August 2015 Chemo Group
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Hello ladies!
@JenPam, you're beautiful! I swear I really like the bald look - on other people, LOL. Although I'm sure I'll get used to it when it comes to that.
@KateB79, thank you for reminding me that next Friday will be treatment #6, the halfway mark of my 12 weekly treatments. Following that, I'll have Herceptin every three weeks for a year, but that seems so little compared to going in every week.
Son went along, came back to see me but also went for long walks with his dad, so I think it was a good balance. He also got to meet some of the other people getting treated, so he could see that I'm not the only one going through this. (One of my chemo-pals was wearing a cute wig in a lavender-pink gradient, which looked so familiar, but I couldn't place it until she said "My Little Pony" at which point I burst out laughing!)
I had meds added today. My MO seemed quite concerned that I was experiencing nausea every day, because his #1 aim is maintaining quality of life while smacking back the cancer attack. So he added Emend. After they started infusing me they told me it can have the side effect of causing headaches! So I took a tylenol as soon as the treatment was over and another 1/2 of a hydrocodone before sleep. (Hmm, sleep? What is that again?) Scared to wake up with a migraine so I'm sort of scared to sleep. But I know I'll have to.
Little bit of a dilemma today. The nurse who has been working with me since Day 1 was back today (she was absent last week on vacation). From the beginning, her process of connecting the needle to my port has been somewhat rough and seemed kind of long and drawn out, but today was much more so, and painful to boot. She had to start over 3 times, and tonight when I was getting ready for bed I put some neosporin on it, on her recommendation, and saw there were actually 3 separate puncture holes in my skin.
Last week when she was gone, a different nurse placed my port, and it was easy, smooth, quick, and not painful. In fact I didn't even feel it. I am seriously tempted to ask for the one that worked with me last week to take over placing my needle (especially since the one who did it today told me at the end of the day that I will have to lie down to have the port needle placed from now on - I had to lie down today as a "last resort" and it was the most painful and uncomfortable placement that she tried, and although it worked, I don't want to repeat that experience!)
My question for y'all -- how should I approach this? Should I try to get in touch with the nurse I want to work with, and let her handle the political fallout of asking to take over placing my needle? Should I talk to my MO? I know he wants patients to be comfortable, so he would probably acquiesce to my request, but I'm loath to get my current nurse in trouble, especially as she is a senior nurse in the clinic. Any advice is welcome, and you can send me a direct message if you don't want to post here.
OH one more thing, for those of you experiencing anxiety, please direct-message me so I can tell you what I'm taking. It works, and it has zero side effects for me.
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Mom2Aboy - I have found that Emend works well. I take it for 3 days starting with day of infusion.
As for the nurse and the port - I would find her when you walk into the infusion room and just ask her if she would do it for you again this week. You should be comfortable! Let her deal with fallout if there is one. I think everyone there wants you to have the best experience possible there so put your needs first. The other nurse you will never see again after this is all over. My MO is not always present when I go for my infusion so telling him would not help if that were my case. Don't know if you would get current nurse in trouble - just tell the "good one" what a great job she did and ask her to do it again. I wouldn't mention the other.
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Hi all, been lurking around a bit lately, misery loving company and all (haha). I'm happy to see that some of us are dealing well, and sad to see that others are having so many difficulties. I am falling very squarely into the latter category. Had my #2 on Monday, was joyous that the side effect meds worked! No nausea, not even a pop of queasiness. I thought, "Okay, you CAN do this!"
Then Wednesday came.
Holy cow, the fatigue, the fever, swelling at the back of my neck (scary!) and another trip to the ER. All tests came back ok, but it looks like I have a small infection in my skin (really???). Back on the antibiotics for the weekend. If no improvement by Monday, back to the doctor and we may have to re-think the chemo mix. My body is not handling this stuff well at all. This past round it took 36 hours before I stopped peeing red/orange. Antibiotics seem to be working; fever down, swelling way down. Still very little energy, but I can almost live with that. I think I'm going to have to live in a bubble for the next round!
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Mom2aBoy, do NOT tolerate this hamfisted nurse. But agree with you and others, it's a difficult dynamic. I follow @Granger_Kate on Twitter. She's a doctor who is having chemo. She had a similar problem to you, and raised it with the head nurse. What the head nurse did was call ALL the nurses in for a revision session on dealing with ports, carefully not singling out the nurse who was 'complained about'. What a sensible head nurse. I hope you find a similar one. Apparently it worked for Kate.
Everyone seems to have infections AND side effects from treatments. What a yucky experience we're all having!
