also supposed to help for neuropathy. We will see. I was going to take Quercetin. But then saw a study where is made Er positive cancer worse. So decided against it.
I am praying I continue to do good on Taxol.
Praying for all you guys.
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I had my 2nd infusion of 12 on Friday. I have taken anti nausea and worked on 1-2 liters of water a day. Taxol and Carboplatin due to my wonderful gene BRCA-2.......Fun. Port finally is all good. I actually worked in our office sorting, trashing and shredded the following 2 days after i had it put in. That is who i am. All was good. It healed. Just steri strip stuck a bit. Couple days to peel off easy. My friend said take Glutamine too. I mentioned it to my MO, but i need to ask again. It is not in my list of items i take on the portal for COH. I am day 2 only with 5 to go. At day 4 i felt weird last week. I can say here that constipation has never been a problem. Well anti nausea stuff changed that. So Maalox is now with me. Hair cut to above my shoulders for the first time in 40 years. Next, once it starts coming out, all gone. Wigs and hats. City of Hope is a cancer hospital, and nothing on the booster yet.
Thank you for your sharings all.
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Had my 4th of 4 AC treatments this past Tuesday. This one kicked my butt. I had to go in on Thursday for fluids. I didn't know/realize that this was standing orders as I hadn't been getting them. I also didn't realize how horrible I felt until I was given the fluids.
Tuesday was rough. When they went to give me my two Red Devils infusions, there was no flashback of blood in the port, so...the nurse who was doing it is one I hadn't had before and she was saying that it was hard to "push". They ended up accessing my port 3 times that day. I can normally handle it, but this was bad. They finally on the third access, was able to get it to go. I of course, made a joke that my right boob wasn't getting bigger than the left, so it must be going to where it needs to. Scary to think that it would just turn my insides to mush otherwise. I also got up and went to the restroom during my infusion, which I normally don't do and saw the usual red, so I felt better about it. It was stressful. I've been fortunate with my taste being okay, but this week it finally took a downturn. I switched to plastic silverware and am struggling to eat. Not normally an issue for me, lol. I'm down 7 pounds since I started mid June, which isn't much and could afford to lose quite a bit more before I'd be down to what a normal BMI would be for most people. I still feel icky. I just want to feel okay. Not great, but okay.
I start my 12 weekly infusions of Taxol on the 31st. As of today, I'm still bruised and sore am not wanting to go. I will do it, but it's going to take me some talking myself into going to get me to go next week.
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Lets keep ourselves Motivated. I know our side affects may be different, but when i hear about yours, I look at how i feel and may feel. That is good.
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I’ll have my second. Taxol tomorrow. I’m still praying SE will be few if any.
I have not really had a lot of side effects other than tiredness. I have not been nauseous at all even with the AC. But they gave me steroids, short term anti nausea and long term anti nausea meds in my infusion. So I actually have felt fine other than just being tired a few days after infusion. But with the Taxol I have not felt that way. I have walked some when it is not smoldering out. And I have felt even better than I did with the AC. I’m just praying I do not get the neuropathy.
Praying for you all on here. And please know I truly am thankful for you.
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LoverofJesus,
Thank you for posting. I've been a hot mess with getting ready to start Taxol after AC.
On the positive side, I don't need to cold cap, because I lost all of my hair with AC:-)
I hope that I don't have the SE that I had on AC. I lost 10 pounds, had it to lose and a whole lot more, but it wasn't pretty.
I'm thankful to hear that your symptoms have been minimal, this gives me hope, thank you.
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hi ladies. I’m in the infusion center getting my last treatment. So happy.
But because of my chek2 status and my Mammaprint came back high risk for recurrence and the fact that my sister has ovarian cancer he’s recommending I get my ovaries out ASAP. Probably it will be a full hysterectomy. So I will start out on tamoxifen and then switch to an A1 after the surgery. It’s a lot at 45. But I appreciate the aggressiveness of my doctors.
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I started Taxol last week and it has not been easier for me, so far. On AC I had all the meds so I really didn't suffer too much. For Taxol I am having bad muscle/bone/joint pain, which ib profin only does so much. I am going to talk to doctor about options. Also I had a weird reaction to benadryl, whereas most people get sleepy, some can get the jitters...I was having weird knee jerk type movements in my arms, back, legs. Finally after an hour or so my body got used to it and was able to rest. Nurse said I should ask for benadryl to be reduced next time.
I was fine day after Taxol, but next 2 days were tough. I took epsom salt bath to help with aches and it relieves it for an hour or so. All I could do was rest, lay down and sleep, whereas on AC I was able to be up way more. Finally day 4, it seems like its starting to subside and I hope I can get back to some walking/exercise this week to feel better. I am ready to be done.
Monarch - yay for last treatment! glad you have a plan with doctors.
Also when I saw my MO, she is recommending I wait until about a month after treatment ends to get booster shot. Since we don't really don't if chemo drugs will affect efficacy. I am trying to figure out if I can find a way to continue to work from home until that time, which I hope.
Hope everyone is hanging in there!
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BtwnStrs
My oncologist told me yesterday that I needed to get the booster shot. Now. I had the Moderna vaccine in February/March this year and had a reaction to that. My husband and I both had COVID last November. I'm NOT looking forward to having the booster shot so am going to time it to have on a Friday so when I feel horrible I at least won't have to be at work.
First Taxol yesterday and so far, so good. Not much sleep last night, but that is normal with the steroids, benadryl and everything else that we get. I was very nervous due to the whole last AC that I had, but I will get through it. I did get some anti-anxiety meds from my regular doctor to take, but was worried about taking it the day of my chemo. I'm a don't take a Tylenol girl normally, but that has since changed since June 15th
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Hello everyone! I hope you all are having a good weekend!
I have a question, for those of you that are doing chemo BEFORE surgery, how do you get past the mental aspect of this cancer is still there and just wanting it out during all the chemo. I know chemo is working on the cancer, but honestly I just want it out!! How do you get past that??
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Hi LoverofJesus, I think what helped me get through it during neoadjuvant therapy is the fact that chemo isn't only working to shrink the obvious tumors. I imagined it going through my body and killing off those lone rebels that may be floating around looking for a new spot to take hold of, since the chemo is systemic.
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Hi everyone! Had my 4 week post chemo check up. Went super well. Dr. said she has never seen anyone’s blood work bounce back to normal so fast! So my almost non-existent white blood cell count is normal and my RBC count is also normal - yay!!!
Monday I start on Letrozole and in October I will start on twice yearly infusions of Zometa to keep my bones healthy and it also reduces the risk of mets.
So this chapter has ended ( thank you dear Lord) and the next chapter begins!
Soon you all will be done and moving on to the next treatment plan. I wishyou all the very best, successful treatments we have been through and adjust well to our new norm of life!!
Hugs to you all!!
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