Has anyone started a Dec 2011 group?

seacretgardn

Keepnfaith I'm sorry you are going through this, glad you're through the first, and hoping your next days are as uneventful with side effects.



I know what you mean about Christmas, but I'm sure your family will be happy spending time together, however it need be.



I wish you all the best.



Laura

markat

Woohoo my brain MRI came back clear- no mets! I've never been so happy to just have a headache.

3monstmama

Hi all,



well my mother had her first chemo on Thursday after shunt placement. For her, Saturday-Sunday-Monday were pretty bad as far as SEs--lots of general body pain and a wretched headache. But by tuesday when she had a cardiologist appt, she seemed to be feeling better and was even down to eat lunch and dinner in her dining hall.



At our end the problem was that we couldn't get her to do all the stuff the doctors told her to do to feel better. So she wasn't drinking enough, she wasn't trying to walk (just lying on her bed), she wasn't taking the OTC pain meds (just 1 pill in am and 6 hours later complaining of pain but not taking meds). Oh and she refused to take the anti-nausea meds because she "doesn't have any nausea' and decide the one pill she took was responsible for the headache. Sigh. It is hard to be getting such good information from all of you and having her reject everything just because its coming from me. And really that is what she does. On Monday she finally called her nurse about the body pain and the nurse told her the pain was from chemo (which DH & I had been telling her all weekend) and announced to me "Mary says its from chemo." oh.



Anyrate, we are hoping she will feel up to coming over for Christmas. At some point she wants to go pick-out a wig but thats not going to happen until after the holidays. Her 2d chemo is not until after the new year.



one day at a time, right ladies?

keepnfaith

Seacret:

Thanks for the encouragement and kind words.

Markat:

Great news! Am very happy for you! 

3mon:

I understand your frustrations with your Mom. My mother wound up in ICU for over a month because she doesn't like to follow directions either. This was earlier this year. She has a lot of health problems and gets bullheaded sometimes. My sister is her main caregiver and was at her wits ends. I made the out of state trip to be with my mother and give emotional support for my sister. During that visit I hurt my mother's feelings, which I hated, but I had to get my point across about her being more serious about her care. Now she's trying to give me the same lecture. (ha) Only I'm doing everything I can to listen to doctors and advice on this board. I want to keep this as easy on myself as I can. Hang in there and hopefully she'll start listening to you and realizing you only want what is best for her.

Blessings to all for a good Christmas, however we may have to celebrate it.  

naan1004

Wanted to share a sweet moment.  My 6yr old daughter slipped me a love note before she went to bed, it read, "From Heaven to mom I hope you get well and more happy living."  So sweet, so glad I had daughters, they can be so sweet.

Keepnfaith, make sure to keep taking the anti-nausea meds for about the first week to make sure days 3-4 slide by with little to no SE's.

keepnfaith

Thanks for the advice naan!

and thanks for sharing your precious moment. 

Mardibra

naan - so so sweet!

Peacock

It's so great to check into this thread and hear how it's going for all of you. I have tx2 (A/C) on Friday and I've been running around like a maniac these last couple of good days. Now I'm in bed exhausted, remembering that I need to rest.

 One of the hospital ladies sent my whole med file yesterday for my records. I have pieces of it, but the whole package of it sent me into anxiety land. Me? A huge packet with all that info. Me? With all these technical terms behind her name. As nice as those people are it's sad that they know me only or primarily as a cancer patient.

 I'm a little grouchy. I have been overwhelmed by ENVY! I want to plan a trip, buy tix for a show, whatever....but it's nearly impossible to do so. We can't plan well with this disease. (And it's expensive!)

mamabee

I'm day 6 TX1 and I finally felt close to normal most of the day. I'd only taken claritin for the neulasta for 2 days and I paid for it yesterday - the bone pain was awful - so I took another claritin last night before bed and feel much better today. After doing mostly normal things all day, when I got home 5:30 tonight I was beat - my butt will be firmly glued to the couch the rest of the night.

 Rachel - so sorry to hear of your fever. I was thinking that once we got passed the first week after TX, it was all downhill - guess I was wrong. Hope you are feeling better soon!

 Markat - yay for the clean MRI! best feeling ever....

keepnfaith - congrats on finishing your first treatment! for me day 3 was the worst - next time I'm going to make sure that I eat more (try to keep something in stomach) and not be shy about taking my anti-nausea meds. I never felt like I was going to get sick, but I was definitely unsettled and the meds made me feel much better.

 3monstmama - hugs to you & your mom - hope she can celebrate Christmas with you

 appreciate all the hair/wig stories - New Year's Eve is my shaving day - new year, new me! 

  

seacretgardn

Market what wonderful news!



Naan she sounds adorable. I miss my daughters being little.



