Who is starting chemo in September 2016?
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Do you ever turn the corner?..I had.my first infusion of tchp on Wed 9/21. Day after I felt okay Friday I went to work for a few hours saturday Sunday and today I feel horrible. No appetite all I can do is lay down...no longer taking the zarxio shot my oncologist thinks I had a reaction..(was having heart palpitations)..I mustered up some strength to shower and laid right back down. I feel so useless I can't cook for my family can't do a load laundry im praying this gets better. Sorry for bringing out the wambulance just really having a tough go of it.
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Hahlyn! It will get better. I had almost the same calendar of side effects and by Thursday (6 days after my infusion) I was so depressed. Then Friday I felt a little bit better. And Saturday felt great (ok, not 100% but 75% which felt like 200% after the days before). Please be patient with yourself. I have my 2nd treatment on Friday and am dreading it but this time I've cleared my calendar for days 3-7 in case I need to lay low at home. My bff drove 10 hours to see me this weekend and while I was still in bed by 9 every night and I couldn't drink our favorite wine I did hang out and have fun. It will turn a corner!!
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Hahlyn - Totally agree with Bcrohde. You should feel better in a couple of days and progressively improve until you're back to your usual routine. By the time you do your next infusion, you should feel "normal". Emily has definitely regained her strength and is ready for her next one on Wednesday. Then the rollercoaster will start all over again. But just keep remembering; the end is in sight! Hope you feel better!
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Hello everyone! I hope this message finds everyone feeling well (or as well as to be expected) I haven't posted much here but want to become more active. You all have helped me so much already just reading your posts. I start chemo this Thursday or possibly next week depending on port placement. I'm hoping for next week since October 3rd is my one year anniversary, my husband and I were hoping to at least get away for dinner this weekend.
I will be getting TCH.. I had a bilateral mastectomy on September 1st but my MO recommended chemo anyway due to my being her-2 +. I'm so happy to have found this site and share experiences, it makes coping with this much easier. Don't get me wrong I am scared but it does take the edge off being able to hear others experiences!
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Welcome to a new week Ladies! I had round #2 on Fri (9/23) and still feeling pretty good. This one was only 5 hrs as compared to the almost 7 hrs for the 1st round. The Dr has not prescribed Neulasta for me yet, but I was speaking to the infusion nurse about it and for those of you that experience pain, she said there is a reduced dose alternative that you can ask for that may not hurt as much...just thought I'd pass that along.
HopefulYogi- I have my port on the left too. Be careful with the seat belt and you might want to get one of those cushions that you attach to the belt. Also, an ice pack helped a lot when I first got the port in.
seq24- I also refused to barely touch my hair in hope that some would stay longer, but alas it still falls out...and amazingly gets really tangled! I make sure to brush before I shower so that the shower isn't going to get clogged. I completely get where you are coming from. I am not a hat person and the wig I bought is very warm on my head and I'm just not comfortable with it yet. I have mostly been wearing baseball hats. I just signed up for one of the ACS classes and hope to get a "better" (more fitting?) wig that I will be comfortable wearing. But yes, "it'll grow back" it just great, but it seems like forever until it is even able to start growing back! BTW, for home I have been wearing caps that tie in back (like a doo-rag) that I found at Walmart for $2.50 ea. They are comfortable and breathe and cover my fuzzy mess.
Are any of you taking vitamins or even iron? I asked the nurse about it, but she referred me to the DR, and I figured I'll just ask when I see him next Monday.
Welcome JR74!
Here's to a good week!
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BeachBabyK: I was taking a multi-vitamin and a vitamin D, until my liver enzymes went wacky and the doctor said to stop all meds. I'm hoping it was the letrozole that I was on for a month prior, since that was no fun, anyway. They didn't mention any iron to take, even though I was on the edge of anemic.
JR74: I start on Thursday, also, unless you get delayed. I'm ready to get going already.
Different things have been dawning on me:
1. I wear reading glasses and always put them on top of my head when not in use. I guess I'll have to get a cord to hang them from my neck.
