Chemo Starting August 2018
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Hello , I did miss post from Micyn- I decided to give a chance for cold caps- they have Paxman machines at the hospital - will let you know about it. I heard that thick hair is better , patients still shade but less with thick hair.
Moonrabbit- hugs!!! Hope you feel better now!!!
God knows I wish no one should go through this! ❤️My chemo class is August 1, nipple removal on August 2 and port placement - August 6.
Praying for so much strength for us!!
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Jimiwithani- welcome, so sad to hear you joining us. I never heard of hormone negstive in breast yet positive in lymph nodes! And no one mentioned to stay home kind of quarantine before chemo treatment- maybe you have underlying conditions?
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bostoniangal....pretty healthy other some extra weight. I just have to be unique I guess. Port surgery tomorrow the chemo Thursday. Praying for an uneventful two days. I hope the same for everyone else
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Moonrabbit ..Sorry to hear bout the headache. Hopefully it will go away once you are able to get a nice LONG restful nights sleep ..hopefully it happened (after your 1:22am post).. RN told me I may have hard time sleeping tonight due to the steroids given with nausea meds this AM. I'm naturally one that doesn't like to sit for too long . It's almost midnight, I was up @4:18am ..and I STILL don't feel tired ! I may try the Benadryl like Sunnybear mentioned. I had also discussed it with RN today. My biggest bothersome issue is stomach cramps that come on suddenly. Hope it stops before I go to sleep. Dry mouth here too. The treament itself was not as bad as I had imagined .
Jimiwithani...Welcome! I Hope chemo class went well. Thinking of you in the days ahead with your port tomorrow, and start of chemo Thursday. What treament will you be on ? Let us know how it goes( when you can). I know you have a very busy week ahead.
SunnyBear...Glad to hear your issues are improving. I go for Neulesta shot tomorrow, and do worry a little about possible bone pain. I have so much arthritis pain as is. Hope yours is completely gone away now. I see we are on same tx.., TCx4. I also brought up the icing for Neuropathy. MO said its not necessary, but later said, if I tolerate tx well, he may go to 6 tx, and if I have any signs of Neuropathy I'm to let him know immediately. So I was a little confused by that. I did decide against cold capping. For me, it seemed too much of hassle. I chatted with lady who had friend do it. She said she still had hair thinning, not complete loss, but wouldnt do it again. I look at this hair thing as a New beginning..needless to say, I'm not thrilled about the idea of going bald... BUT, I will adjust, and be Ok.I've seen many beautiful ladies here with pics and they are just lovely. That helped in my decision making.
RimRoc..Welcome aboard the chemo train we would rather not ride. Wish I had an answer for you, I'm clueless. I do think it's something you really need to ask your MO. Your chemo situation is similar to mine. I was told no chemo, and was set to start radiation in 2 hours when my RO called me & said.. change of plans. We got your Onco score back, and it's 37. MO sent me for 2nd opinion, rest is history. Good luck. I feel for you. Looks like same treatment I started today. So far, it's easier then I expected. One down, 3 to go. As my DH said, "You are 25% through"!
Goodnight to all! I pray everyone has a peaceful evening, and a better tomorrow..Big 🤗, Cyn
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hi RimRoc: I’m not on the same chemo as you (I have first 4 rounds of AC scheduled), but I am planning, and got the go ahead, to fly to our planned vacation two days after my second infusion, and I will return two Days before the third. This vacations means so much to me. I hope that you will be able to go on yours. I will be leaving during hair loss time, so it should be interesting as to how that all goes.
Headaches still there, Tylenol controls them. Was up last night when the Tylenol wears off. Took more to go to sleep. I’m busy with my kids and cleaning every day (for some reason that doesn’t stop when you have cancer...). Looking forward to a calm (rainy) day!
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Hello Hughope here, just want to wish you all the best, I get blood drawn today, port put in tomorrow, and tchp chemo friday. I am thankful for all the info you ladies have provided. Stay strong!
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Hi ladies,
Glad to meet you all. There is another separate post for August group, we should try to combine the two together.
