Starting chemo April 2019
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There is a new thread for people starting Chemo in May 2019,
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Thanks Princessofmeh for the feedback. Helps me not feel so 'abnormal'.
Aliceneed -while I could drive myself to treatment, I don't. To many potential adverse reactions during infusion (taxotere particularly, it's my understanding that even if you don't have an infusion reaction the first time, you still can the second). Furthermore, I usually start feeling the effects in about an hour post infusion (or less). It's nice not having to really focus on anything, much less driving. I recommend having someone there with you if possible.
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I have had friends or my husband accompany me each time. I like making it a day with my friends to talk and catch up and everything goes much faster. And they distract me!
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Hi All- First, I really enjoy reading and responding here but it seems so hard to do in this style of forum format.
I am part of several FB groups one that is BC specific but many members are done with treatment etc. and it is much easier to see each person's posts and to be able to respond directly to that post. I know it is hard for me to keep things straight and miss some postings here.
SO- I started a "Closed" FB group. Closed means only people in the group can see who the members are and what is posted and people have to request to join. I can be set to "Private" but then people can only be added by a current member- which right now is me. LOL With Closed you can request to join if you want and be added by any member. Here is more info: https://www.facebook.com/help/220336891328465
In a FB Group you do not have to become "Friends" with any members (unless you choose to) and other members can only see what you have set to public in your FB profile. So, you don't have to give up any extra privacy if that is a concern.
I purposely named it "April 2019 Community Group" so that there is no reference to BC or anything. I used this image for the cover photo so it is easy to find. Search for it and then request to join so that I can add in anyone that is interested from this group.
I will keep posting here too and will repost this message a couple of times, so everyone sees it and in case there are new "April 2019" Start dates.
Thoughts? Suggestions? Questions?
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- Alicesmeed - I have had two treatments so far. My husband came for this first and my friend came when she was done work. Second one my husband had another obligation but my friend came after work and another friend surprised me. I am perfectly fine being there by myself. Gives me time to focus and visualize any cancer cells imploding! I know the first one they prefer some being there to drive you home just in case you are tired, groggy, etc.
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My husband is with me every spa day. Which is fantastic because I dislike the lunch they serve at my cancer center so he goes to the cafeteria to fetch us both lunch like a bc version date night, LOL.
Salty, my old 2015 chemo group ultimately transitioned to a Fb group (I'd have to check, but might be a secret group?), but that happened much, much later than where we are in the treatment process. Honestly, I think we need to be here. Even if they never post directly, people still read these threads, learn from and are comforted by them because they are going through the same things. I don't think a fb group is a bad idea.. It's just too soon IMO. Personally, I wouldn't be averse to joining right now (I'm on Fb a lot as both the regular me and the writerly me -- actually I just searched for it and asked to join as the regular me so head's up, lol), but primary posting will be here at BCO for me because I know how important information is when you're first figuring things out or come upon a SE or symptom that's scaring the willies right out of you.
ETA: I'm also starting to shed my hair. Sad panda.
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Princess- I fully understand why it is important too keep posting here to help others. I see the bigger threads and topics on this page as a great source of information and think contributing on threads that are not just our April group is helpful to me and to others that will unfortunately come after us.
I am also just craving a place that is less public than this, so maybe we can talk more directly to each other and share a little be more as we are comfortable that is not fully public like this is. So, I will continue here and on FB and am happy you joined!
"See you" in both spaces!
Sorry about the hair-Mine is surely a day or two away. The last 4 days it has felt like I have a thin layer of hot sauce on my head. Not "painfuL" but really irritating!Karen
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Yeah, I'm an author so I've had 10 years of experience in managing privacy vs persona, figuring out what I can keep to myself and what I'm willing to share with readers and colleagues. Mind you, some authors let it all hang out privacy-wise, but I'm not one of them, LOL. Still, there's a public me. When you work in entertainment, the job costing some degree of privacy is in the fine print of our ticket to ride, just how it is.
I figure I have today and possibly tomorrow with my hair, but my scalp has been powerful tingly and tender. Then it's hats and etc for the duration. At least I've done it before. The first time you see yourself bold and bald, that's a shock, but I already know what I'm going to look like.