2. For the next 3 days, I will most likely feel as good as I'm going to feel for the next several months.
3. Also, what am I going to do for Thanksgiving this year? I usually host it and cook all the food. (My dad and brother come, and my kids all come home, so there's not a very good option to go to someone else's house.)
Went to a fabric store over the weekend and bought 2 knit fabrics to hopefully make a couple more wraps. One of the ones I bought is just a tube sewed together with one seam. The ends weren't even finished. I figure I can certainly do that, and the two fabrics together only cost around $6. But I also paid for it by listening to a couple of chemo stories since the lady behind the counter wanted to know what I was making. I didn't tell her it was for me, and she was very nice, but I still don't really want to hear stories everywhere I go. Which was why I thought about a wig, but I'm also a non-hat or anything person and don't think I can handle a wig.
Take care, everyone!
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BeachBaby, I'm sure it was a relief to have a shorter day of infusions. One of the few good things I can say about my diagnosis changing from HER2+ to triple negative is that my AC+T sessions will be shorter than the TCHP originally recommended. I bought three baseball caps today at Ross Dress for Less...black, taupe & navy. Wal-Mart might have been cheaper, but Ross is a much smaller store & I'm still trying to regain energy after my blasted infection hung on for over six weeks. I'll finish my oral antibiotics just in time for port surgery next week. :-p
I also got a dressier, warm hat for winter although my head gets hot easily so I don't know how much I'll wear that or a wig. That reminds me, I put a reminder on my calendar to see if the ACS volunteer who is supposed to be good with wigs is working tomorrow. I need to ask about those little protective caps since my skin is sensitive in general. Do they stay on well?
NotTheBoss, I don't typically put my glasses on my head, but wouldn't even have thought of the baldness being an issue for those who "perch" their glasses. The weird stuff related to cancer... Maybe bring up the topic of, "Who can fill in as host / hostess for Thanksgiving this year?" now so people can't use the excuse of not enough notice to step up?
I think I recall someone saying that wigs are more comfortable if one gets the hair scissored super short instead of buzz cutting or shaving the head, presumably because of the stubble. I scan a number of topics so don't recall where I saw that advice, but what have y'all done? I already have short hair, but not super short? I'd rather not address the hair at a salon in front of strangers since I might have a meltdown so asked my friend who used to be a dog groomer to do it (with extra disinfection of equipment, of course). Should she instead scissor? Blade size recommendations or take it down as close to the skin as possible without causing a burn?
Lyn
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Hello all!
I am so so sorry that I haven't been on lately. I started to try and read all that I have missed - but gave up on page 20 and just jumped to the end. Some of my personal questions below may be old - as I was writing them while reading the older posts - so apologies if you already answered. I have a long post below - so warning to any newbies. What I share below is SUPER RARE and I don't want anyone freaking out...but it is important to be aware too.
I had my first chemo on 9/14 - and all went well during it. Sucked/chewed on ice during it, but otherwise - just felt weird...couldn't put my finger on why/what it was, just felt weird. But we went and got soup after and visited a farmers market. Well...FALSE HOPE. Within 3 hours, I started feeling horrible. Now let me preface the rest of my story with the fact that when someone tells me I need to drink a lot of water - I DO. I normally drink 3-4 liters a day...so I just figured I had to double that for chemo. So after more than a gallon of water and some gatorade - it was about 4pm in the afternoon, and I was feeling really crappy. I tried to take a nap - but felt like my head was going to expode. I didn't really feel like i would throw up - but kept a bowl with me because I just didn't know what was wrong. I kept thinking - dang, this chemo is way harder than I thought it would be...I didn't think day 1 would have any bad reactions! Well - by 11pm...I couldn't walk. Literally - my legs buckled under me. I couldn't talk - literally I was BABBLING...and my whole body felt like I was exploding. My chest was tight, tingling...and my BFF finally said we had to go to the ER. So off we went. TURNS out - I had an extremely rare side effect of Hyponatremia. Sodium levels are supposed to be 135-145...and when I got to the ER my sodium was 117. I was already at risk for having a seizure, coma, or DEATH! Yikes! who knew! I was SO proactive and prepared to battle all of the SEs, that by drinking TOO much water - I flushed not only the red devil out, but all of my sodium too! They had to admit me - and I was in the hospital for 2 1/2 days on IV fluids of sodium and other electrolytes. Not a fun place to be dealing with days 1-3, especially because all of the home remedies were...at home! lol. Here's the bad thing. We actually CALLED the oncologist oncall too...and he told my BFF that what I was experiencing was normal and just tell her 'it will get better.' She was so pissed as she kept telling him - no you don't understand, her BP is wrong, her color is wrong, she can't communicate, etc. If we had listened to that on-call oncologist I could have been dead! So ladies - if you and/or your partners suspect ANYTHING is not normal, do not hesitate...go to the ER and play it safe.