I am starting this Friday (8/5) for 4 rounds of TC. Glad to have you guys together along the journey
I just received my penguin caps today. Will start training with my hubby and friend tomorrow. Really don't want to lose my hair.
RimRoc, when is your travel planned? I am thinking if it's not too far in the future, you can always finish the travel and then start chemo. That's what happened to me. I planned a big three-week vacation beginning of this year before my diagnosis. I found out that I need to do chemo almost right before the trip. After discussing with my doctor, he said chemo is not an urgent thing and I should go and enjoy myself. My surgery is on 5/30 and will start chemo this week, so almost two months break in between. Like my surgeon always say, cancer is an emotional emergency but not medical emergency. Hope this helps.
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Hi guys, I'm from the Feb group, just finished in July & I'm just popping in to cheer you on! Soon you too will be done with chemo. Just take it one step at a time.
Regarding the self-quarantine - you will get a sense quickly from your blood counts how you're reacting, and if you're using neulasta/neupogen how it works for you. Most people's white blood cells drop around day 7 post chemotherapy treatment. At that time, you are immuno-compromised and a common cold virus, foodborne disease, an unvaccinated child sick with measles or chicken pox, a small cut that becomes infected etc could cause serious illness if you have no white blood cells to fight it.
I had NO underlying health conditions, was otherwise totally healthy but my white blood counts dropped to essentially zero time & again, and twice I started running a fever and was admitted to hospital both times for 5 days of IV antibiotics. Febrile neutropenia has an estimated 5-20% fatality rate if it's not promptly treated.
So my advice would be to learn to read your blood test reports and if your WBCs do drop, stay away from crowds, shopping malls, sick people etc, use hand sanitizer and disinfecting wipes etc etc. and if you feel feverish or ill, check your temperature and act promptly if it's over whatever your chemo center said at their chemo teach (our threshold is 38C)
Many people do just fine, maintain their wbc's enough that they can work & go places but you can't predict who will have low counts.best wishes to all of you!
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moth: thank you so much for the encouragement! I will remember the tons of hand sanitizer on vacation, and will remind my kids to also help me keep our hotel room clean by helping me to wipe down everything. A hand sanitizer by the door will help too I think. I’m going to go wig shopping tomorrow, I think. Get a feel for what’s out there
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Moth..Thanks for the support & encouragement. I truely appreciate it. It's nice to hear from others that have gone through it, and despite setbacks, are doing OK. I didn't realize blood counts could drop like that, while getting Neulesta shots. Wow.. So glad you are doing well! 🤗Cyn
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Hello ladies, yesterday was my first infusion (TCHx6). No headache or nausea- I know it's too soon to tell but I'm hoping it won't be so bad in the next few days. But I have been drinking lots of water since yesterday.
Nurse said first session is longer as they need to monitor me for any allergic reaction, i spent 2 hours sleeping cause of the Benadryl. Then they dont make the IV drip quick enough to travel on my veins, took forever to finish each bag.
They gave me lots of anti-nausea meds, Tylenol for headache and 5 dose of Zarxio pens to inject on my tummy in the next few days to prevent the WBC from Going down. My kids start school next week so I hope not to be sick.
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Hello Hughope here, I am leaving for hospital shortly to get port put in and chemo starts tomorrow. Good luck and keep us post.
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Jimiwithani - Good luck today - I think this is your first treatment. You will be fine!!
RimRoc - I echo the others with travel. I was told I could travel but use common sense. You have time between the 2nd and 3rd week but ask your MO.
HugHope1 - Good luck with your port today and will be thinking of you tomorrow.
SunnyChilly - We should combine the groups. I didn't realize there was already a group. Good luck Friday!
Moth - Thanks so much for popping in to provide advice and encouragement!
Cyn - The Neulasta SEs were just strange. I had some aches and was tired Days 3-5. But, apparently the bones in my chest hurt enough in the middle of the night to make me think it was a heart issue. It went away and then I had the back spasms for a day. Nothing bad but when I mentioned it yesterday during my week follow-up the nurse said that it was from the Neulasta. Just wanted to put that out there in case someone else had something similar..... Good luck with the wig shopping. I keep trying mine on to get used to it. Still not there but more prepared than I thought I would be. I am sure when the hair starts to go it will be difficult but I too am encouraged by others pictures!