Me? Yesterday had #7 of 12 Taxols. And gave my OWN Herceptin injection with nurse supervising. Very proud, as it means when I finish this chemo I can give my own Herceptin for a year. I've got a big bruise on my leg but I think I know what I was doing wrong (gave it too quick). Prefer to have bruises than have to go in for the jab all year. Completely exhausted and a bit 'speedy' with it today but can see the light at the end of the tunnel.
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Hello.
Am having the same problem with a nurse who administers my daily leukine shots. She was having diffuculty too in finding my veins for a blood draw( i have good visible veins) and true enough the routine draw stung and caused a small bump.
The other nurse I did not feel the shots at all!!
There's only two of them who administer the shot. Maybe i'll ask that nurse if she can do mine all the time.
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Mom2Aboy, I would also speak with the head nurse. Today if possible and take a picture of three punctures. If the senior nurse is missing the port and having difficulty, she may be hiding her own issues that must be addressed. No one, including her, wants to experience an outcome worse than what you've gone through today.
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Mom2aboy, talk to head nurse, say you want the same person every time, that it gives you a comfort level and pick out a nurse you are most comfortable with. I did that without singling out any nurse I didn't want to work with, I just picked the one I liked the most and said I want her every time. You are the paying client, after all. And there were two nurses I absolutely did not want poking me, they were rough, and I felt their cleaning of my port site before the stabbing wasn't as thorough. Avoid the negative, focus on the positive and pick whoever makes you the most comfortable. You shouldn't have to deal with being stabbed three times. I've watched them stab me so many times I could do it on the first try.
Another thing I do is pull the skin on both sides of my port tight so the port really stands out. And deep breath in, then start breathing out when they stab you. It seems to work for me.
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Oh thank you all for the great advice! I will try asking the other nurse directly if she can set up my port and let the first one do the treatments after the port is set up. They might not mind that arrangement. I get the feeling that the nurse who's been placing the needle doesn't exactly enjoy the process, because my port is not in the position she's used to. I won't criticize her, just ask plainly if it would be possible for the other to do my setup as soon as I walk in. I am the patient!
I laughed out loud at the idea of a "head nurse" and also at the idea that I'll never see them again when this is all over. The clinic is very small, I think there are only 3 or 4 nurses altogether. One thing I could do, though, is find out if there's a different day I can come where the first nurse isn't on duty. That didn't occur to me before. It's worth a try. As for never seeing them again, fat chance! I knew of this clinic only because my husband was treated there years ago, and we go back every year for an annual evaluation because the type of cancer he had is prone to recur even after being wiped out completely. So I'm sure I'll be seeing her once a year at least. It will be best in the long run to do this in the nicest way possible.
@bunnybumps, any chance you could switch to a low-dose, 12-week regimen like the one MsBrompton and I and Alice12 are following? I think it's much easier on the body, especially after reading about the low levels of white blood cells some of you are reaching. My MO put me on Leukine as soon as my WBC dropped below normal. I think weekly treatments just allow for closer monitoring, plus a more stable amount of Taxol I the bloodstream. I hope things start working out better for you!
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Rats! Chemo is being delayed a few days due to low wbc's. I get the meds every 3 weeks, but it seems my chemo-shocked little bones can't recover fast enough to renew the immune system:-( Oh joy, more Neupogen shots. Ouch! Midweek after round two, the wbc's were 2.9, then dropped to 1.9 the day was supposed to be infused for round three. Why drop?
This number was never very high, even before ever having chemo. Was .8 after first chemo round. Want to be able to better control it...how?? Eating like a hog; all healthy stuff, protien supplements, veg & fruit, no red meat...bla bla, doesn't seem to help. Execise regularly, lots of liquids. No caffiene. Yadda yadda. Gained weight, yet did not gain an immune system.
What can make that count go down when it was up midweek? How can we make it go up? Feel okay tho less stamina. Havent gotten any infections or fever. MM helped with everything but this (thankyou mean green!!). Sucks delaying this s**t. Wanna get it OVER with! Grrrrr...
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Oh Birdysmom how rotten for you! The only thing worse than chemo is having your chemo delayed.
It won't make any difference to the treatment in the long term but it's bummer bummer bummer and wrecks your schedule. HUGS
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Mom2ABoy Do you get paperwork whenever you go in? the name on my paper is the name of the head nurse. & always tell your Dr everything.
That's what I've been told last week when I have my picc line dressing change. I took a Zofran that morning because I had an upset stomach. It was first time ever other than right before chemo). I told the nurse I thought it's something I ate the night before. But she said, "Good Girl!" Apparently it's more like just a normal side effect (that chemo affects the digestive system). The nurse always ask whole bunch of questions, even smallest changes I notices. She said they report every detail to the MO.
