Who is starting chemo in September 2016?

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  • CC2016
    CC2016 Member Posts: 107
    edited September 2016

    I thought I'd offer my experience this week, maybe it will inspire someone since I don't have many complaints! My port was placed last Friday, surgeon said the goal was that I would be able to forget about it between infusions. That has not been true! The swelling has gone down but my shoulder and neck is still sore and it has been uncomfortable to sleep. Besides the fact it's a visible lump under my skin! I took hydrocodone the first couple of days but then remembered an essential oil blend I made for my husband's bad back. Slept well for the first time that night after rubbing it in. I'm still using that rather than the meds. First AC infusion was Tuesday morning. Scared to death walking in but it was really not bad. My biggest fear was some horrible reaction to the drugs. The infusion center is not in a hospital, the doctor is there but I'm sure an ambulance would have to be called. No need. Wild imagination. I got to go home and see my kids. Prayers answered. Port access was no problem, freezing spray before the poke so didn't feel anything. I had put the lidocaine on but didn't mention it since I know the spray works really good ;). I had a bag of anti nausea, I know she said I would get steroids but don't know when that happened. Then started C and finished with the red A. Got a tad queasy a couple of times. The nurse called in scripts for prochlorpromazine and zofran. The P for mild to moderate nausea and Z if it gets worse. She recommended I pick it up and take it right away since it seems I have a "sensitive tummy". (I didn't a few weeks ago, until the nerves of chemo prep took over.) I did take 2 P on Tuesday and put on the Seabands. I was drowzy and queasy the rest of the afternoon but can't be sure how much was meds and how much was nerves. I actually ate a decent dinner-and got horribly nauseous and tired so went to bed super early. Wednesday was nothing to report-Seabands made my thumb muscles sore I think. I took them off that night and haven't had to put them back on yet. And thumbs are better now. Yesterday and today I've definitely been more tired than normal and my stomach has been making weird noises. Some D by that has been off and on for a few weeks now-nerves I think. A Culterelle has kept it under control so far. I've made some essential oil mixes for tummy/nausea and keep the Seabands with just in case but haven't needed it yet. My appetite has been good, not great, but definitely better than expected. Metal mouth has come and gone several times, saltwater rinse when it does just in case that's a sign of oncoming sores but nothing yet. I've heard neulasta is a possibility if levels drop, here's hoping I can hold off. I prefer to keep the meds as minimal as possible. Some of the stories y'all are telling scare the crap out of me so I'm glad of the lack of pill bottles I have right now! I've heard days 3-5 are supposed to be the worst so am holding out hope that was it. I've got big plans this weekend that I really want to make it through!

    GonnaBePoz - I'm praying you're community gathers round and takes care of you and your daughter. Exes and bosses are not what you need to stress over! I hope a secret admirer brings you groceries soon ;)

    Bagsharon- if the race has the "give up trucks" or whatever they're called I'd say go for it! As long as you can stop when you need to and you feel up to it at the starting line, why not? I started walking a couple miles most mornings just over a month ago now trying to prep. It's been harder this week but then the air has been crazy heavy humid. Can't be sure again if it's the chemo or not. I'm sure it's a factor but to what degree...?

    I hope everyone has a wonderful weekend full of rest and fun and healing and positive thoughts. A girl can dream..

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  • VLH
    VLH Member Posts: 1,258
    edited September 2016

    AngelaKS, I'm very sorry that you've felt so ill. Sending healing thoughts your way...

    Lyn

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  • AngelaKS
    AngelaKS Member Posts: 71
    edited September 2016

    Thank you all. I pray I am on the other side of all this. At least for now.

    D is still here and my stomach still hurts but I haven't gotten sick in awhile.

    Here's to a great weekend!

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  • misslil
    misslil Member Posts: 260
    edited September 2016

    AngelaKS, so sorry you are going through that. The worst day i had the first round with D issues, I was only able to manage drinking Ensure one or two mornings. It probably helped a little to get some nutrients in. My MO told me some people can take up to 20+ (!!) Imodium a day if the D is bad enough, that was pretty incredible to hear but it's a tough issue and I was shocked even with the bit I had, how weak if made me feel after a day or two.

    .

    Day 2 on round 2, ok so far. Got the Neulasta shot today. Waiting to see what SEs develop over the weekend and next week. At least the past week or so was pretty normal feeling. I guess this is all quite the rollercoaster. 