Moonrabbit - Glad to hear Tylenol is helping. Enjoy the vacation. I too stocked up on hand sanitizer!
LivM - Glad you didn't have any issues yesterday. Hope that continues!
Overall my SEs have been minimal. I am a week out and not taking Zofran. Still taking Claritin (just in case). Other than days 3-5 I have functioned the same as before - still working, excercising, chores, etc. Hope it continues!
Take care everyone! Keeping you all in my thoughts!
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Hello everyone! I’m going for port placement tomorrow, and starting chemo (TC x 4) on Aug 9th. I’m going to try cold capping with Penguin Caps, and icing my hands and feet to prevent neuropathy. I’m SO encouraged by the posts of those that have already started, and those who have finished and jumped in to post their experiences. Like you RimRoc, all my pathology indicated no chemo until my OncotypeDX came back a 49, so I have been having a hard time dealing with it (I’m ok now). I think being told I had to have chemo hit me way harder than being told I had cancer.
Anyway, I hope everyone is having a good day today. I’m so glad to be in the August group! You guys are great
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Ok, I now have a plan and had a nice chat with the NP in the oncology office. I will start TC (4 treatments, 3 weeks apart) on Aug 7. The NP said it would be highly likely that I can keep my travel plans for August 24...I will be getting back just before treatment #2. I've worked out a work schedule where I can go in a day or two a week (I only work part-time anyway). So it all sounds workable. I never did have time to get a 2nd opinion but the research on the effect of delaying chemo after surgery, especially for TN, was just too much. So I'm plunging ahead and truly hoping that all the stuff they say about TC being fairly tolerable is true!
One funny side note: I had already started arimidex but my MO told me to stop on the grounds that I already had osteoporosis...but I had been told by my primary care doc that I was fine...time for a bit more digging into details.
Anyway, I will be joining the chemo club any day now. Still wrestling with the cold cap decision...anyone know how much it costs???
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hi there ladies! Day 6 after chemo and it’s a good day. Headache seems to be subsiding and I went wig shopping. Decided to go with something a little more fun than I usually have. So instead of plain medium brown, I went with a curly reddish brown with lighter highlights. Fun!
Just to add: with my neulasta shot, I had some very hot hot flashes and some ache in my teeth during the injection time. So I’m going to enjoy the week off until my next round on the 10th.
Good luck ladies
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so happy things are going OK MoonRabbit15!!
Very heartening for the rest of us. Many thanks.
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RimRoc, see the post below from Heart song that I copied from the Cold Cap Users Past & Present thread (lots of great info there) under Managing Side Effects:
Hello my comrades! I just wanted to tell you of my cold capping experience and give you as much info as I can, so you will be prepared for the trauma of losing lots of hair, but hopefully keeping enough to cover your head! I am more than happy to tell all about this process so please let me know if you have any questions or need any clarification. I absolutely hated the process of cold capping- it made me feel more and more nauseous every time, but I would do it again, and that's saying a lot!!!!!! Perhaps Ativan would help with the nausea?
First and most importantly, HAIR TO STAY is an organization that helps you pay for this!!!!!!!! It is an easy application and they paid for more than half the cost. Second, and of equal importance, penguin cold caps loaned me "discounted caps" when I told them I couldn't afford their caps. I don't know if this was just my lucky day, or what, but you can always ask.
I started with a VERY thick head of hair. First of 4 doses TC March 19th. First big hair loss was around 18 days later. Lost A LOT of hair and it was horrific!!! Bathroom waste basket seemingly full of hair for a couple of months. Combed daily in the AM with wide toothed comb. Used scrunchies (cringe, not my thing) to prevent extra pulling. Washed my hair every 4 days at the most, despite daily exercise! Don't be surprised when you have more hair loss after showering. Used organic shampoo and organic leave in conditioner (kenra). Shedding will continue every day, but will eventually lessen. Hair will be all over you, your floors, bed... I now dread the sight of loose hairs!!!! Last dose May 21st.
