Starting Chemo April 2016
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CJSHARMA - that's wonderful news, I am very pleased for you. Imagine the chemo working already, so it was well worth it so far.
I got a bit anxious today. I sort of felt mild palpitations in my heart and I have had these on and off over the weekend, so I think this is what made me turn back from my walk today, although I had done 20 mins. on the treadmill before I went out. I rang the nurse to find out if I could stop taking Motillium (Domerid) as when I read up on the side effects of these it said it can effect the rhythm of the heart in some people. This is only an anti nausea medication so it won't do any harm not to take it as I have Valoid I can take. She didn't get back to me but I have decided myself to stop taking it now, so I will see if there is a difference. I am sure she will ring me back later on. I cut back on the mouthwash today, in that I am not taking as big a mouthful and it is working out better. I was filling the cap of the bottle with the mouth wash but today I am only half filling it.
You are definitely a model patient Christine and you have reaped the rewards.
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Hi all,
One day of chemo down yesterday- 5 to go (well sort of - 5 of the bad one's anyway)! It was a very long day at 6.5 hours, but went very well. Feeling great today (probably from the steroids). Will how it goes when I stop taking them tonight. Part of my treatment is Pertuzumab which I understands causes severe Montezuma's revenge in 70+%. I think I'm more afraid of that than the hair loss! Tons of energy today, went wig shopping and found a great one. Not sure if I'll go blonde or brunette, but I like it and think it looks pretty natural.
Anxiously awaiting the SE's to kick in. Hopefully they're minimal - fingers crossed!
Thanks to all of you ahead of me who have posting your experience. It's incredibly helpful to read how you're all doing. Keep it up and I'll do my best to do the same.
Michele
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PRD - LOVE that wig! I honestly thought you were posting a "goodbye to my hair" picture. It looks great. Good luck with the runs. The rest of us seem to be stopped up. Such fun, eh? Thinking of you! Glad you did so well your first day! My new wig arrives tomorrow - just in time for my hair to fall out.
Numb - probably a good idea to drop that med. Let us know if you feel better. That's why the give us many meds - we have the ability to find what works for us.
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PDRCHICK - great that you are feeling so well, and yes that wig is absolutely adorable, so natural.
CJSHARMA - just googled the medication I was blaming on my heart palpitations "Domerid" and found a big report on it saying they can cause cardiac arrest. I nearly had a heart attack when I read that report. My nurse still didn't call me back, but I have now stopped taking this med and hope I will have no more of these palpitations. Lucky I read the leaflet in the box before I took any more of them. I guess this doesn't happen to everyone who takes them but it certainly happened to me. Not the better of it.
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Numb - Oh! That's scary!! I'm glad you caught it and didn't just brush it off as a quirk. Great job at listening to your body!
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I'm anxiously awaiting my first post chemo blood panel results. I probably won't have them until later tonight, but I'm so curious to see if my WBC is looking decent.
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Numb - I am popping in from the March 2016 group and just wanted to let you know that it is different for everyone. I am on AC and have not found the chemo part that bad but suffer more from the Nuelasta shot. There are others that the Neulasta does not affect. You will not know until you get there but just know that this board is a great place to share and get ideas. Wishing you the best!
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Looks like I'm in this club. I start April 19. No clue on chemotherapy types yet- I need to log into MyChart. I haven't even met the oncologist yet!!! I do that right before. Because of my triple negative status, they want to get me rolling.
I didn't read the whole thread. Do you all have ports
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Welcome Twaz! So sorry you have to join us! Please let us know if you have any questions. We're here to hold your hand, and walk with you through this crap. I have a port - so much easier and saves your veins. Installation is easy. Just kind of weird.
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Thanks Christine, I am having a bad day today. I was fine this morning and then this Domerid medication had me up in a heap. I know it is just me and this med and not the chemo med that put me out of sorts. I am sure I will be fine tomorrow. I also got a stomach upset from the Senokot in that I was constipated and then it all started happening after I took it and wouldn't stop. So not a good day.
