March 2012 chemo
Comments
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It's wonderful to hear that the Marchers who started today all did well. I will hope that it continues that way!
Karri- you are cracking me up and breaking my heart at the same time! As if we don't have to suffer enough indignities through all of this!! I'm glad to hear you can get it taken care of tomorrow though. I will keep you in my thoughts that it goes smoothly and takes care of the issue!
Sissy- i could picture the hair "needles" just as you describe. I try to imagine what it will be like, but I just can't. Hopefully losing the stubble will at least make you more comfortable?
Nsmolen- how's your nausea? Did you take something? It's a lot like pain...you need to stay ahead of it. I hope your evening gets better and you get some relief!
Likachickadee- welcome! I vote let your peeps help you. You may end up not needing much, but they will feel better for having done something for you. I had so many offers for help when I was diagnosed I thought I would go crazy. I finally let people start bringing or sending over dinners and not only do they thank ME for letting them help, but I also found that it really does help having one less thing to manage. Sometimes it's hard to let people do things for you, but it can be really good. As for SEs, we all really do seem to be having different experiences. I was fine the day of my infusion (just felt fuzzy and had heavy limbs) and a slight headache on Day 2. Then Day 3 hit me like a truck and I had a horrible headache and was completely exhausted. Day 4 was better, but I had chills and feverish flashes all day. The entire time I had no appetite and had to eat very slowly. I'm now on Day 5 and am feeling pretty good. Not right, but better. It was all manageable, but I was very grateful to not have to get up if I didn't feel up to it. Having someone around can be a comfort. Good luck! -
hi guys,
First round went well. I like my chemo center, they make you very comfortable, they also let me pick 3 hats from the ones volunteers made. Whole thing took about 4:30 hrs, but had meeting with Dr., blood draw, etc. Feeling much better than I thought I would. So far no real side effects except for being tired. Although I was tired before the chemo as well. Taking promethazine preemptive for nausea, just in case (they gave me 240 of the things). No problems with the TAC. Have not had BM but began stool softeners this morning and took lax this afternoon just in case. I seem to have an appetite but am unsure if I should keep eating. Any advice?
Man I thought I had all the rxx's I would need and still they sent me back for more this afternoon. Hoping the shoot tomorrow goes as well. Dr says this first round should start shrinking the tumor and I hope so cause man it hurts. I look like I got a bad implant one side and feel like it too. Sorry if it is tmi, they did put a lot of stuff in that little ol' IV.
Anyway, any advice on whether I should go ahead and eat like normal would be appreciated.
Corky
Glad we all made it through so far. Good luck to all in the days ahead.
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Anybody heard from LisaJ? She was getting her first today. I hope you're okay, Lisa. SE's are apparently very different for all of us. Masserz, I Iike how you put it: "not right, but better." That's gotten to be all I hope for anymore. Day # 9 for me. I'm not right, but I'm better. I haven't had nausea or headaches, but terrible heartburn and that constant feeling of just not being "all there." I don't know how some of you are managing to go to work during this. I don't think I could do it. I'm glad I'm retired. I hope the newbies coninue to do well.
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On the subject of eating: Try to eat small meals more often. Avoid greasy and spicy. Also avoid acidic foods and drinks. Drink lots of water and juice (not high acid though) Try to have some protein with each meal. Keep it simple...yogurt, cottage cheese, fruit, scrambled eggs, toast, soup, crackers. Also it's probably best to take your anti-nausea medicine on schedule even if you're not feeling nauseous. After the steroids and other drugs given with the chemo start wearing off you can see how you do without the anti-nausea meds. Good luck.
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Headache got worse as the evening went on, and strange heavy sensation in legs and arm, and nausea hit between 7:30 and... Well, I just woke for the millionth time about 15 mins ago and feel less nausea! But totally pooped. Actually that is also an accurate SE: totally pooped! Blessings,I guess.
I have decide it's crazy to pump people full of all this stuff and then just send them home an realistically expect them to sort through all the literature to decipher which SEs ae acceptable, and which are the "call right away" or "go to emerge" ones.
Incoherent thought for the night.
Many hugs to all this night wherever you may be and whatever you may be feeling. -
Welcome chickadee. I hope you can find some comfort with this group. I feel close to these ladies. We can share experiences and cyper hugs when things are not going well and celebrate with those who have had a good day.
