Starting Chemo March 2015

wpmoon

rest up Katy!

ksusan

That's great, Katy.

avmom

Argh. I spoke too soon. Since shortly after my last post, I have been alternating between being chilled, then hot, and my tummy has been very unsettled, with frequent, liquid diarrhea (sorry if tmi). It feels different from previous nausea. Has anyone out there had this combination? At this point, I'm taking off my socks and ditching my blanket, then piling everything back on, about every fifteen to twenty minutes, with a trip to the bathroom every other cycle. I've checked my temp, and it is just below normal, which is about right for me.

Any suggestions would be welcome. I'm trying to hydrate, but my tummy isn't liking water, and I think I'm losing ground with the big D.

Thanks.

Jackbirdie

oh Avmom- so sorry!

I can suggest sucking on ice chips or bits of Popsicle to try to stay hydrated. Ginger is very helpful. I put a little raw ginger in when I juice, but also maybe sips of fresh mint leaves in hot water as a fresh tea with a bit of powdered ginger. Sips of ginger ale, though I'm not sure it has real ginger in it, it helps ease my gut and D.

And you may not get immediate relief, but anything probiotic, even just a spoonful or two of good yoghurt here and there, may help slowly balance your gut out.

For the hot flashes, stay layered so you can change your coverage easily, and have some ice packs ready. I like them on the back of my neck to cool down.

I wish I was there to help you feel better. 😥😪

Carrie37

Imodium did the trick for me with the D. Hydrating is hard for me too. Seems that everything I complain about...the answer is to drink water. according to MO and Onco nurse. I have the temperature issues too. Annoying! Hot. Cold. Hot. Cold. Ugh

Carrie37

I thought I postedh is here but put it on weekly Taxol thread. Maybe you all have some input:

I hope everyone is well and experiencing minimal side effects. Quick question about port access. For about the last 3-4 treatments the nurses have had trouble getting my blood from my port. They have had to do two flushes to "get it going." Today she did three flushes and then a flush of some med (starts with an H) and let me sit for 5 minutes. My blood looked foamy. It was odd to me but the nurse said it happens and not to worry. She said it just gets "cruddy" sometimes. Anyone else know anything about this? I know she said don't worry but that is just silly!

Trvler

I get the hot flashes, especially on the first couple of days after spa, but I have found that not getting overheated in the first place can help. Easier said than done but I get cold, put on something warm and then have the hot flash.

ninjamary

avmom - that almost sounds like the flu. I'm a huge gatorade fan for liquids. I've just started back drinking and tolerating water. Dunkin Donuts ice tea (sweet) is another go to drink for me. Good luck. I hate the big-D

molly1976

Carrie, the med is probably Heparin, a blood thinner. That's what they inject into our port after each treatment to prevent clotting.

Jackbirdie

Carrie- it's funny you should mention about the port. I had to have it flushed twice today before it would work. And twice, during past infusions, my blood started backing up and going backwards down the IV line towards the poison! I freaked of course, but the nurses were nonplussed. I think these things just happen. A port is a mechanical, man made device. Shit will, whenever possible, happen.

ninjamary

Just had #6. Halfway done with Taxol! Yea. Met a nice girl in the chair next to me. We complained about ports (mine failed AGAIN) and discussed cancer etc. It's so nice to talk to someone who "gets it" in person. She was diagnosed Christmas Eve. Ugh. I love it that she hates the infusion room as much as I do. The hospital folk thinks it's such a cheery place to be. Sigh.

I have an xray tomorrow to view my port. They got it working after I was getting Taxol through my veins. At least they are willing to access via my arm if the port fails again. I must of said 100x.."I'm on a schedule here" "I'm not getting a new port" and "I have nice veins" lol.