Mamabee, glad to hear you felt so well 6 days out.



Getting nervous, AC tx2 tomorrow.



Have a good night all.

naan1004

Secret, make sure you take your nausea meds not as needed, but every cycle whether it's 4-6hrs at the get go, so u won't get sick like i did.

seacretgardn

Thanks Naan, last time I waited, thought thats what the NP said. Next day the nurse said take everything you have, alternating them.



I'm a little sad, today was a really good day. Yesterday and today I actually saw and felt like myself.

Those i spoke to agreed. Told me how worried they were last week.



Asked my daughter to please keep reminding me the fog will lift again.



Again, thank you to all of you.

evyl78

Secret we arer on the same schedule I do my second tx tomorrow!  Will be thinking of you!  For those with little ones the first time I let my then 5 yr old help daddy cut my hair and then it kinda fell out after I sat for hours brushing it!  This time my now 9 yr old and me made a day of itwe went and got our hair cut I got a cute style but once the tingling started I had one of my best friend come over and shave it!  My 4 old son and 9yr old knew and came and watched when they wanted.  

 I am so happy for no mets Market!!

Rachel hope the fever is down!

My vision bothers me but know that I think of each and everyone of you and Wish you all a Merry Christmas! 
Much love

~Evy~

Im going to try to upload a new avatar showing my shaved head

seacretgardn

Eve I will be thinking of you. Hoping your SEs are minimal.



Your family sounds like a joy and a wonderful support.



Have you spoken to the onc regarding Your vision? I did have some blurring, but attributed it to my general feeling of fogginess and fuzziness. My already dry eyes are worse, I'm constantly putting in drops.



Feel well Eny, keep us posted.



To anyone else who has tx today, minimal SEs! Everyone else, a great day!

naan1004

Secret and Evy, those could be SE from nausea meds, ask onc

markat

Thanks ladies! I'm so relieved! It was really freaking me out.



Naan that was such a sweet moment.



Evy that's awesome that you could share that with them. My 7 year old could probably handle it (she thinks my hair falling out is hilarious) but my 6 year old is very sensitive.



Glad to see some of you are feeling better! Good luck to those getting TX today, you are in my thoughts.

naan1004

Ok, time to vent, my DH is so annoying, he nags at me about what to eat and what not to eat, then he goes and eats what I can't eat right in front of me, ughhhhhhhhhhhh, so annoying!  Why r there so much diet restrictions!!!

markat

Naan what are your restrictions? Is it because of nausea or are you doing something else?



I'm feeling down today...tired and grumpy. My husband is like walking through this in a fog.

Mardibra

Different SE's for me this round.  Nausea wasnt an issue after tx #1 but it certainly has been after tx #2!  Taking Zofran and Compazine.  Im exactly one week post #2 and hoping that tomorrow I will start feeling normal again.  Longing for a feel good Christmas.  Another weird set of SE's....my right eye wont stop watering and the soles of my feet are burning.  Anyone else?

seacretgardn

Hi ladies, AC tx 2 today. Feeling lousy. I think the steroids really do me in but am afraid to reduce them since they are supposed to help prevent nausea. I don't know how any of you drive, I get blurry while still in the chair.



I think I had nurse Rachet today. When she said she doesn't usually work on Thursdays all I can say is good! Not fresh but sloppy. Sloppy can be dangerous. When she was getting ready to do the adriamycin injection, she got special purple gloves, as she walked towards me, I saw the gloves graze the top of the infectious disease disposal. She threw them on the uncovered table and walked away. I "accidentally knocked them on the floor so she would have to get a new pair, and be ready to use them.



Didn't feel a thing last time they accessed my port. Did this time. When she pulled it out blood was coming out pretty quickly and she grabbed an alcohol wipe and a wad of gauze. I said what if this doesn't stop. Her reply " it should"', and handed me another wad of unwrapped gauze. Great. I'm already seeing a bruise too. I'm wondering if can make a request for an onc nurse next time.



To add insult to injury, my period has made an appearance. I'm 53, spotted in Sep but otherwise was done for a year. Cramps like I don't remember having since I was a kid.



Mardibra, terrible that the nausea lasted so long. I haven't had the SEs you are experiencing, but I already have very dry eyes, and that has gotten worse. I feel dehydrated all the time.



The onc wants me to take an anti anxiety med. Says I am the one causing my quickened heart rate from worrying. While that sounds reasonable, I don't want to deal with yet another drug and it's side effects.



Does anyone have any advice on what they take to sleep in spite of the steroids?



Finally I hope any one else who went today or is going tomorrow has minimal SEs!



Hugs, Laura

shera

I've read though about half of this thread and just wanted to stop and say hello. (its a very long thread --- but informative in many ways)

I was diagnosed on Nov 28 and had chemo port inserted yesterday --- will be starting chemo next week sometime I expect. I'm scheduled to meet and learn about all the drugs I'll be getting on Dec 27th. 