Not sure I can decipher what was a chemo SE or the effects of getting over the hyponatremia. The ER wa such a blur - and I remember trying to talk, but the only things that would come out is 'baahbahbah.' It was freaking me out - because I wanted to say stuff - but couldn't. I am just glad they figured it out..and by Day 5 I was feeling pretty fine. In fact, I haven't had that many SEs (knock on wood). Some mouth sores, my vision definitely worsened, on Days 5-9 I had a racing/pounding heart/pulse, but still was able to work and exercise (by exercise - I just mean a walk around the block...lol), and then on Day 9 & 10 I experienced a weird throbbing/pulsing at the base of my spine. It didn't really hurt though. My MO is having me try salt pills for chemo#2 (this thurs, 9/29)...and wants me to not drink as much water. Sigh. At least I know what to look for if it happens again!
To those on Herceptin now: I don't get the Herceptin/Perjeta until after I am done with A/C (end of October), and then when I start the weekly Taxol.
misslil- I get the neulasta shot the day after my AC chemo (not sure if I continue once I get Taxol or not). Some folks have the pod that self-injects, but I am going in for the shot because I get an extra IV flush the day after. Are you Her2+? your signature says your are Her2-...if you are negative, you should not need Herceptin.
Lmencken - did you wind up shaving on day 11? I had my daughter cut all my hair off and try her hand at a hairstyle. She actually did pretty good - see pics below. But then when I went to get my wig, the stylist took my hair even shorter (also below). I just don't think I can shave the head - but we shall see what happens when my hair starts coming out. Right now I am on Day 13 and nothing has dropped yet!? I expect it any day. You are so sweet to keep asking on me. I did want to get on and update - but just couldn't until I felt better.
Sam13 and OceanSky - I actually got that same cookbook for free from my library, and another one by the same author. Very cool the toolkit of things!
Lisbeth - did your MO recommend the ovaries out? I am freaked out and have high ER and PR scores too - so was wondering the same thing about getting them out.
So other than my weird reaction (which doc said today that less than 1% of chemo patients get this..lucky me! He didn't even know how to treat it - as he has only had one other patient who had it but her numbers were 126 - much higher than mine), I feel very blessed to not have much else going on. I have felt considerably well from Day 6 on. Today is Day 13 - still have hair...but expect it to go any day now. Pictures below are of me/original hair..my fear at my daughter cutting off my hair...then the result! Not that bad! It definitely got me ready to not have any hair by taking it this short!
Then when I went to go pick up my wig on Friday (9/23) the wig lady took it even shorter (as I really didn't want long hair to fall out...). I think my daughter's cut looks better - but I wanted it as short as possible to be able to deal with fallout! Plus - I HATE my wig! ugh. That's a whole 'nother post! lol.
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Ohmigosh, Kdtheatre! I've periodically had problems with my sodium being too low. I have water by my side constantly so thought that I shouldn't go too crazy when people have commented on being well hydrated. Definitely too much of a good thing for you! Being unable to drink water because of surgeries is far more stressful for me than not being able to eat. I am diabetic, but my sister is the same way about water & her blood sugar has been fine until recently so I think the driving thirst must be related to our shared Fibromyalgia.