Birdysmom Oh that totally sucks! how often do you have blood test? I only have it done day before treatment. I can't wait to finish my last one!
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mom2boy - I love the Emend. I have no nausea at all. The headaches are mild. I put an ice pack on my forehead and eatch Netflix to forget about out.
Regarding the needle pokes... I'm getting poked waaaaay too much, so I instituted my own 1 try policy. For bloodwork I request a butterfly...and once people see u decline another poke, they let you just wait for the "good one." For infusions and IV's, I warn them about my little tired veins and how I was poked 9 times (!) for the PET scan, so I'll wait for the best one. Be sweet, but firm.
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@Mrs. Brompton- Thank you for the link on the knitted knockers. I now have another crochet pattern to make to help me and others and they are here in the US too. However you may see it, there are SOOOOO many groups that help with so many causes that sometimes a person doesn't know where to begin to look for help. I hadn't heard of them, so thank you.
Life since my infusion of AC on Sept 10 has been basically one ginormous rough patch. It was the week from he!!. Felt decent days 2 and 3 and then I started to go downhill on day 4. Typical nausea or I should say my typical level of nausea and aches and pains along with some energy, stuffy nose and sore throat. The nausea ended by Tuesday and my WBC was 14.5. By Wed, felt feverish, but was below the threshold (100.5 for me). Took some ibuprofen and that didn't seem to phase me and my energy plummetted to nothing throughout the day. Took my temp in the early evening and it hit the threshold, so my husband left work an hour early to come home and take me back to the hospital (45 min drive and he works near it). They ended up admitting me because my WBC was 1.3. Even though technically, I was still within normal range, because of my fever they kept me and had me as neutropenic. So I spent a day a half in the hospital. Also on Wed, I was told that they found a lesion on my left pelvic area and wanted to do a bone scan. I had just scheduled that for Mon. Well, I got lucky and was able to get them to do it while I was inpatient. And DARN IT it HURT. Yes, they numbed, but the after effect of muscle pain was/is unbelievable. Still hurting, but after putting a heating pad on it earlier today, I am moving much better.
I am finding out that I am extremely nausea sensitive to the chemo and am unable to take the Zofran because it triggers migraines. So I will be refusing Zofran at next infusion this coming Thurs, so they will give me something else. For home, I am going to try and piggyback compazine and phenergan and pray that it helps. The positive in all this is that I am able to keep everything down, I just feel like crap. I am praying that the next tx will go smoother and I don't end up back in the hospital. A friend's husband who had stage 4 testicular cancer and beat it, said to keep a bag packed in the car for such occasions and yes, I will be doing that.
Well, I think I am done rambling for the moment, now to read and catch up with everyone and take notes, so I can respond. I hope everyone has a great remaining weekend.
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Birdysmom - I'm having the same problem with my WBC. Chemo, they go low, neupogen, then pustules in throat, swollen lymph gland on the back of my head, and then I know I'm not at 3. Right now they keep giving me antibiotics. Can you get chemo if on antibiotics?
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Hi ladies - just a little update on my steroid experiment....so I cut back on the steroids this round (went from 2 pills to 1) and I definitely slept every night. But my tummy felt worse and I was exhausted much of the time. The last 3 nights I went to be at 8 PM and slept 10 hours. I never sleep that much! I also have found that it is taking me longer to feel back to "normal" after this round of chemo. So I am going to discuss with MO on Tuesday but I think I prefer the lack of sleep over the week of lethargy. At least when I wasn't sleeping, I wasn't tired. I just want my normal life back.....don't we all! I have been lucky so far with minimal side effects. I am ready for all this to be behind me. Enough whining......this too shall pass.
You ladies are all brave cancer warriors! Keep putting one foot in front of the other.
Just curious - how many of you are following chemo with radiation? I start radiation in Nov. Five weeks/5 days a week. Has to be easier than chemo!
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Hi Suzanne50, my tx regimen includes CT 4 rounds, then radiation 3 weeks, 5x5 and a 16th boost, then some kind of hormone therapy. I am post menopause so I don't know which therapy.
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I am still unsure about radiation. I haven't met with the Radiation Oncologist yet. That meeting Is on the 28th for me. My surgeon recommended that I shouldn't need to have it. I had cancer only in my left breast(2 benign lumps in my right)but had a BMX. So I essentially have no breast tissue left. My margins were clear and I had no node involvement(sentinel nodes done on both left and right). So I need to do some more research on radiation, meet with the Dr and then make an informed decision. I am worried about scar tissue from the radiation, as well as having radiation with my tissue expanders in. The surgeon said it may reduce my risk of reoccurrence from 5% down to 1%, but may increase my chances for other types of cancer In the future due to the radiation exposure.