 I'm ER+ PR+ HER2-

If you are the same, can you share what drugs you're being given? So much to read and learn about... I'd like to zero in on the drugs I can expect and the side effects.  I will know my node involvement on Tuesday -- which might effect the treatment some. Tumor too big to avoid chemo either way... so moved forward with port before knowing node involvement. 

 Seems like a great support network here. Yes, I'm also terrified of chemo. Finding some good pre-chemo info on this forum though. Many thanks!!! 

rachelvk

I hope everyone's SEs are quieting down a bit. I'm sorry to hear that some of you are having more trouble with the second round. Just when we think we're getting the hang of it....

naan - I love what you shared about your daughter's comment. She must be a doll. And I am curious also what restrictions you have. Other than being told to avoid raw veggies and fruits w/o peels when my wbc is low, I've been green lighted for just about everything. And I've thrown some pretty specific questions at my onc as I read things here just to double check.

seacretgardn - There is nothing worse than a sloppy or careless nurse. Especially in the infusion room, they should be extra careful and try to look like they know what they're doing!

3montsmama - This is a rough ride you and your family are on. I hope your mother can start listening more and understanding that you're a part of her healing team.

I saw my onc today and my bloodwork says I'm out of the woods - neutriphils above 6! The onc said I did everything I was supposed to, and suggested that 100.5 doesn't have to mean another ER trip, but that I should be watchful. I'm so glad I got out of that rut. But last night I started getting horrible heartburn - I already have reflux, so I'm not sure if this is made worse by the chemo or the antibiotics. Unfortunately I had forgotten my Prilosec and my boyfriend had nothing around to help except regular milk, and I couldn't sleep to begin with. But I'm back home with my Prilosec and Tums now, so hopefully I'll be able to bring that under control.

I hope everyone will be able to celebrate at least some way during the holidays. I may not make it to my sister's Chanukah party because my nephew is sick, and my boyfriend is surveying his relatives to make sure I can come along to their Christmas celebrations without much concern. I'll try to get some celebrating in. 

keepnfaith

shande,

I was terrified of my first chemo too. It really wasn't so bad. I had a wonderful nurse, she talked me through each step, answered my questions and took into consideration I was very nervous. You and I have a similiar diagnoses. They are starting me on Adriamycin and Cytoxan for 4 treatments and then Taxol for 4 treatments. They also gave me a steriod and emend with my infusions. Plus I get the nuelasta shot the day after my treatment to help my white blood count.

My first treatment was yesterday. I had some burning sensation in my throat but drank lots of water and ate ice chips. Really helped keep it down. I got heartburn too. Taking zantac for it and it really helps. I began my nausea meds about 6 hours after my chemo and been taking them regularly since. I have some achiness in my legs but am actually doing pretty good. Today I got the shot. Again some achiness, some dizziness if I try to move too fast. Felt a little more tired today, but all in all everything has been tolerable. I hope that helps you some. Of course we all react differently but I wanted you to know it hasn't been as bad as I had imagined.

Oh, something I wasn't expecting, I lost all my coloring. Kind of shocked me when I looked in the mirror and I was completely white. I have also had some bumps pop up around my mouth, looks like pimples which I've read a few other ladies have had. Again, nothing too terrible.

Great group of women here. This is definitely the place for support. Wishing you the best! 

darlam

Shande; welcome. Sorry you have to be here, but glad to share.

Markat; doing the happy dance for good test results

To all those on our second round; hoping for minimal SE's and the ability to enjoy at least some of the holiday. Had discussion with MO about the severity of my nausea last time. Will be taking the Zofran starting now, not waiting till nausea starts. Taking PO Emend today and for next two days to spread effects out more. Starting ginger supplements. Finally, he gave me tiny doses of liquid Haldol to take if and when nausea starts. Says it's an old tried and true that worked; they just don't do it much anymore because there's so much new fancy stuff...which obviously is not working for me. He also said women with very bad nausea during pregnancies (check) history of motion sickness (check) history of post operative vomiting (check) and narcotic/sedative hypersensitivity (check) are at very high risk for extreme nausea with chemo. Well, imagine that! So he totally believes me (thaaaaat's nice!) and it's a matter of playing around till we hopefully find the combo that makes this tolerable. Y'ok! Hoping that's sooner rather than later. I already informed my family that this is my ONE AND ONLY trip down chemo lane no matter what happens in the future UNLESS the nausea can be better managed. Other than that, it's sure not fun, but survivable. The four days of dry heaves if I even sat up last round should not be visited upon any living being. Hoping for better days this time. 

rachelvk

darlam - I'm sorry the nausea has hit you so badly. I hope the new approach takes the edge off. One more suggestion - I used the 'sea-bands' that people can use for seasickness. I can't say how much that helped, since I was taken some of the other drugs, but I've heard it can help this type of nausea as well. Good luck.