They must have asked my birthday about 10x today also. The friend of the lady next to me said at one point "even I know her birthday". It's like they think a pod person came in while they were getting my meds (think Invasion of the Body Snatchers - classic!). And why do I have to say my birthday when I'm getting benadryl in a pill? Silly.

avmom

thanks, all. I'm continuing to hydrate as best I can, and I have Imodium so I'll try that. Unfortunately, I finished up the last of my yogurt yesterday, and I'm not confident that I could make it to the store and back without an "accident", so the probiotics will have to wait.

Italychick

No Taxotere or Carboplatin for me today. MO said Carboplatin also causes neuropathy. She said we can delay a week and see how you are doing next week and I said I think I am done, and she said she was fine with that. She said UCLA is doing a trial of 4 vs. 6 TCH, and finding that 4 is enough. But she said right now standard of care is still 6, so they try to get all 6 completed. She used a thing that looks like a tuning fork to evaluate neuropathy and then made me close my eyes and then tell her whether she was bending my toes up or down. Sometimes I couldn't tell. She said my right foot is compromised, but at a level that will probably recover, but said more chemo right now may make the neuropathy permanent. The very tips of my fingers have no temperature sensitivity, so she said that should come back too.

Also baby whites dropped to 2.79 and liver enzymes now measure "HIGH." I think a round 6 would have been really bad. So I am glad I am done, only getting the Herceptin today.

So Herceptin going in, and I am done!

ksusan

Abdominal breathing is supposed to help decrease the length of hot flashes. It does for me. Bonus: It's also one of the anti-lymphedema exercises. Inhale deeply through your nose to your belly (not just your chest) on a count of 5. Hold for 2. Exhale through your nose for a count of 5, contracting your belly as you do so in order to pull in your diaphragm.

Jackbirdie

I hit a new low a couple of weeks ago when my painful but reliable constipation turned on me. Fortunately I had ordered in some Depends for after surgery in case I couldn't get out of bed.

Anyway, I now have, instead of reliable constipation, stealth D. Can't trust anything, a sneeze, a fart, kitty making me laugh (see pic below- she looks like an alien jumping at something imaginary in the window, hysterical). So it's Depends for me. For now. Really depressing.

Ninja- that sux about your port. And don't you wish something snatched your body and could do your chemo for you! (As long as you got it back when it's all done). Btw, congrats on the 50% milestone! 🎉🔔🚴🔔🔔🏆

Alien kitty

Jackbirdie

Theresa- so glad you are done. Here are your bells ringing! Yay!!!!

🔔🔔🔔🔔🎉🔔🔔🔔🔔🔔🎉🎉🔔🎉🔔🎉🔔🔔🔔🔔🔔🚴🚴🚴🚴🚴🚴🚴🚴🚴🚴🚴🚴

I know I did that once already today, but you deserve an encore

Trvler

Mary: They have to verify every time they are giving it to the right person. It drives me crazy too. I am so sick of my own birthday. I was in the ER the day after it having a CT and then told I might have a tumor in my heart and these people were saying Happy belated birthday. God. That was the last thing on my mind.

I have a question for those of you who, like me are doing chemo first. How are you coping with knowing you still may have cancer in your body? I am not coping well. EVERY time I feel a pain, which I still do, I am freaking out. I feel those little bee sting pains up around my upper chest, where it is very little tissue and mostly bone and I start thinking I have cancer in my bones and I just can't stop thinking it. I feel like there are areas in my nodes that I didn't notice before. Am I noticing things that aren't anything or could the cancer be growing while on chemo?My upper left shoulder (the cancer side) is tight and I used to think it was muscle tension but now I am thinking what if it is cancer, too?

I honestly don't want to know. I don't really even want anyone to answer. I HATE CANCER.

molly1976

Allison, I had surgery first and I have all those exact same thoughts. I think it's just par for the course no matter the specifics of our specific diagnosis or treatments. I sent a (semi-crazy, I acknowledge) email to my MO just today asking if he thought it was possible that a stress fracture in my femur FOUR YEARS AGO that still aches sometimes was actually bone mets and I have secretly been stage IV this entire time. I know the answer is no, but I just need him to tell me I'm being crazy, I think.