I am now a couple days shy of 11 weeks post final chemo. Hair is still shedding and I scour my scalp for new growth daily but am not yet finding it and worry it may not come. I'm not sure how this would work after cold capping but I guess I would only keep what's left after shedding finally stops, which may be another couple of months (gasp!).
Pros to cold capping- NO ONE KNOWS what's happening to me that I don't tell!!!!!!! This is hands down the most incredible thing because the way some people treat you when they find out can be soul crushing- They just don't know how to person with you anymore. And when it's all over, this is one way you can more quickly return to some semblance of normalcy. And it's also one way you get to rule your fate. You wanna shave your head when this is all over, it's your prerogative, but cancer didn't decide for you.
Cons: people that do know about what you're going through may not be as empathetic as you may need because they are not constantly reminded of your situation by your baldness. And also, as previously mentioned, hair...literally everywhere.
And after all of this, I still have lots of hair! I don't have any bald spots, but do have significant thinning on top. But it is completely hidden when I part my hair on the other side. I don't know this will work the same for you, but hell, it's worth a try!!!Also, the Rapunzel Project has good info about all the different capping companies on their website. Does your infusion center have either Paxman or Dignicap, or are you looking at renting caps
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thank RimRoc! It was really a great day
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Hughope1 port in and setting in my chemo now. Thank you for the encouraging words and talk to you soon
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RimRoc,
I am cold capping. First treatment is Aug 9th. i think you have the same treatment plan as I do (TC every 3 weeks, 4 rounds). I am at the UW Carbone Cancer Center in WI. They are affiated with Paxman. Its $500 for the cap and $200 per treatment. If you have 4 like I do, it's $1,300. Hair To Stay will help, but it's based on your income. I wasnt eligible. Our household is 4 people and gross income over $75,000. Just as an fyi
I started taking Sugar Bear Hair vitamins today in hopes it will help preserve my hair too. Sulfate free shampoo and conditioner (Ion brand). Ill do whatever I can, even if all of them help just a little bit, hopefully it will add up to alot. Staying VERY hopeful for this 💕AppyFan - Great info! Thank ypu for sharing.....it gives me a good idea on what to expect 💖
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Hughope1....hugs. Stay 💪 and keep us updated!
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Sunnychilly, Micyn, Rim roc appyfan- we share the same treatment 4 TC every 3 weeks.
I had my chemo class on Wednesday the 1-st.
Port placement is on aug 6!!
Chemo starts on Wednesday the 8-th of August!!!
I will post my meds for nausea , question😬Claritin I should take before or they would give me before infusion? Forgot to ask!
About NeulastA they will give me the patch on pro
Moonrabbit, do you have to drive to Boston for shot ? How about Neulasta patch?
Ladies who could not sleep at night- I was told to take Ativan half tablet for 2 nites after chemo to help me to sleep
Moth- thanks for sharing and supporting us. Who asked about hair ?
Rimrock did you ask about cold caps?
I will do my PXman caps it costs 1,300$ , other penguin caps are more expensive about 2,000$ or more, but Paxman is at the hospital and it’s like using theirs .
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Hi all, I have been out of the loop past few days. I plan on catching up here, to see how everyone is doing. I was so out of it past 2 days.. I did get the bone pain that goes along with Neulesta injection, despite taking claritin for days, but it was tolerable. What I had hard time with was stomach issues (the big D), and fever. After call to Onc RN, I did go to ER as temp was over 101°..given IV fluids. They don't believe any infections, thank goodness. Won't have culture results for few days. I actually feel Human today, so I'm glad I got checked out. Lost 6lbs in 2days. Dr believes this was all from Chemo SEs, not Neulesta. The staff @ER were so wonderful, compassionate. Big Kudos to them for all they do.
I see there are a few cold cappers( I did not ).I'm excited for all that are.
Hope all are doing well. Have GREAT weekend ! Big 🤗Cyn
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I talked to the local Cold Cap rep (maybe it is DigniCap, not sure). She said the cost is $400/month to rent the equipment (basically 6 caps in a cooler) and one adds dry ice the morning of treatment. About $75-$100 in shipping fees as well. So $1,200 to $1,300.