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Hi All, Today was a pretty good day for me.
Hi SaltyPepper, I like the FB idea, I find myself having a hard time following this format
I really like the support, advice, and updates from everyone here I just feel that I am missing a lot of posts. I to will try and post on both sites.
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Hi All,
My second chemo (TC) is in the books. Didn't go as smoothly as the first. I ended up reacting to the cytoxan with racking body pain that took my breath away. At first I thought it would stop on its own but after the third wave I knew to speak up. The nurse got my MO and they stopped everything, flushed my system with saline and then gave me more benadryl which put me right out. Did the trick but have a mild headache. Just took an Ativan and going to head to bed shortly.. Whew! At least I can say I am halfway done now. Hope everyone is doing ok. Going to acupuncturist tomorrow.
Pics below the one of me in at the "spa" are of my halo wig made out of my own hair by Chemo Diva. Got it back within the same week I sent in my hair! Highly recommend and insurance covers it!
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The wig turned out really nice! So sorry you had a bad reaction.
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ILOVERMONT,
So bummed to hear you had a bad reaction to the cytoxan. You’re right, half way done now. Hope you get some rest and then on to smooth sailing during your down time.
Love your halo pony tails and hair pieces, super cute.
I had my 2nd TC yesterday, everything seems the same as last time. On my steroid high today, getting lots done. But I know the down days 4-6 are coming for me. Theygave me taxotere very slow first and then the cytoxan. Don’t know if that matters.
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OMG, day 3 and I've felt awful since the afternoon. Lightheaded, blood pressure has been up .. been drinking a lot of water and peeing it out. Also everything smells dusty to me today. It's so odd but certainly not helping how I'm feeling. I have some air filters going now.
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A dump question. Is claritin a pill or an injection? Can I get it without a prescription? (I know it is not claritin-D).
I had my chemo yesterday and the onbody self injection Neulasta this afternoon. The back of my left shoulder is aching, I do not know whether it is related. I know a side effect is bone pain, but I did not expect it to be the shoulder. Is it what claritin is for treating the pain?
I do not think I was given claritin during chemo and plan to ask the oncologist tomorrow.
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Claritin is the over-the-counter allergy pill. 1 pill for 24 hours. Claritin is taken to avoid the pain from Neulasta. You normally want to start Claritin 2 days before chemo days and take for 7 days.
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santabarbarian, I know Claritin-D is over the counter, but will I be able to get Claritin which is used to combat Neulasta without a prescription? Thinking to ask the doc tomorrow but I knew she is not in the office, therefore there will be delays, but if I can get it myself, I will get it first thing in the morning.
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Yes, whatever they have over the counter is fine... the one pill per 24 hour dose.
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You can even do the generic of claritin
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Thanks, DebraC. Glad to hear yours went smoothly. Hope that continues for you after the steroids wear off!
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You can experiment with what works for you as far as the claritin goes. Last spa day, I only took it the day of nuelasta and the day after. I don't need to be on it a week solid. YMMV, of course.
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Wow- ILOVERMONT
I am sorry you had such a tough time on round 2 it is a good reminder for us all to advocate for ourselves.
I love your halo wig. I saved my hair, I should send it in, just to have as and option I guess.
Hope you are feeling better.
Claritin-D is NOT what anyone wants for the side effects- and it the one that is behind the counter that you have to sign and ask the pharmacist for. You want just plain Claritin or the generic. It is taken one every 24 hours.
Karen0 -
Congrats to those getting another treatment done! ILOVERMONT, I am very sorry to hear about your bad reaction to the drugs. Do you feel better/same now as round 1 or completely different with SE's? I am curious to know whether you can expect same/similar SE's as the 1st round or whether there is a significant cumulative effect which makes it worse as you go?
I am on day 10 after round 1. Feeling pretty good, although I developed a cough and had some chest heaviness which I will bring up next time I go in but overall think it is getting better. No fever. Did anyone else experience this?
My mouth which felt so dry the last week, finally is starting to feel normal, my sense of taste is starting to come back a bit and I still have my hair! Although expecting that to start to go any day. It was funny with the taste thing. About the only thing I could really taste well was chocolate, good timing with Easter as there was a lot of it around!