786TEX - Thanks for that, I just got a bit upset about the med I was taking Domerid but I was fine with everything else. I was doing grand up to today. Tomorrow will be a better day. I am glad I do not have to get the Nuelasta shot as it seems to knock a lot of people out of sorts, although good for the blood.
TWAZ - Welcome to the group. No, I don't have a port, but I am from Ireland and we don't do ports here unless a person requests one. Most people here have one it seems.
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I m checking in after my first day after chemo. Like pdr....my day was long since we had the same regimen. It was crazy long and hoping next one shortens up. Today I felt great and even shopped and had a full in my expanders. Waiting for my big crash when I m off steroids tomorrow!
Cjsharma....sounds like you are responding amazingly well! That has to feel so great! U r watching that chemo kill those jerk cancer cells before your eyes!!!
Numb....that drug sounds scary. We don't need anything else freaking us out. Our minds do that well enough!
'Twas....I fought my port. I did not want to get one! Now I feel like It was the very best thing I could have done. The nurse who was with me during mine...came in to show me his. He has had his in for six years after his lymphoma battle. He said it's a security blanket. I was so tired of getting poked and getting bruised. I can't imagine getting my infusion thru my veins now. But it might b more difficult in another country, so that may be a factor. Do whatever works best...but I m grateful to have mine now:)
Hope everyone else is doing well:
Jeri Ann
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Twas - Same here on the port. I didn't want it either, but so glad I did. Especially since my triple positive status has me getting Herceptin for a year. Definitely recommend it, had my first infusion yesterday and it was painless and very smooth. Good luck next week!
Numb - Great job on being your own advocate and doing your own due diligence. Stay strong - we are thankful you pulled us all together here. We're here for you! Hang in there, it's tough but worth it to know you are conquering this disease!
CJSharma - Good luck on the WBC counts. Seriously hoping they are looking good!
Jeri Ann - thanks for being my partner in crime here - not many of us on here with this TCHP regimen. Thanks for keeping me posted on your progress!
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CJ - so good to hear about your shrinkage! It must feel good to have physical proof that this is working. Good luck on your blood work.
Numb - have you heard back yet? I guess if you have a back up anti-nauseant you could be okay dropping one until you hear for sure.
Hi Twaz - I have a port. Got it last Wednesday. The procedure was pretty easy - felt weird for a couple of days but I barely notice it now. Used it for the first time Monday. So much better than getting stuck all the time! They sprayed freezy spray and I didn't feel a thing. Had blood drawn and all my chemo meds super easy.
So I felt a little blah yesterday afternoon - not exactly nauseous or achy - just blah. I took a couple of doses of Compazine but bumped up to Zofran at bedtime and that seemed to do the trick. Woke up (several times!) to go to the bathroom (hydrate, hydrate,hydrate!) and I felt fine. Got my Neulasta shot this morning - no issues. Took the Claritin before and will take one tomorrow. Am regretting that I totally forgot to take stool softeners!
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Hi everyone!
I'm so glad to hear all the reports, especially that Lenny is shrinking!
I feel a bit overwhelmed getting everything ready to start cold capping and chemo Thursday morning. I was a wreck at work today with anxiety but for some reason, I would not take the Lorazepam. Tomorrow if I feel the same, I will. I procrastinated getting everything ordered for the cold caps so today was a stress with not being able to control my husband who was running the errands! I dashed home from work and we had a Skype training and then, then
...well I got a phone call from my daughter and she is pregnant! This will be our first and she is only about three weeks so its very early. So I am almost dizzy from the emotional swing!
I apologize for not having time to respond in detail, but I am reading and supporting everyone.
Annie
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Pdchick
Your wig looks awesome! I'm doing 6 rounds of TCH, they denied the Perjeeta. I start Thursday so we can count down together.