Shande - I'm triple negative, so I'm probably on a different regimen than you'll get, but there may be some cross-over. So many of the drugs have similar SEs anyway. But ask away and you'll get good advice here.

keepnfaith - The loss of color is really shocking. That's part of the reason I wound up in the ER the first time - getting faint, and then seeing no color at all in my lips. Seems as though it's either that, or I'm flushed bright red.

keepnfaith

darlam,

I am so sorry about the horrible nausea. I certainly hope they can find a way to make it more manageable for you. I wouldn't wish it on anyone and it's been my biggest worry with the chemo. Think I rather carry headaches than deal with a sick stomach. My heart certainly goes out to you. 

darlam

This is a copy of this morning's FB post. Friends there seemed to enjoy it; hope you ladies do too. I was a little goofy from steriod insomnia at 5 AM!

So it's the night before chemo; and all through the house, I'm the only one stirring; I surely hope there's no mouse. 

The stockings are draped on the high chair (don't ask why) with care, in hopes that St. Nicholas will wait till I'm no longer a bear. 

Sara is nestled all snug on the couch; her bedroom's too hot, and I've lost my perch. I'm not yet wearing a kerchief, I've still got my hair. Brent has a cold, and he's snoring upstairs. 

Now on my cell phone arose such a clatter; I sprang from my bed to see what was the matter. I flew to the bathroom and turned on the light. I then found my glasses; without them, NO sight!

There's (Thank God) no snow here, it's raining again. It's almost morning as I look out below. 

Now what to my wondering eyes should appear..but a patient in labor who's texting....OH DEAR.

From the sound of her voice, contractions so quick; I knew in a moment, it must be legit. 

She paused then to breathe, and she timed them again. Five minutes apart for two hours they came. She's anxious for baby; it's the third call tonight. So dash away, dash away, dash away all. To L&D to determine if s/he is coming today. So up to the hospital this couple they flew. With suitcase and car seat, and baby's daddy too.

And then in a twinkling, I heard on the phone, the labor nurse calling to keep me informed. I took a quick shower and drove across town, I'll admit the patient, then be chemo bound. 

I am dressed in comfy clothes, prepared for "the chair." A blouse that unbuttons to reach my port...there. We look like peddlers dragging all this stuff in. We must take our coolers to eat our lunch there. Another brings the cold caps to try and save hair. 

My eyes, how they water; my cheeks are so fat. Compliments of chemo/steroids, oh, how I love that! My mouth gets so dry and my lips need some jelly. We won't even mention my expanding belly!

I can't help but laugh, in spite of myself...for this is a season and this too shall pass. God's in control, I have nothing to dread. No more complaints, let's get down to work. 

I've shopped and wrapped a few presents. I mailed all the cards and packages. There's a tiny tree twinkling and one batch of sugar cookies baked with grandchildren just for fun. It's Christmas this year on a much smaller scale. Somehow that's ok, it's just this one. We've had time to focus on those we hold dear, and the real reason we have this season each year. 

I might not be able to join in on Sunday, but please know I love and am thankful for both "real-time" and online friends. Family is more precious than ever, it seems. 

Merry Christmas to all, and to all a good day! 

Peacock

Seacret, I don't know if your dr is suggesting a longer-term med or "as needed." I am taking a daily, which helps, but Ativan has been my salvation during some of these days. It releases a little tension AND is an anti-nausea med.

 I too worry about too much medicine, but i have decided to roll with it and detox when it's all over (at a spa, I hope!). I hope everyone feels okay heading into the weekend.

 I have tx2 today, AC, and I'm dreading it. But they have wifi and I got my hands on an Ipad with streaming Netflix, so I'm hopeful that old Frasier reruns will be a good distraction. 

markat

Darlam very cute and creative!



Seacret I second the ativan. Definitely chills you out and helps you sleep. Are you taking the steroids before noon?



Mardi that stinks that the se's are different this time. My eyes are very dry.



Rachel glad you are feeling better.



Well my head is shaved. I wonder how long it will be before the rest of the stubble falls out. Boy is it cold!

seacretgardn

Thank you Peacock. My concern with longer term ( welbutrin) is that so many of the side effects are the same as I'm experiencing, rapid pulse, shallow breathing. Maybe I'll ask for the Ativan first.



Much luck today Peacock, hoping you have an easier time this one.



Markat, yes but it was prescribed to be taken twice a day 9 & 6. Yours is once?



Darlam love the FB post. Lots of creative energy, ESP for 5 am!