I am back in the office this week so feeling pretty fatigued by the end of day but manageable. I think that my schedule will be - the week of treatment work from home/take sick days, then 2 weeks in the office, then repeat.
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Wow! Thank you, everyone for the kind words. You all look amazing. I love the photos. What spectacular beauties you all are! You look amazing with and without your wigs.
So, I had my chemo port installed on Tuesday and then ended up in the ER that night with a punctured lung. I'm still hospitalized. They gave me a chest tube and re-inflated my lung (which was super painful). My lung collapsed again this morning. There was some issue with the tube the ER put in. So I'm just waiting to have surgery to replace the tube today. What luck, right? It is the first time my surgeon has ever punctured a lung.
My oncologist and the doctor at the hospital collaborated and moved my bone scan and echocardiograph to the hospital, so I'll have those today after the surgery.
As usual, reading your posts is incredibly comforting.
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Fac03 - the generic for Claritin is Loratadine. You can purchase it at Walmart, Walgreens, etc.
ILOVERMONT - sorry to hear of your reaction during round 2. Sounds like they took good care of you however. Hope your doing lots better now. LOVE the way the company recycled your natural hair!
Stayingpositive2019 - I experienced chest heaviness too, but it went away. Not sure about the cough, I had a cough too in week 2, but attributed it to allergies or my post radiation possible lung exposure.
Had my 'spa day' on Tuesday and the infusion went fine. Similar to first infusion, I developed heartburn shortly thereafter and had it all day yesterday, but it seems to be lessoning now. Working at home and other than be extremely tired, no other SE's right now.
SaltyPepper - I'm glad you have a different forum (FB) that you can lean on and learn from. I gather that others like it too. No offense, but I like this format and reading of experiences of others, in addition, the articles that are posted on this website are evidenced based of which I have referenced frequently. I also appreciate the moderators chiming in every once in a while along with the women who have been on this journey before chiming in and offering advice. I dropped FB some time ago and have no intention of joining again. Best regards with your continued journey wherever you find your best support.
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Wow, ellientta, that's horrible. I hope they've got you on the mend soon!
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ellientta
Oh no! A punctured lung from your port placement?? In my mind, I am not sure how that can even happen, but I am very sorry that it did. Hope you are healing soon.
Karen
robinredbre… No offense at all! This is not a choose one situation for me. I love the resources here on this site in all of the other topic areas etc. A long history of others stories, tips and tricks is invaluable for me too! I just wish this forum format was easier to thread and follow. I am not going anywhere and will jump in here to add support when I have something to share.
Happy to have found you all!
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Oh no Ellientta! I was told when signing the consent that this was a risk, but never thought it actually happened. I'm so sorry. Hopefully your lung will stay inflated and all will proceed well. I'll keep you in my thoughts.
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I just had my first AC chemo on Tuesday. Yesterday, I felt tired. Today, I am achy all over and my head is all foggy. I am thankful to read the posts on here to remind me that I am not alone in my journey.
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I had my third AC this afternoon. Feeling v tired/sedated now, but otherwise ok. They did note that while my white count was fine (thanks to Neulasta) I'm anemic, hematocrit is down. So that explains some fatigue overall. I guess they;ll keep an eye on it. I also did chew ice during the AC infusion this time. It's hard that just when you are feeling okay again, you have to have another cycle. At least I can say 3/4 AC are done.
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Like farfalla I had my 3rd round of AC yesterday. 75% done with the beast! It was just like the first two. I don't have any SE today, slept well last night. Not super hungry.
Hair update: started the big shed at day 17 and I put all my shed into baggies and dated them. I shed for about 9 days and then stopped. Lost about 50%. MO said to expect another shed 17 days after Round 2, which will be this weekend. But maybe the Paxman will slow it down some this time. Each round will have a period of shedding.
Ilovermont, love love your halo! Sorry you had a scare with chemo.
Whoever asked about melatonin, I asked my MO Wed again about melatonin and Benadryl for sleep and he said both fine.
Good thoughts for a good weekend for everyone. MM
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