November 2014 Starting Chemo Crew

today was my first treatment. first i had blood work and of course they had problem finding the hole from the port,they finally got it. then went to see the doctor, and then had to do my treatments.

Hi All! I too started my first chemo on 11/20/14 and had my Neulasta shot on 11/21/14. I have to do 4 treatments 21 days apart. I was good, except for a funny taste in my mouth until Saturday. Saturday and Sunday I was extremely tired, bad muscle pain in my hips and not able to eat alot I never got nausea's. I did take the Claritan but the muscle pain has been bad. I'm on day 6 and starting to feel normal except for the muscle pain and funny taste in my mouth.

My chemo is T/C. Anyone know if the next treatment will effect me worse or the same or be better?

Good morning all! Today is Day 3 for me and all is still going pretty well. I haven't felt nausea but if I'm a little dizzy or off balance I will take a compazine. I usually take 1 before bed and 1 in morning and so far so good. Brushing with Biotene toothpaste and using that same mouth rinse as well as the salt/baking soda combo. Seems ok for now. Still do have a mild headache for a few days. Went for neulasta shot yesterday and that went fine. Took Claritan on day 1 and plan to take it every day throughout. I know it doesn't work for everyone but gotta try! Still drinking 100 oz of water. My appetite is normal so far.

Dhustedde , I'm on TC too. I'm not sure how next round will go. Wonder that myself. I think it's a combo of now you know what to expect so can prepare for your reactions, but a bit of a cumulative effect too. Hope it goes well!

Hope everyone is hanging in there with minimal SEs and can try to enjoy Thanksgiving. I know it's been really rough for some. Praying for us all ladies!

Hi Marcela. That sounds like my day on Sunday, except I ended up in the emergency room. I was all alone in the house and got really lightheaded in the shower. Got out and had to lay on the floor for a few minutes. After that, walked to the bedroom to call my husband and passed out. Gave myself a nice bruise/contusion on my forehead and chin in the process! The combination of the hot steamy shower and the dehydration was what did it. Stay hydrated Ladies!

I haven't had the really bad taste yet. But some Ladies talk about drinking Gatorade or adding Gatorade powder to water to make it easier to drink. (?)

Been slowly feeling better. Thanks everyone for your well wishes. Going to my Sister-in-Law's for Thanksgiving. Hoping to have some kind of appetite by then! Have a great Holiday weekend everyone!

Hi everyone,

I'm fascinated at all the stories of other people besides me having some funky, unexplainable medical issues for the year leading up to the tumour discovery only to have them as mysteriously disappear after the removal. Weird and interesting - there's obviously a lot our bodies are telling us we have yet to interpret correctly.

I think I had a small episode of chemo brain yesterday. I had just come in from outside and was hot so tossed all my headgear aside. I have lost about 90% of my hair and now I look like I have my Great Uncle Johnnie's infamous comb-over. I tried to shave the remaining bits off but the electric razor hurt a bit and so I'm scared to go back and try. It keeps falling so I figure the rest will drop eventually - I can wait.

Anyways, a few minutes after I got changed into something comfortable the doorbell rang and I had the door fully open to the UPS guy and his trainee when I realized I'd not put a cap back on my head. Not only that, but because I'd been hot and sweaty when I came in, I knew what was left of my hair was probably sticking straight up like a sad little mowhawk. ARGHGH! I froze for a second and then figured it was too late to slam the door so I just acted all casual, like, yeah - this is how I always answer the door! The guy wasn't sure it was me and had to ask (I've had him come before) to make sure but other than that to his great credit he didn't blink an eye to what must have been quite an alarming sight. I actually had to pay for delivery so shut the door to get my wallet. My cap was sitting right there and I considered for a second putting it on, but then I figured it was too late anyways and would just make my discomfort even more obvious. I could hear them talking through the closed door and froze again trying to hear what they were saying, but he was just explaining to the trainee how to process a VIsa payment.

When I came back out, we finished the transaction and he even stayed for another minute or so making small-talk and not betraying even a little that anything was amiss.

When I got back inside I just laughed and laughed. I've been so careful up to now not to offend anyone's sensibilities with my mostly bald head, but really, people won't die if they see it. And some can obviously be quite cool about it.

Ironically, they were delivering two new cloche hats I'd ordered online. And not a moment too soon apparently!

Lucy, that is funny. But, maybe if more of us didn't "hide" our cancer, it would be a better reminder to others to keep checking. Everyone is different in their values and what they can emotionally handle, I don't mean to offend anyone. I do have foobs and I'm still waiting for my wig.

Tally, you are soooo worth it

amylsp – I`m so sorry you had to go through that! It was scary enough just the "blackout" but actually passing out must have been terrible!

TallyLassie – You are having exactly the same drugs as I am so yes, it was probably from dehydration…most of my SE have been from that according to my MO… I`m trying to drink fresh watermelon juice now, since it is mostly water. I try not to drink industrialized beverages (Gatorade, soda, bottled iced tea…this kind of stuff) mostly to avoid the high sodium intake, but since water has been barely tolerable I think I'll have to rethink that. And yes, Perjeta is SUPER expensive. My insurance is NOT covering it so far because apparently coverage is only approved for metastatic cancer witch is not my case…I'm already in touch with a lawyer to see what my family and I can do about changing their decision…so there is this extra stress on top of everything else. I`m gonna do it no matter what costs, we are ALL worth it!!!!!!!!!!!

lucyshoe – Loved your story and your sense of humor but I agree, the UPS guy is probably used to being surprised by peoples looks when opening the door! But seriously, wouldn't it be great if bald was the new "normal"? No worrying about taking care of hair, styling, or anything like that… and when you want to look good, just put on a wig and voila! I would LOVE that!