I have a 1 1/2 to 2 hour drive to tx once a week. I will be accepting help with the drive from family and friends. I do not want to be that far from home and get to feeling bad by myself. I have only had one tx but if I was not far from home I would certainly be able to drive my self.
Karri
Hang in there. Help is on the way. I'm so sorry you have to deal with this problem on top of everything else. I will check back in to see how you do.
Thanks girls for the info on aquaphor. I do need this.
One of these cannot sleep nights.
Bev
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Good morning, Marchers! Wow, gone only a day and there were so many posts to read through this morning. I'm a little foggy so bear with me.
Welcome chickadee. Hate that you're here but glad to see you found us. We're all in this together and with each other, we'll kick cancer's a$$ to the curb!
Day 2 from first tx yesterday. Infusion was uneventful - for some reason, I had stinging around my port site when the Adriamycin went in but it seemed to be going in the right place so we continued on. Had a foggy head last night which has carried into this morning but its not too bad. I broke out in several sweats last night as well - did that happen to anyone else? A little queasy this morning so I just took a Compazine. Nurse said not to wait until it turned into nausea. Taste buds still intact, no metal mouth and no other noticeable SEs. I go for Lymphedema 101 today, will work with a massage therapist on exercises for possible cording, and will get Neulasta shot.
Glad to hear that everyone made it through #1 yesterday! Here's hoping for minimal SEs and good days ahead.
Love and hugs to all!
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Hi ladies glad to know everyone doing well so far.
To the ladies that had their treatment and going back for the Neulasta shot today remember to take the Claritin before the shot.
Lisa - I have been breaking out in sweats at nights too, I go for my tx today, will ask my onc and let you know .
Best wishes to everyone having treatment today!!!! -
Lisa: sounds like you're doing great! That's good news... I couldn't imagine doing all you are doing today- my nausea and headache kept me up last night, and I am tuckered today. Nausea is gone though, and not much headache. Ate a small breakfast, and plan to lay low until neulasta shot at 12. Still a little dizzy. Have a good day2!
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Lisa, I didn't have any sweats last night, course I was up for several hours reading other's day 1 and 2 SE's. I too am queasy this am, took a zofran an hour ago, and just took my claritin. Oh, and I took a protonix early, as heartburn is bad. Am hoping that helps. I too am foggy, it's frustrating.
Katy, Bummer about the nausea last night. Maybe you can keep on top of it now. I'm getting my neulasta shot at 2:00. The nurse left in the IV catheter, so no pokes today!
My only other SE this morning is the tip of my tongue is tingly.
I hope everyone else is doing well. We can do this!
One other thing, my onc said to push gatorade more than water, as I need to replace electrolytes. I am probably doing half and half. Even the light gatorade is so sweet.
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Good morning ladies! I am wondering if I am being realistic here. I just told my new job that I would be out Thursday for my first treatment, but back to work on Friday. I plan on resting over the weekend and then working after that. I have a desk job and a very short commute. Just wondering for those who are working is this doable?
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Onvacation: I felt like crap the day after my first infusion. I was tired and just crappy feeling...no nausea or headaches or anything like that...just off feeling. Actually, the feeling did not start to go away until 5 days after my infusion. I went to work on the the 4th day but I was really not with it. All of this may have been because I was constipated though.
To the many others: Good wishes as you progress through the days. Sometimes you have to take things one minute at a time but you will get through it.
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Everybody's different, but usually days 3-7 are the worst, so you probably could do that.
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Thanks! Since the job is so new, I don't want to take a lot of time off, but my boss mentioned I could work from home some if I wasn't up to coming in. Just want to save those days for when I really need them!
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Well, I am now under "house arrest" - have orders to stay away from crowds, kids, animals, anyone sick. I feel OK, but I am definitely the Mayor of Tiredville!
My one week follow up with MO yesterday went well, but the blood work showed neutrophils to be extremely low, leaving me without much if any defense against bugs. I'm not even to eat anything not cooked - no raw veggies, no salad bar, etc.
I go for chemo #2 next week if numbers have come back enough. If not, may have to postpone. Really hope I don't have to get off schedule.
Karon -
Onvacation - I have been working full time so far. I am on day 6 of 2nd tx. Some days are hard because I'm tired but I have been making it thru. I also have a desk job and a short commute. I find if I go to bed earlier and take benedryl on the nites I'm a little more restless it really helps. I do plan on cutting back a little maybe to 5 or 6 hours a day in the near future.