BBwithBC45

Allison, I'm the same way even though I already had surgery and my husband keeps telling me that my nodes were clear, my margins were huge so I am cancer free. Each pain I have, or remember having had makes me think that cancer is lurking somewhere there.

Jackbirdie

me to

Trvler

Thanks, ladies. I know it sucks to feel this but I don't feel as alone.

Italychick

I have it too. Every ache, tingle, etc. and I think "more cancer." I have a damaged vertebrae in my back, and even though I know it is damaged and I have had a bone and PET Scan, when I feel it I still think it's a cancer metastasis. If I feel a weird area, I think is that a lump, or the start of one? I posted earlier in this forum that one day I touched my port and about pissed myself because I thought it was a lump because I forgot about it.

I think that part is just going to take us awhile. I certainly hope it goes away someday.

ninjamary

Allison - I feel your pain (sort of) I was so glad to get the mass removed first. It was the greatest feeling in the world You have THAT to look forward to.(?) BUT like everyone above I still worry that there are microscopic super nova molecules hiding in my body. I'm already debating setting up an appointment with a professional when this is all over. I need to learn how to deal with the end of treatment.

ninjamary

Cats crack me up with running out of room and running back in.My cats love the dog too. I am not of fan of Felix climbing up the drapes. Seriously what the hell? They have all these tiny little holes that you can only see when the sun hits that side of the house. I am a fan of Felix (doesn't affect cat #2) getting high on catnip. I used to grow it, but it didn't seem to come back this year. He'd just hang out in the plant.

Enjoy "alien kitty" escapades. They only get better.

ksusan

I make myself notice that if I pay as much attention to other parts of my body, there are plenty of aches, zaps, and tingles that have nothing to do with cancer and that wouldn't even register if I weren't paying attention to them. As for my chest and arms, they've been well-examined by multiple medical folks and hurt in the ways that I was told to anticipate them hurting after surgery (for example, "You'll feel like a horse kicked your shoulder the day after port surgery"; expect some aching in your armpits because I examined your lymph nodes and it takes awhile for everything to heal"). Knowing this helps me talk myself down. Also, the cancer didn't hurt (for me, anyway), so I don't have pain = cancer in my head.

shaz101

thank you all for your congrats and kind words. Bone and joint pain is hitting hard today and I'm waiting for the anxiety/jittery feeling from Dex to kick in...then the migraines!!! I'm feeling upbeat though because I know this is the last time!

Congratulations Theresa 🌹 I love hearing about everyone finishing there last chemo. I'm really sorry about the neuropathy. I'm sure with your fitness and positive spirit you will overcome it.

Carrie37

Congrats Theresa! I am so happy for you and I hope the nueropathy goes away quickly.

I feel the same way about a recurrence. I wonder if cancer made it into another node and is traveling about my body. And it does happen so I feel like it's normal to ask questions and be worried about the cancer spreading. And if it happens we are now aware of how quickly our lives can change in one day. And it's really scary. But if it does happen we are going to do the same thing we are doing now. We fight. Day by day and sometimes we take it moment by moment. But we have to live because this is the only life we get. And we have each other which is completely awesome. We are not alone and we are strong!

Jackbirdie

nicely said, Carrie.

And I believe the best fight, if one can manage it, is to fight back by living. Living well.

I wish I could follow my own advice, as I seem to have spent the second day in a row cowering in my bed, not even brave enough to keep my eyes open.

But indeed so grateful we have each other

Carrie37

Definitely easier said then done. We need to convince ourselves that it is okay to feel scared and like we don't want to deal. Don't be too hard on yourself Katy. Some days are just really hard. I started seeing a counselor at the cancer resource center near me. I figure it can't hurt to talk to someone who might understand since she sees cancer patients all day. They also have some very nice waterfall meditation gardens which is a bonus

Jackbirdie

I had an appt with my shrink today but I slept through it. Now that simply won't do! Haha.