A
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anniekaja11- my insurance denied the Perjeta too the first time around. My MO is a bulldog though and got on the phone with doctors from the insurance co (cigna) and got it approved. I think perjeta is relatively newly 'considered' for use in non-metastatic, non-recurrent cases. But with my Her2+ and grade 3 diagnosis (like yours) she was able to make it happen. It's a pricey drug at something like $4,500 a dose, so I totally get the insurance company pushing back, but it's probably worth asking your doctor to appeal the case like mine did. It was a pretty fast turnaround. Good luck on Thursday!!! Will be thinking of you!
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Thanks everyone for the concern. I rang the nurse again today, 8.33 a.m. here now, and I have to go up to the hospital for an ECG, so please God they will sort this out today. She said I could be kept in so don't worry if you don't see me around for a few days.
Had a terrible night going to the loo, after the Senokot, so not doing too well but hoping to get sorted out today.
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Anniekajala11,
I did the exact same thing putting off on cold capping. It does come together tho. Just know that it will be stressful during that day....and then when you are done you need peace and quiet for the rest of the night to thaw your head:) will be thinking of you Thursday! Pdr and i are on Mondays and you are on Thursdays.....my insurance never pushed back on my drug regimen....I am not sure why....blue cross blue shield?
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Numb - oh no! Hugs! I'm glad they are taking good care of you, but which they would have done it yesterday. Hope the digestive issues sort themselves out. Maybe Senokot is too much - consider just using a stool softener instead of a laxative next round?
Jgab - Glad you are feeling good! Hope you stay that way!!
PDR - Thank you for the well wishes on the BC
NJR - It does feel good. My tumor is so big it's easy to feel, so it makes it easy to tell if it's going down. Sorry you had a blah day. Funny how they have us all on different meds and different cycles. I get chemo of Thursday. Friday - Sunday I take Zofran and Dexcadron daily and have Compazine as a back up. Oh word of advice - take the stool softener now.
Annie - Congratulations on being a soon to be Grandma!! That is so exciting!! I think this whole thing is overwhelming. It's almost here. One more day. I'll be in your pocket the whole way! I'll make sure I'm on line if you need to chat. I'd tell you to stay cool, but with the cold caps… (sorry bad joke).
Blood panel - spot on normal. Basically very close to the one right before chemo, so that's good!
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Pdrchick - sounds like you have a great MO. They will appeal for me but I need to wait to see if my MO will push for it. Thanks for the note. So glad you are doing well.
Thanks Jgab - I think once Round 1 is done, we'll feel a lot better. Just trying to manage my stress which also keeps my hubby more cool headed. I hope the drips work out so that I can Cold Cap during the targeted therapy drip - stupid spell check keeps changing the name to perception....:)
Numb - Oh no, well I'm glad that are being cautious with you...steroids, anxiety and that medication...all can stir the heart. I hope its all calmed down by now.
CJ - HA! So glad that you are feeling good. I hope our Numb gets running well today.
Well I'm off soon to work, had a good Ambien night and don't really have much to stress about today. I start my first dose of the steroid today and I am hoping it doesn't make me crazy in my head like prednisone did. I'm looking forward to some slower days with some time off. I have an acupuncture appointment at 5 pm today which is supposed to be really helpful for chemo and relaxing. My hubby is on dry ice duty so when we get home tonight we'll pack the cold caps up. He's running errands today while I work to get supplies.
PS: I like Smooth Move tea for constipation. Drink it before you got to bed, its gentle and works great, for me anyway.
Annie
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Well Ive been admitted to hospital and may be here a few days. I got a fever so the on call onc told me to go to emergency. My whit blood counts are very low. Rock bottom low they said. So I'm getting antibiotics and a different version of the shots some of you routinely get (I forget name)
On another note, I definitely think someone should start up a FB group. This site is rather awkward for chats.