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Amymom-there's no way I could drink Gatorade right now. I seem to be having the opposite issue of most people here in that I cannot tolerate anything "sweet". And by that I also mean white...I would rather eat dirt than rice, potatoes, crackers, etc. Things that I normally find lovely are just cloying and gross or so bland they taste like cardboard. If anyone else has that issue or just doesn't want the extra sugar, try coconut water. I admit I'm not a fan of the taste, but some of the flavored ones are okay. Even those are too sweet for me, but if I dilute them with water, I can drink them and then I get the electrolytes.
Lisa- i've also had the sweats...just not necessarily limited to night. : (. I was told to expect them, so wasn't surprised. Another thing that makes it hard to sleep though. The funny thing is I will be having sweats, but at the same time my feet are so cold I have to put socks on!
Kim-i worked the Friday after my Thursday infusion and made it through okay. It was hard to concentrate and I wasn't as productive as usual, but I also want to preserve my time off (and my job). I had to take Monday off, but worked yesterday and am working today. I am the only person at my company that can do my job and we are in a critical phase right now, so I'm trying to do what I can. Keep in mind that each cycle may be different, so you may have to adjust your plan as you go.
Tc- "one minute at a time" is so apt. That's definitely my new reality. I had a decent day yesterday, then last night was horrible and I'm now wiped out again. I guess there's no predictable pattern.
I'm curious if anyone else has had or is having this issue... Periodically throughout the last couple of days (and for several hours during the night last night) I get sharp, stabbing pains all over my body. At first I thought I might be getting bone pain from the Neulasta, but I don't think that's it. It's not achy, like flu pain, though I do have that in my knees and assume it IS the Neulasta. The other, though, is like being stabbed by little knives and it comes and goes. It does seem to be mostly in my joints like knees, ankles, wrists, neck, etc. but also in my ears, temples, sternum and ribs. If you've ever had sharp gas pains, it's like that, but not in my stomach. After about two hours of it last night, I got up and took a Percocet, but I'm not sure that really helped. If it keeps up today I'll be calling my MO because it's really awful. Any one know anything about this one? -
Thanks Love74. My MO said he wanted and encouraged me to work, so I don't know if this is the same get up and do something and you will feel better or that I will feel good enough to work! I know I will just have to take it as it comes. Thanks again!
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what is Lymphedema...and how do u get it???
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Khintul, that's a bummer! Be careful and good luck avoiding bugs!
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Munnybunni, there's a great lymph edema forum on this board, check it out, lots of information.
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Onvacation: work Friday and save that day for Monday. My bad days were 3-7 with 4 being the worst. Hope it goes well for you!
Munnybunni: my physical therapy group does a lymphadema class to anyone that wants to come for FREE! It is once a month for about 2 hrs. Check around you may find something like that close to you! There is so much to learn and we really need to be educated about it. If you had lymph nodes removed you are always at risk. The site on this forum is also good.
Lisa and Masserz: I am also having sweats/ hot flashes off and on. Sometimes I also wake up in night damp. Hate it!!! MO said it's combination of chemo and hormones. I'm sniffing myself thinking I stink because I'm sweating so much....it's gross. I'm just glad it's not pain! This too will pass. Soon I hope:) -
Hi everyone! I was diagnosed with IBC on 2/7/12 and everything has been a whirlwind experience since. I had a lump on 3/7/12, re-excision on 3/9/12, and PET Scan on 3/12/12. I will have an appt with surgeon tomorrow and a MUGA scan on Friday. I have an appt with MO on 3/27/12 and will probably start chemo on 3/30.
This has been quite the roller coaster ride! My husband and I have been staying with my daughter since my disabled son, his wife and 5 daughters live with us and I didn't want the runny noses and uncovered coughs to trip me up.
Also, my wonderful husband is having a major surgery (hernia repair the size of a small child's head) April 9.
There is much drama in my household right now and my concern is when I have chemo, what are my chances of getting some kind of infection from my beautiful, germy little grandchildren? I love them with all my heart, but they are kids in school.
I am also a Program Specialist for students with multiple handicaps and am in classrooms all the time. Again, what are my risks?
Thank you.
Diane -
Diane I just wanted to say welcome. Unfortunately I cannot answer your question because I haven't actually started myself (hopefully will start Monday).