I think your daughter did a great job, but I like the second shorter 'do as well. I'm sorry about the wig. :-(
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Do we stay in this board even though we are moving on to October? Or do we continue posting here for our next 5 months? lol. I don't think I can handle too many more boards!
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I think people typically stick with their start date group, Kdtheatre. I've straddled multiple groups because I planned to start chemo in August, then got delayed to September because of a second surgery, then pushed back yet again due to a stubborn infection related to having my seroma drained.
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Wow crazy that you had that reaction. I am glad you are doing well otherwise.
Is anyone else having a problem with their hands peeling? I am putting on lotion like a crazy person but they keep peeling.
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KDtheater, oh so sorry. Being in the 1% sucks big time... I'm glad you are feeling better. I've had issues with sodium being too high (to cause blackouts) but never too low. Glad you had your bff to drive you to ER. You look good - not unhealthy in the pictures! Hope you have better time with other transfusions
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kdtheatre, re "misslil- I get the neulasta shot the day after my AC chemo (not sure if I continue once I get Taxol or not). Some folks have the pod that self-injects, but I am going in for the shot because I get an extra IV flush the day after. Are you Her2+? your signature says your are Her2-...if you are negative, you should not need Herceptin."
perhaps you have me mixed with someone else. My profile has ER+ PR- and HER2+, the latter based on a FISH test report. I don't recall a question on Neulasta, I am also getting it the day after treatment during clinic visit for follow-up fluids. Unless you were only reading my prior diagnosis from 2008, which was DCIS. I'm a two-timer into this process
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Hi Ladies!
A newbie here. I was diagnosed with IDC, Stage II. After getting second and third opinions, I had my mastectomy and lymph nodes removed in late July. I healed well after the surgery, although I still have some arm stiffness and pain. Now they are recommending AC x4 -Tx4, dose dense because of some positive lymph nodes. I am supposed to start the chemo on Wednesday. Needless to say, I am quite scared and worried about the treatment and all the side effects, especially the long term stuff. Can't eat, can't sleep, cant relax and I have not even started. I do not have any support system besides my husband and 2 teen kids, and I have not told anyone that I am going through this except for some close family members and a few friends who are all living in Europe. I tried looking for a local support group (I am in Boston area), but was not successful.
So, I went online and luckily, I found this forum. It is so great to meet all of you! It definitely feels less lonely....
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Hi again,
Still Balbina here...
I was given the option of IV infusion to the vein or to the port. For now, they told me I have good veins (I am quite skinny), and I probably do not need one. What would you advise me to do?
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Welcome, Balbina! I am new here as well, so I don't have much in the way of advice but this site is great and the ladies here are a wealth of information!
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HAhlyn, i feel for you and what you are going through! Just a few days ago I felt similar. My first infusion was om 9/19 and by Sunday I wasn't sure I was going to improve. But I think I've finally turned a corner (more manageable SE) and returned to the land of the living. The thing that has helped me is to expect very little of myself but have very small goals each day. I had friends stock the freezer and ate that food when I felt like eating ( my tastebuds have died). So if you have friends or family who want to help, now is a good time for them to cook for you, do your laundry, clean your house so you can attend to the most important job of caring for you.
Good luck on Wednesday Balbina. I'm different from you in that I told a lot of people and their support has been incredibly helpful through my first round. I have no family locally and my closest friends were out of the country last week on vacation, but I have been touched at how other people step in to provide support. I just gave them a way to help me. It has been hard to accept the help of course because I'm not accustomed to it but it feels wonderful if/when there are dark moments.
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I already posted some of this, but for anyone wanting to hear my experience with Taxotere, Cytoxan, and Neulasta...