    Port still finicky this morning (dang) but ok to run IV fluids. I asked what would happen if they can't get it working for chemo regularly even after running their anticlotting agent and the other contortions..  There is apparently a scan that can try and image with contrast to see what got kinked up or out of position with the port. That might show if there's any way to manipulate the port into working better. Or there might be a recommendation to replace the port or not fix it and go to conventional IV instead.


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  • seq24
    seq24 Member Posts: 530
    edited September 2016

    Here's another steroid question. Has anyone experienced severe depression after coming off of them? I am depressed at a level I have never experienced before. It's starting to scare me and my family. I'm to the point that I feel like even after one treatment I absolutely cannot do this anymore. Ive been exhausted for the last 4 days and spend a lot of my time crying. The sheet I got with the prescription says depression and mood swings are a side effect of steroids. I thought I was going to be ok after getting through the first infusion last week with no side effects, but this is another story. I think a lot of it has to do with the fact that my days with hair on my head are numbered. I really admire all of you ladies who have been able to accept that as part of this journey. I can't seem to do that. Thoughts?

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  • BeachBabyK
    BeachBabyK Member Posts: 156
    edited September 2016

    Late to the party, but happy to be here. Started round #1 on 9/2, round #2 set for 9/23. Have a lot of reading to catch up on, but so thankful to have such a wonderful group as a resource.

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  • VLH
    VLH Member Posts: 1,258
    edited September 2016

    We know you don't want to be here, but welcome, BeachBabyK.

    Lyn

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  • Sr2295
    Sr2295 Member Posts: 34
    edited September 2016

    hi all - hope everyone is having a good night,

    I'm having some new se including some of the tummy trouble everyone has been describing. I'm working from home some times and was able to do a 45 minute Skype meeting during the day. I was pretty much done after that. Day 4 - well now 5 pretty much stinks.

    AngelaKS- hope you're doing better!

    Smilethruthepain - hope you're feeling some relief

    Welcome beach

    Sleep well!


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  • Bagsharon
    Bagsharon Member Posts: 200
    edited September 2016

    I'm sitting here in bed instead of being downtown participating in one of my favorite local races. I guess this qualifies as a side effect of chemo?

    Seq24, I don't know if this will be of any help to you but I found this young woman inspiring: https://www.youtube.com/watch?v=kCHVW-PuXDQ

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  • Leydi
    Leydi Member Posts: 146
    edited September 2016

    After second AC infusion

    The NP at the oncologist office confirmed that the SE after the subsequent infusions should follow a similar path as the first, with fatigue getting worse each time. I had my second AC treatment on Wednesday and have noticed a few differences for me.

    Treatment Wednesday, felt fine Thursday and worked the full day. Already planned on taking off Friday and felt worse (more like I was sick rather than just unwell) that day than the first round. However, I started feeling better by Friday evening. . .it took me until Saturday evening to start feeling better and my energy returning the first round. Constipation is worse and set in earlier this time, despite stool softeners.

    I held off on the Zofran this time until I felt the first nudges of nausea because I thought that was the likely culprit for constipation. Nope. It must be something they put in my IV. I've only taken two or three Zofran this time with no increase in nausea. I took it proactively 3 times a day the first round. With the NP approval, I have used a few Tums when my stomach felt a bit unhappy but not actually nauseous.

    Surprising to me, my hair is hanging in there so far, and this is Day 18 from first infusion. It is buzzed short (not shaved, my NP gave me the same advice as upthread - shaving can cause a painful bumpy rash). It is shedding some but no bald patches yet.

    So sorry for the ladies that are having sleep issues with the steroids. I don't have any to take at home and had my oncologist reduce the dose in the IV. I fall asleep by 8 or 9 pm and slept a solid 10 hours last night. I think this has helped tremendously with recovery afterwards. I've also been forcing myself to go out walking even when I don't feel like it. That is helping too!

    Tamoxifen

    I started taking tamoxifen concurrently with my chemo treatments. I've started feeling what I can only assume are hot flashes but they are very tolerable. I feel too warm for no reason but it passes within a few minutes. Fingers crossed that they don't get worse because I can totally live with these.

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  • Sam13
    Sam13 Member Posts: 52
    edited September 2016

    Good morning!

    It's day 11. Emily is doing well and continues to improve with a few exceptions. About 3 days ago she noticed she was experiencing burning urination. We went to the MO and they had her tested for a UTI (which came back positive). She is now on antibiotics for 3 days to clear that up. She's also developed an annoying runny nose, she's detected a bit of neuropathy in her fingertips, and still has the D (and some fatigue) intermittantly. Her taste is returning to normal and she is sleeping well. No shedding yet. She is in a very good mood this morning. We're headed to Raleigh this afternoon to look at wigs.