Hope everyone had a good day. Trying to read and type on my phone so I can't see everyone's stories right now. Just a quick update on my surgery. BS went in and reexcised the biopsy site and cleaned e everything out and put in a drain. I also got news that a blood culture they took on Monday at the MO grew out a specific bacteria. Luckily the antibiotic they already have me on is broad enough to cover it. Fingers crossed.
Ok here is my "non chemo but I am really working on getting chemo" question of the day. This drain hurts. I can't see the actual incision because of the bandage bt it has not quit hurting since I woke up. They gave me iv painkillers and hydrocodone on top of it but I managed to get something stronger prescribed to sleep. It is just a constant aching, stabbing, or throbbing pain. The meds dull it slightly.
So my question for those of you who have had lumpectomy or masectomy with a drain did it hurt continually? Will it get better? It has only been about 9 hours. DH called the BS office and their opinion seemed to be that it just would hurt. I have this thing in until Monday. -
Hi Karri,
I had 4 drains from BMX and DIEP Flap. There were also 2 small tubes from the Q pain pump going into the abdomen incisions that the drains were coming out of. It was uncomfortable at times, especially where the tubes were going in, but it wasn't unbearable... but I was certainly ready for them to be pulled. I had them all in for 1 week. Maybe your drain is being pulled or pushed at a weird angel because of being covered...? Mine weren't bandaged down or taped down.
Good luck!
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Day 18. How is everyone doing today? I have skimmed the messages - hello to the new posters; it's so nice to see the support in this group.
Diane- My understanding is that chemo attacks cells which develop rapidly. This includes your white blood cells. On around day 10 of your chemo you enter a phase called 'nadir'. This is when your white blood cells are at the lowest and you have very low defense against infection. At this time you could easily catch something, so it's probably a good idea to avoid germy environments for a few days around this time. Your MO will be able to give you more specific directions.
Karri- I had two drains after my mastectomy. They annoying to carry around, but they didn't hurt. No stabbing or throbbing pain. Maybe a little pain if the tube accidentally got tugged or twisted. But for the most part I could just forget they were there. You should let your BS know about the pain.
I had an oncology appointment this morning. I discussed my SE's, and got some more anti-nausea drugs prescribed, and more docusate and sennosides. They had my blood test results from a couple days ago, and everything was good. He specifically checked my white and red blood cell count, and my liver and kidney function, and everything was normal.
I am now booked in for treatment #2, on Monday morning. I know it's a good thing that I can get back in the saddle... but fear is starting to creep in.
I worry that my port still won't be useable for this treatment, and that I'll need multiple needle sticks again. I worry that I'll have a bad reaction to the drugs. I worry that my SE's will be worse this time; more painful, more uncomfortable, more vomiting. I worry that I have to go into hospital.I'm actually more afraid this time than I was before the first treatment. Maybe because I have a more realistic idea of what the SE's can be like? Except I don't think my fears are very realistic at all! I'm going to see a counsellor this afternoon. I might find it helpful to talk through my fears.
I find it funny that people keep telling me how brave I am. If they only knew!
(((((hugs))))) to everyone and double hugs for those getting treatment today. I hope your SE's are small and your smiles are big.
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Hi galena......my second treatment is Monday as well. I share the same fears; will I come through okay like last time? Will my nausea be as bad? Will I be worse? It's harder because I feel so good right now, it's frustrating to start all over again recuperating from treatment.
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DAY 15 and the hair is just beginning to shed. I just wrote four haiku's you might enjoy.... on the subject:
I know the doc said
my hair would soon shed
got hats, got scarves, got wig, but
wine! I'll swig insteadSome say it's not fair
that you lose your hair
while others will shrug, all smug
even as they stare
It isn't the vain
"Oh it will grow back"
state those whose brains lack
when it's the falling apart
that makes the eyes smart
it isn't the pain
it's no choice, watching the changechin up, shall remain
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I'll try this again -- stupid HTML on these pages!
It's DAY 15, and my hair has just begun to shed. I just wrote four Haikus on the subject. You might enjoy.
I know the doc said
my hair would soon shed
got hats, got scarves, got wig, butwine! I'll swig instead
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Some say it's not fair
that you lose your hair
while others will shrug, all smugeven as they stare
---------------------------------
"Oh it will grow back"
state those whose brains lack
when it's the falling apartthat makes the eyes smart
----------------------------------------
It isn't the vain
it isn't the pain
it's no choice, watching the changechin up, shall remain
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Nice poem!
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