Change the caps every 20-30 min during treatment. The NP at the oncology practice said I would need someone with me to help with this. Extend treatment about 1 hour or so beyond infusion duration. The caps sit on WET HAIR. And after you go thru all this, the result is effective for about 70% of the users. And "effective" means less than a 50% hair loss...not exactly a sure pay-off for what sounds like some real discomfort and cost. I decided not to do it.
I have pretty short hair and I will just shave my head at first sign of hair loss. I'll go wig shopping pretty soon. Shouldn't be hard to find a wig that mimics my own look, so that is my plan. DH has "volunteered" to shave his head too. The funny thing is that he LIKES to shave his head and I tell him not to as it makes him look a lot older...So he's "happy" about this is an odd ball sort of way...kind of a weird silver lining. We laugh together.
God bless the motivated ladies who can handle sitting with a cold wet head for 5 or 6 hours!!!
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to MiCyn -- glad you're feeling human again...that gives hope to the rest of us!!!
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hi bostoniangal25: glad to hear that you have a plan! I did get the neulasta device for the 24 hour follow up shot. It worked as expected. I got some severe flushing during the medication injection but otherwise it was ok. I have been taking Ativan once before bed, but even though I had a great day yesterday, the headache hit me hard this morning so I’m going to try a couple of nights without it and see if I can be headache free.
I also experienced a possible injection site reaction? I have a hard bumpy, itchy area extending about 2.5 inches from the iv placement site (on my wrist) toward my elbow, about 1 inch wide. It appeared Wednesday night and I put some cortisone cream on it. It went away until yesterday night and appeared again. It’s still kind of there but I’m not touching it because I don’t want to aggravate it. Any thoughts?
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Hey does anyone know how to reset me age, I was born in 1958. LOL Not 2004. I am on this site as a 14 year old. Thought it would give you all a laugh. I had my first round of Chemo yesterday, so far so good. Have not been sick from either end yet. Knock on wood! Just did my last set of steroids, and first Zarxio shot. The only issues so far are those steroids, give me bad headaches. I did put on about 6 pounds before I started this ordeal. Was getting kind of worried about the side effects of weight lose. It may be different for the ones that have had surgery and then chemo. Because you were probably healthier then than after starting chemo. I hope the best for all of you, and hope someday we will be blazing the trails for others coming up behind us. Take care my friends in battle, hopefully we will all be looking back on this someday. xoxoxo
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Hi ladies,
I posted on the other thread but here it is again.
I did the first infusion yesterday. Got hubby and my dear friend to help out on the penguin caps. What a hectic day! Infusion went really smoothly and everyone was on schedule. But the cap is consistent hard work. I am so glad I got two people to help, can't imagine how to go through this with only one helper! 7 hours of cap cooling, changing and recooking is hard work! But I am so glad our little team did it! Hooray 😁
By the way, if you are considering penguin cap, you can always ask for the used ones, they cost $300 per month, much cheaper than the new ones. I did that and the used ones are just as good. So keep that in mind if cost is a hurdle.
Still on steroids so feeling mostly normal. Face glowing and less wrinkles, thanks to the steroids I guess 😊
Got the neulasta shot with onpro a few hours ago. I took Allegra starting yesterday to help with the bone pain according to my nurse. Haven't felt any yet, fingers crossed! The onpro is so much easier, didn't bother me at all and did its job 27 hours later. I am so glad to get this option!
Best luck to everyone. We can do this together!!
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Thanks SunnyChilly! I am scheduled for the 1st infusion on August 9th, and am using Penguin caps as well. I’m glad now that I asked a 2nd friend to help with the caps. Was also worried about Neulasta bone pain, glad to hear it’s going well for you. I’m also getting Onpro.
Did anyone else have crazy itching with the bandage on their port? I had mine put in yesterday, and it’s itchy with a blister in one spot. The way they slapped it on, it was really pulling on the skin of my neck. It eventually released some, but has irritated my skin. I don’t think it’s an allergic reaction because it’s not around the whole bandage, just the top where it was tight. Can’t wait to change the dressing tomorrow
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