    Welcome to our new friends. Sorry you are going through this, but you are definitely in the right place for support/info.

    Lmencken - Thank you for your kind words. I could do nothing less. I figure I need to do everything I can to reduce Emily's stress levels so she can concentrate on getting better.

    seq24 - Emily hasn't experienced severe depression (or even cried), but from all the reading I've done about BC and treatment, this is such an individualized struggle. I read that one good way to fight bouts of depression is to keep yourself very busy. It seems it is during the quiet times, or when we are alone, we tend to focus on the what-ifs. That is such a dark place. Emily and I just try to focus on knowing she will get through this. All of you will. Any negative thinking is simply counterproductive. Losing one's hair is so traumatic. It is interesting how so much of our identity is tied to self-image. Don't worry, your hair will grow back. This is all temporary.

    Angela - Sorry to hear of your SEs. Hope you are feeling better today. Have your taste buds returned to normal?

    Smilethrupain - Ditto to you. Have you taken any Claritan for the bone pain? Emily started taking it before her first infusion and stopped taking it last night. That was one SE she was really hoping not to get.

    CC2016 - Emily is still gargling with Biotene & a baking soda/water rinse. So far, no mouth sores or thrush. She'll continue that all the way through treatment.

    Bagsharon - Laughed at your Milk of Magnesia story, glad it turned out ok. Emily does a lot of walking and works in the garden as much as possible. It helps with so many aspects of this process.

    MFalabella - ACS74 is right, take it one day at a time and focus on the good things in your life. Everyone is going to get through this.

    misslil - Hoping your port issues smooth out. I know they flushed out Emily's after her infusion, but now I'm wondering if she'll have to deal with something like that down the road.

    Lizbeth - You are a wealth of information. Keep it coming!

    Ware - Glad to hear your SEs have been minimal. I didn't know the compazine caused the brain-fog effect. Emily has a script for that, but hasn't had to use it, yay!

    GonnaBePoz - Emily has been drinking tons of water too. I really think that has kept her SEs to a minimum. Welcome again to the group.

    Sorry for this being a bit long, but I haven't been on for a while and this board moves fast!

    Wishing you all light SE's and that everyone enjoys the weekend!

    Keep thinking positive thoughts!!

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  • Leydi
    Leydi Member Posts: 146
    edited September 2016

    seq24 - Call your MO now about the depression. They need to know so they can help you. It could very well be a side effect of coming off the steroids. . .or, heaven knows, a common affliction among anyone going through cancer treatments. Hang in there. Even though my SE have been relatively modest so far, I still, during the worst of them, have feelings of not wanting to keep doing this. It is so hard when most of us felt FINE before diagnosis. We didn't start feeling bad until they start treating us. Let us know how you are doing.

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  • 70charger
    70charger Member Posts: 963
    edited September 2016

    Sam13 The annoying runny nose means she is losing her nose hair. Amazing how much those little suckers hold back. I would have to walk around with a tissue under my nose. Found this & thought some of u might benefit. Franimage

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  • LisbethS
    LisbethS Member Posts: 145
    edited September 2016

    Woke up this morning and found my post sitting here that I thought I posted last night, ugh, chemo brain.

    seq24, Oh my gosh, that sounds awful. Please please please, tell your MO and make sure she understands how bad you feel, you should not have to feel like that from a drug SE at a time like this.

    Now that you mention it, I did have weird emotional problems that might have been from the steroids, I was angry and depressed and wanted to just run away from everyone. I totally forgot about that. I guess my chemo brain made me forget. Part of it might have been my intense fear of starting chemo but I think a lot of it was from the steroids. Ugh, I was thinking the steroids just caused me acne and insomnia, totally forgot about the rest. And steroids have a long half-life so they take a long time to get out of your system.

    Are you taking compazine? I had a bad reaction to compazine years ago and now it's on my allergy meds list. I was in the ER for stomach flu dehydration and they gave me compazine and it gave me a panic attack which was so horrible, I would rather have had the vomiting back. It made me just want to die. I had never experienced a panic attack before and had no idea what was happening to me. My doctor told me she has seen this reaction before. Also, Zyrtec gives me horrible scary nightmares. I hate being on all these drugs to counteract chemo SEs only to get more SEs from the drugs. sigh.