My first chemo treatment was Thursday, September 15. Felt pretty good, except for some bone pain, until two days later Saturday. It hit me hard. I felt like I had a terrible case of the flu. My temp quickly hit almost 102, so we headed to the ER. The young doctor didn't know what to do. He even asked me what I wanted to do. The doctors there didn't know what was causing my fever so they wanted to keep an eye on me. My hospital stay consisted of testing for strep, pneumonia, and flu. They did more bloodwork. On the days I was in the hospital, my fever spiked in the afternoons around 3:00 or 4:00. I wanted to get up and walk around, but the doctor said she didn't want me exposed to the other patients' illnesses, so I was stuck in that room. Come to find out, the fever was just a SE of the Neulasta, but there were no oncologists to confirm that until my 4th day in. When they told me I was going to be discharged, I had lower back pain that lasted throughout the next day. Hydrocodone helped that. The bone pain has been my worst SE. Thank goodness I started taking the Claritin a few days before treatment. I've been weak on some days and have been going to work. Friday night was my 30-year class reunion. I had my hair done and looked awesome, but once I got to the reunion, I broke out in a hot flash. My hair and face were drenched in sweat. Embarrassing. Yesterday, I noticed small clumps of hair coming out. Even more this morning. Trying to brace myself for the hair loss. I have mixed emotions about this because my hair is definitely my best feature, but I have TONS of it, which is very time consuming. I'm somewhat looking forward to the day that I don't have to spend time and money washing and fixing my hair. Like someone else said, I'm trying to find the silver lining. My wig is in a box in the closet. I've been trying to prepare my 11-year old daughter. She wants me to dye it pink before it all falls out. Hope all is well with you guys. I so appreciate all of you sharing your stories. Your positive attitudes inspire me.
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crappy morning...my daughter now has a virus to go along with the strep throat she got this weekend ...The cat knocked over my coffee...My hair began shedding...Chemo #2 was postponed because of low WBC count ...pity party whoop whoop!!! And it's not even noon, ugh I'm about to hit the ibuprofen for the headache that has been growing all morning now.
So anyone got any miracle home remedies for raising WBC?
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MissLil - so sorry! I didn't see the lower receptors...and I was trying to catch up so I most likely did mix you up with someone else. Sorry about that!
Haven't heard from my NP yet, but got my blood results from yesterday (prior to chemo #2 on thursday) and my LDH (Lactate Dehydrogenase) is seemingly higher than it should be. A quick search online didn't help either (and too scared to keep looking - see below). Is this normal for anyone else?
My LDH - 339 IU/L (standard range <250 IU/L)
A high LD in the blood may indicate that treatment for cancer (e.g., chemotherapy) has not been successful. A high level is predictive of a poorer outlook for survival for those with cancer. With some chronic and progressive conditions, moderately elevated LD blood levels may persist. Low and normal levels of LD do not usually indicate a problem. Low levels are sometimes seen when someone ingests large amounts of ascorbic acid (vitamin C).
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CC I hope your day gets better xo
Kdtheatre - I do not even see that on my blood work results from my infusion day. I am sorry, I hope you are able to speak to someone about that soon. xoxo
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KDTheater, cute haircut!
Today was to be my third infusion but my neutrophil count was 519, so they gave me the Neupogon shot. My chemo is weekly for 12 weeks. Anyone else struggling with the low neutrophil count?
Odd, I got my hair cut really short before I started but I haven't lost any yet. Am NOT washing it as usual, but just using a light dry shampoo. Am sure it will go soon enough.
Best!
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Finally caught up on this thread...
See lots of people are having to take Neulasta and Neupogon. Mine was for low Neutrophils, very low at 519
Beebs2704 I was told to take L-Glutamine for bone pain. It's an amino acid in powder form. Am mixing 2 and a half teaspoons with water 3 times a day. It has helped a bit. Also Zyrtec or one of the newer antihistimines was also recommended. Aleve... I'm also taking Tramadol, but even with all that I'm struggling with pain.
Imecken I would get started on that denial for Neulasta. Hard to believe you were denied!
Ware Did you mention the house to your M.O.? How long did you live in the house? That's an odd coincidence for sure.
Also, someone mentioned a cookbook??? Can't seem to find out who posted on it or what the cookbook was.
Best..