I'm not feeling anything yet this time, but the other time I had chemo I had serious chemo brain and didn't even realize it until it was already fading away… Like the day of my last chemo infusion for example… a lot of my friends went to my house afterwards to celebrate that I was done with treatment, but I barely remember who was there, what we talked about and what happened… a few weeks later was when I realized this! Another thing.. I would wake up and be sure that it was a Wednesday for example, think about what stuff I had to do, plan my day in my head, only to realize a few minutes later that it was not Wednesday, it was Thursday already… very confusing. But for me it was mostly memory stuff. And it went away like 3 months after I stopped taking the drugs.

Also one other thing that I haven't mentioned before… On the six months of the previous chemo I gained 15kg…that's about 30lbs… the dexamethasone really builds up an appetite and I just couldn't stop eating… but since I started taking the drugs again I feel like I lost a little bit of weight. So one more difference that I felt from the ACTH to the TCHP.

Marcella. So sorry to here about the reoccurance. So soon. How do they find it again?. Just curious. You were on the same plan I am currently on which is pretty aggressive chemotherapy. What the heck.your story frightens me. You are strong. 

Anyone experience extreme soreness in upper chest and upper back when laying down??

Thanks for starting this group...I started 4 dose dense rounds of AC on November 10th. Just had my second dose this Monday....so far I seem to being doing better with less side effects from the second round...slight bone pain from neulasta shot but still better than first go round. Halfway done with AC then on to Taxol--not sure if that will be 4 dose dense or once every 12 weeks mixed with carbo platin. Hair loss started this week so I took control and shaved it which was empowering....the anxiety about losing it seems to have been worse than it actually being gone...

Wore my wig first the first time all day yesterday...it was hot....think I'll only wear it for work.

My biggest side effect right now is the inability to sleep more than 4-5 hours even though I am tired...anyone have any tricks helping them with sleeping consistently at night. Walking helps with side effects and lots of water has been helping....still have metal taste in mouth and decrease appetite but overall feel better than first round. Port is feeling better too...I had port placement and first chemo on same day.

For those in the NoVa area are you finding support groups helpful? I met a survivor through this discussion board and she has been an amazing support to me and happens to live in the area. Right now the one on one dialog works best for me...but I am contemplating supports groups. Thoughts?

Thanks for letting me chime in.....

SCVA, when I was first diagnosed 14 years ago, I received a lot of support from the Young Survival Coalition. I was even their regional coordinator for a few years. I met a lot of nice women whom I'm still friends with today. However, now that I'm 54, I'm too old for that group so I've only been on these message boards. Where in VA do you live? I'm in Springfield. I know there's a Life with Cancer program in Fairfax and I signed up for one of their Look Good, Feel Better programs on the 8th

Hi all Happy Thanksgiving! Well I slept better than thought. Up every 2 hours but at least it's sleep right? Going to hopefully enjoy some turkey. Big "D" has come for visit. Pain is tolerable with 800mg ibuprofen. I agree...missing my restful nights. I also wonder if I made correct choice in doing lumpectomy vs BMX. Skip this chemo just! Enjoy your family time ladies and be thankful we have each others support! I am!! :-)

Hi all: I just replied to a post and realized that I got bumped to the December 2014 Chemo group! Not sure how that happened, but I'm back with November. Guess it all blends together. I'm grateful to be feeling pretty good this Thanksgiving. Infusion #2 on Monday, so I'm taking care of business while I still have some energy and a brain.

I'm going to attempt a glass of champagne at my sister's this afternoon for Thanksgiving. I love wine (I know, a risk factor) but have had no taste whatsoever for it since I started chemo nearly 3 weeks ago. That is a blessing, as I need to stay healthy and hydrated.

Marcela, you did exactly what I would have done were I you. Thank God for your cautious doctor. Good luck with this round and your unfortunate legal battle. I would mortgage my house to get the Perjeta. The only way I could be approved for it in the US was to get it pre-surgery, so that was an easy decision.

Many of you have already had surgery, and I'm meeting with a plastic surgeon soon to go over possibilities for the spring when I get mine. I'm 58, so appearance not as important to me. Based on what I'm seeing here, I'm thinking of bilateral mastectomy even though one side is OK. I want a matched set and I don't want to worry about any more surprises. The expanders are kinda scary, though. I suppose I'll check in on surgery discussion boards at a later date.

I'm thankful for this forum and for all of you as we go through this together. Happy Thanksgiving!

Happy Turkey day all. Someone asked for suggestions to add to water. I normally would put half of a lemon, sliced, in my water bottle. It now is too acidic for me so I've switched to berries. I don't care for plain water either.

My appetite came back a little the last few days. But I still vomit frequently. I try not to take the nausea meds unless I need them. They give me headaches, and constipate me even worse. My hair is sore, but isn't falling out yet. My cuticles are sore too, but nothing bad. I did have this burning electric like pain on my left side pretty bad since my infusion. It's starting to let up. I wonder if it's the chemo doing it's job.

Monday I go to be harpooned for hopefully the last time (biopsy it's for the clinical trial). Also having another MRI, joy. Then the next Monday is chemo round 2, electric boogaloo....

Does anyone know about sharing cups? Is it safe? My toddler is always trying to get my water and I try to keep him away.

I'd like to be in the fb group, but aparently can't be found, someone add me pls, Dawn Meyer, with a background of me and my dad, me in a Bruins shirt.

Astarte,

I had that thought, but about giving the dog my leftovers. My kids are a few years older. If they tell us to close the lid to flush, its probably not a good idea to share cups either. But, like Leslie said, it's probably more for our own benefit to not expose ourselves to the kids' germs any more than we have to.