    Ugh, now I'm feeling down remembering those bad times. I need to think of something positive, ummmm, I wore my halo wig out for the first time tonight. I tried a scarf with it but I'm just not a scarf girl so I wore a baseball cap. Felt weird wearing a baseball cap out to eat even though it was a VERY casual restaurant. I kept wanting to take the hat off to itch my head, luckily I remembered first. And the bangs kept riding up and I had to yank them down. Should have practieced a bit at home first I guess. Well that wasn't very up lifting, but that's all I got tonight, tomorrow is another day.

    Night everyone.

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  • Ware
    Ware Member Posts: 70
    edited September 2016

    Well.....today has been crappy...literally. Started out with a shower which resulted in a birds nest hair do that was one big dread lock. Trying to comb it out was ridiculous and was just not going to happen. I was home alone so had to call a friend to come and cut out my birds nest. So, short and very thin hair. My advise to everyone is get your hair cut short before it starts falling out cause if not its gonna be a mess. Then I get the D. Unexpectedly. Glad I was home alone 😳. Other than those two things feeling ok. Took some Imodium so I hope that resolves the issue.

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  • seq24
    seq24 Member Posts: 530
    edited September 2016

    Lisbeth-- I'm glad I'm not the only one who experienced that with the steroids! I knew feeling dizzy, shaky, disoriented and basically feeling like I was going crazy was all part of it. Never even thought about the depression and mood swings until I as sitting in a dark corner crying my eyes out last night and my husband looking at me like "what's your problem". I got out the drug information sheet that came with the prescription and it listed depression/mood swings as a serious side effect. It did not say how long it would last so I'm glad you said it sticks around for awhile. Now I know. I stopped the steroids on Monday. I started feeling the effects on Tuesday and Wednesday I felt the dizziness, etc and yesterday was bad as far as the depression. When I had my appointment on Thursday I mentioned how awful I felt and was told that it was not from the steroids, but from the chemo itself, but I could believe it was the steroids if I wanted. I believe it!

    I took Compazine too. Ended up feeling really dizzy and dopey from that too and all I did was sleep. I only took it the day after infusion because they told me to take it as a preventative. I never had nausea so I quit the next day. I was prescribed the scopolomine patches to put on the day before chemo and to leave on for 2 days following. I learned the other day that you should never have the patch an take Compazine at the same time because they are similar meds. So basically I was getting a double dose. No wonder I felt awful

    I was experimenting with my wigs this morning. Dont need them yet but just trying to get the feel of wearing them around the house when nobody is looking. I feel really awkward.

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  • Sam13
    Sam13 Member Posts: 52
    edited September 2016

    One of the wigs we picked up today. We both really like it!

    image

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  • MFalabella
    MFalabella Member Posts: 176
    edited September 2016

    Sam. Emilys wig looks great on her, I never would have guessed it to be a wig. My hair started to fall out on day 13 just as the docs told me. if her nose is runny that means it has already started.


    xoxoMichelle

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  • Ware
    Ware Member Posts: 70
    edited September 2016

    so natural looking. Would not have guessed wig. Wow. Thats awesome.

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  • Hahlyn
    Hahlyn Member Posts: 179
    edited September 2016

    Sam13- Emily looks beautiful...she and I have the same diagnosis ER-/PR- Her2+ so I follow you closely...My chemo starts Wednesday September 21. Enjoy the rest of your weekend.


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  • AngelaKS
    AngelaKS Member Posts: 71
    edited September 2016

    I too had a bad reaction to compazine and refused it when they offered a prescription for it. I went in for a migraine and it did take care of the headache but I felt so crazy, I'd rather have the headache. I wonder if I ended up so sick since I had to wait so long for anti nausea meds after the infusion?

    I would never have guessed it was a wig! I love it. I cut off my long hair so I'd kind of like a longer one but will see what I can afford.

    I hope that everyone is doing better and can get some rest and relax a bit.

    I am feeling much better but haven't really eaten anything yet. I am trying, but my stomach is so sore.

    xoxo thank you all for your support. It means the world to me.

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2016

    Welcome Beachbaby!!

    Sam -- gorgeous wig! Looks so natural!

    Hugs to all as you're navigating your chemo treatments.

    --The Mods

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  • Bcrohde
    Bcrohde Member Posts: 9
    edited September 2016

    wow that wig is amazing - beautiful! I went to a wig shop for a few hats today and man I was surprised at how expensive a few head covers were. The owner did feel badly that I was going thru chemo so gave me a $50 little beanie for $35. Sometimes the cancer card pays :) but still $35 for a head cover? I need to go online - I just wanted something on hand

    Is anyone's head really itchy? My hair has been shedding and feels very thin and icky but it's not falling out in clumps yet. I'm just curious how long I have...and am tempted to get a pixie tomorrow.