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Here you go OceanSky:
The Cancer-Fighting Kitchen: Nourishing, Big-Flavor Recipes for Cancer Treatment and Recovery
Available at Amazon for $20.0 -
KDtheater - I didn't see that in my initial bloodwork. Will look in the next one.
Had a crappy day - found a tiny lump in my armpit. Same side as MX. I was checking to see how much the lymphatic massage has mitigated the cording in my arm and found a beady lump. Freaked out big time. Had an appointment with a nurse about integrative therapy same building as MO, emailed her. She saw me briefly, did a check, said looks like either a lymph node or a result of cording, don't worry. Later in the day, saw the lymphatic massage therapist, she said - never seen anything like this in 20yrs, had nothing to do with cording. So freak out a little more. I'm thinking, if it's a lymph node or whatever that might go away with massage or time, or even if it's a malignant tumor ( felt same as the tumor I found just smaller) and it gets smaller or goes away with chemo, I still want to know what it is. Since I was at the hosptal anyway,went to see the nurse in my surgeon's offic. She was like - it feels benign, but let's get an ultrasound. Turns out it's either a cyst in the ski or an inflamed hair follicle - but benign nonetheless.thank god. In addition to that, have been shedding bunches and clumps. Afraid if I wash my hair there will be only a few strands left . Hanging on to last shreds of present normalcy for a couple of days longer.
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CC2016, good grief! Some days, it just doesn't pay to get up. I hope tomorrow is lots better for you.
Yikes, Smilethrupain! That must have been so scary. I'm glad that you could get an ultrasound quickly so you didn't have to fret about it for days.
Lyn
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Hello everyone. I found out today I will be getting my port next Monday (oct 3) not sure what day chemo will start but I'm sure it will be next week some time also.
The best part of my day was finding out I'm BRCA negative..
Hope everyone is having a good evening
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I am getting so much knowledge, comfort and support by reading what everyone is sharing on these boards! But I have to say that I find it very hard to respond specifically to the original poster of a comment when I am catching up on so many posts at one time. Is it me? Am I not using this site correctly or am I just so used to Facebook where we comment directly under each post? I forget who said what about what by the time I get thru reading them all. Not to mention, I keep hitting a button at the bottom of this screen on my iPad and changing everything into Spanish! Lol
My anxiety is through the roof as my first treatment day is nearing ( Friday)! Headache all day, haven't slept well in many nights even with Ambien! I think I'm o.d.ing on Internet. Reading about BC and side effects, online window shopping for wigs & head coverings. Literally driving myself over the edge of sanity! I SHOULD be prepping meals ahead and doing some hardcore cleaning
Oceansky---Regarding glutamine powder... My dr suggested it for neuropathy , interesting to hear it may also help with pain.
Kdtheatre-- wow! So glad you are on the other side of that now! How scary- good thing your friend got you to the ER. Hoping your future treatments are much easier in you. Your daughter did a great job with your hair.
Beebs - asking for and accepting help is another thing that I'm going to have learn how to do. I am a stubborn Taurus.
Beachbaby - dr told me to take multivitamin w/iron, vitamin D, B6 & B12.
Good luck to everyone starting treatment this week - seemed like a lot were. Stay positive and strong!
~❤️
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HopefulYogi, Hang tight. Don't let your anxiety mess with your head too much and try and keep your mind from running away. Stubborn is a good thing, I bet you're going to do well. Smiles.
I had breast cancer (IDC) one year and 7 months prior to getting dx with a recurrence a few months ago. I had a mastectomy the 'first time' but this is my first experience with chemo.
Good to know that L-Glutamine also helps with neuropathy. I have it from a condition having nothing to do with chemo so that's good to know. But yes, it does help with bone pain from chemo. Ask your MO about how he/she recommends using it.
Also learned I was low in B-12 and B-6 from all this blood work so am supplementing with that as well as Vit D-3.
Sam, many thanks for the cookbook link! Am a big believer in eating healthy and we love to cook so it's a win-win. It got good reviews and I could see a few of the recipes online. Looks great.
Best...
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