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Hey ladies, just thought i'd share something fun. I went to a free seminar this am that was sponsored by the American Cancer Society. In case you haven't heard about it, it's called "Look Good, Feel Better". They seem to offer them all over the country (well for those of us in the US, anyway!). They show you all sorts of tips on how to use make up as your skin and hair changes, how to fill in eyebrows, fun head wraps that are not pricey (like one you can make out of an old tee shirt). They even had some donated wigs available. You get a free goody bag of quality stuff to take home too. I attached a pic of what was in mine.
I know that fighting this disease and getting ourselves healthy is the most important thing here, but this is certainly worth checking out if you have one near you! The website is www.lookgoodfeelbetter.org
Uniboob and Numb (and anyone else missed that's in a hard spot right now) - Keep this tucked away for when for when you're feeling better!
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I've created a Facebook page - if you want to PM me your email addresses I can add everyone. I'll call it the April Chemosabes.
I had to have one friend join, so I included my friend Julie who has been through this - I can delete her once we get rolling. Annie - have a nice relaxing day today and drink lots of water.
I'll be thinking of you tomorrow!Uniboob - I'm so sorry you were admitted to the hospital. Are you not getting the Nuelasta shots? Maybe this will be a good reason to campaign for them. Thinking of you.
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Numb - wishing you luck on your test. And I agree with CJ about going to a stool softener instead of laxative.
And yes CJ - I took the stool softener immediately! Yay on your blood counts. I guess I was the opposite - they told me to do Compazine with Zofran for a backup - I'm going to ask it I can just do the Zofran since I wasn't a fan of how the Compazine made me feel.
Annie - Such exciting news about a grandbaby! Between a house and a grandbaby you have a lot of good among the whirlwind!
Uniboob - sorry to hear about your hospitalization. I guess it's the Neulasta shot that you don't get? Will they automatically give you something after your next treatment now since they know your white blood cells bottom out?
So I guess day 3 is the day you lose taste! My yogurt tasted weird and cereal basically had no taste. I'm also getting tired of all the drinking! Anyone told a guideline on how long to drink, drink, drink? I'm not a big drinker normally, so this is just getting annoying! Also didn't get much sleep (thanks, steroid). But other than that I've been doing good. Feeling a little draggy today - just assuming it's lack of sleep.
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NJR - Glad you are doing well! I get a bit more tired for about a week, then I feel better. I feel normal today, of course, I go in tomorrow for my next round. The water is to help flush the poisons of chemo out of your system, so, unfortunately, I would continue higher than average water intake for your entire treatment, but maybe just the 60-70 oz for the first week, and lower a bit from there.
I have temporarily made the Facebook group closed by not secret. You can find it here: https://www.facebook.com/groups/AprilChemosabes/ You have to ask to be invited. Once everyone is in, I'll reset it to private.
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pdrchick - I am going to sign up! Thanks!
Numb and Uniboob....sorry you guys are not doing well. I hope this is the only dip for you guys. I just wiped my desk down with Lysol and am laying low the rest of the week heeding your warnings. Walking outside now that the weather is breaking, I have a health club membership but will only use that on week 3 when my immune system is up to par - nah, not even then if the weather isn't crap (Ohio so we still get snow, rain and chill all through April sometimes).
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I start this Friday and am also triple negative on the left. I had a double mastectomy in February. I will get TC, no port, 4 rounds three weeks apart.
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Welcome VSB - sorry you had to join us, but we're glad you're here.
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Thanks, my daughter went through this a year ago and had 16 weeks of ACT and Perjeta. I feel really lucky that I only have to do four rounds every three weeks. I'm a little anxious about side effects but I don't anticipate too many. Dr. said older woman seem to have less side effects from neulasta than younger women. For once age is on my side. I'm planning on returning to work Monday after my first chemo on Friday, hope that works out.
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VSB - I worked 3 days so far this week and working tomorrow (had TC no port 1st round done of 4 last Thursday). Granted I work 6 - 7 hours max but then I get to come home to my second job, my six year old, house hubby and dog. It's not a lot of fun but doable. Good luck!
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