    I'm 9 days out from treatment and am feeling so much better. Walked 12,000 steps today and ate pretty well too. It's days like today that you tell yourself you can do this.

    Hope everyone is having a healing weekend.

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  • Ware
    Ware Member Posts: 70
    edited September 2016

    Bcrohde get your hair cut short before it starts to fall out. Trust me. I had a mess on my hands yesterday resulting in a friend (non hair prof) cutting my hair because of a tangly mess. It will start soon. 15 days after first infusion and I am now very very thin on top.

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  • Sam13
    Sam13 Member Posts: 52
    edited September 2016

    Our daughter sent this link this morning. You've probably read most of this before, but it is good dieting advice.

    http://www.webmd.com/cancer/common-cancers-16/lung...

    Hope you all are well this morning.

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  • Hahlyn
    Hahlyn Member Posts: 179
    edited September 2016

    Thanks Sam..hadn't seen this. Very much appreciated.

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  • BeachBabyK
    BeachBabyK Member Posts: 156
    edited September 2016

    That's exciting Sam! Looks great! I pick mine up on Wednesday and none too soon...there is hair everywhere! I am still not ready to cut it all off though. Mine started falling out on about day 13 or so. So glad I didn't wait to order my wig! Now, bring on the cooler weather and I'll be a happy camper!

    Mentally gearing up for round #2 on Friday, as long as the blood tests come out ok. A little anxious as to whether they will be better or worse than round #1. Still fighting a cold that I managed to get shortly after my first treatment (one of the joys of having a school-aged child).

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  • HopefulYogi
    HopefulYogi Member Posts: 44
    edited September 2016

    hi everyone 🙂

    Fairly new here. I am scheduled to start chemo on 9/30. Taxotere,carboplatin,Herceptin,Perjeta. Once every 3 wks - 6 doses total. I scheduled it on a Friday thinking I'd have the weekend to recover, but from what I've read on here, sounds like I may be feeling it even worse on Monday & Tuesday! Reading the side effects on here and how quickly they come on and how severe is really freaking me out!

    Getting my port put in on 9/22. Probably getting my hair cut shorter that night too.

    Freaking out about the hair loss too😧. I've always hated myself in any kind of a hat/scarf. I work with 5 year olds so I'm thinking I should definitely be proactive about the wig and be ready. Don't want to scare the youngins. I'm actually going to an appt out of town tomorrow that happens to have a wig shop nearby, so I plan to do some try-ons. A lil hesitant to buy one online.

    I've been learning about and experimenting with essential oils this past year. If anyone has tried any oil concoctions for your side effects, I would love to hear about it. I will share any of mine as I go along as well. Just read about the tea tree oil for nails . Do you Start that at same time as chemo or only if you notice changes in your nails?? Thanks

    Also curious if anyone goes to treatment alone - drives themselves?? I have been turning everyone down that has offered to go with me because I didn't want anyone to have to take off work and sit there with me for 5 hours. One friend would absolutely NOT listen to me and has already put in for the day off.( feeling loved 😊). But just wondering if it is realistic to drive myself???

    Thanks for reading. Big love to all of you that are currently suffering from these dreadful side effects. May you soon start feeling some relief.

    ~❤️

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  • Sr2295
    Sr2295 Member Posts: 34
    edited September 2016

    hi everyone!

    Been a bit of a rocky weekend for me, but I think I am feeling a bit better.

    Sam - amazing wig thank you for sharing! The info you share is really helpful. I follow you guys closely for all of your terrific info and support.

    Welcome helpfulyogi! Everyone reacts differently so it is hard to say how much support you will need on infusion days. I only had one so far and could have driven myself. The experience is pretty overwhelming so having someone with you is really helpful.

    Bcrohde- glad you're feeling better!

    AngelaKS glad to hear you're feeling a bit better too!

    Have a good night everyone!

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  • MFalabella
    MFalabella Member Posts: 176
    edited September 2016

    Hopefulyogi.


    Driving to and from is totally doable, my husband and best friend went with me the first time, and I felt fine that same day, didn't start feeling yucky til day 3 and 4 after. I have my second infusion this Friday, and will be going alone. Hubby has the only income in our home right now, so I told him not to come with, I found that the infusion center is a good place to read and nap lol. I started losing my hair on day 13 and now its mostly gone. I started losing body hair first, (wink) and then my head. I buzzed it the night before my first infusion, since I wanted that little bit of control. I will keep you in my thoughts, you will do fine.


    love and light,

    xoxoMichelle

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