Whatever I decide, I have to live with my choice. I am only 45 and pre-menopausal so I want this beast slain....hence why I had a BMX right away. Was aggressive with my surgery. I only want to do this once....
My PS was just back to work from her own BC, BMX, reconstruction, 4 rounds of chemo & she opted for no radiation. She has been a great source of info for me. I see her this week for another fill and will talk to her about it as well.
I wish I didn't have to make these decisions.....I got this.....I can do this....
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Crikey (as we say in UK), you active posters are sure going through some bad ups and downs right now. Tough side effects, tough choices, and the enduring uncertainty of all this. Maybe some of the lurkers are having a better time?? (Or are we all in the troubled valley of this experience?).
Actually I had a much better day. Just a walk through the park and along the stream to a nice French cafe where we had tea and toast. Then felt well enough to clean the house and change the sheets on the bed. Son came over to visit with his lovely girlfriend. Watched the rugby. A 'normal' day, in the scheme of things. I thought I'd share that to balance the vibe :-).
Today was day 47 of 80!
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Tazbear89--your experience sounds similar to mine with neutropenia and nausea. Phenergan did help but mostly recovering from the low WBC and infection helped most. It took over a week to feel somewhat better and be able to eat much and keep it down. Then I could not get Taxotere at my next appointment which is concerning. Looking for treatment modifications. Good luck to you.
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I'm just checking in to say hi and to express how sorry I am that so many of us are having such terrible SEs! Hang in there, ladies.
My next infusion is Thursday. . . .
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Suzanne - I'm doing radiation after chemo. I have another benign but growing lump I might have removed before 7 weeks of radiation. I'm concerned about the lethargy. Right now I have 2 days of tiredness, I can't imagine 2 1/2 mo of fatigue.
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Sorry to hear it's been so rough for so many of us. This second AC has been a real trial. The fatigue has been nearly incapacitating. Other than that. I haven't felt too terrible. I can't quite control the nausea, but it hasn't too bad. It's starting to ease up some, but I'm hoping the MO has a solution for the fatigue next round. I can handle it if it doesn't get worse, but not sure I have any wiggle room for additional fatigue.
On a positive note, it is so nice to see that several of you are over half finished and even only have one treatment left. That is awesome!!! It'll be so wonderful when we have our first chemo graduate.
@Suzanne - I'm doing radiation, but I had a lumpectomy which I think is almost always followed by radiation.
Keep hanging in there everyone. We can do this!
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MsBrompton "quasi-lurker" here.... I think I'm the lucky one.
Today is day 14 of round 3 TC (one more Sept 28). My side effects are minimum in comparison. Beside ending up in ER few days after round 1 with low sodium because I wasn't eating; the worst part for me is dealing with the heat waves here is southern California. (about 90F/33C in my house, no air-conditioning). >_< Last week I went into work just for the cool air.
Other than that, chemo-wise, everything is going smoothly. ~~
At first round, the nurse took one look at my veins (they are small & deep) & text the MO for a picc line before round 2. I have no problem with it. flush it daily at home & sterile dressing change weekly at the medical center. (I read someone got 2 collapsed veins before getting a port?!)
The only side effects I experiencing are the chalky taste in my mouth (it comes & goes), but I still able to eat. Also I have been feeling more tired this time around -- have to catch my breath & rest whenever I do more physical movement (like walking upstairs or doing chores)
Overall WBC looking good. (I had blood drawn day before infusions), I sent my doctors friends the "complete blood count" results & they said it's looking good. I have some itchy skin (basiphil was higher in % before round 3, which contains histamine). No problem with constipation/diarrhea, nausea, or mouth sore, no neuropathy. No allergic reaction to infusion or any med. I have take steroid for 3 days beginning day before infusion (5 doses), And Neupogen day 3-7 (do it myself at home). without any bad reaction.
I lost my hair, of course, not completely (think Linus from Snoopy), but I'm just using skull caps & hats. I'm ok with it. I'm just home, at work (working part-time), or at church.
So there's pretty much on my end here. One more TC (Sept 28) & I'm done with this part. Next is Hormone Therapy. I hope I don't sound like bragging or anything, but I guess I got lucky...
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@Superius, @MsBrompton, it's actually nice to hear some happy stories. Keep 'em coming! Don't feel guilty for having an easy day, for heaven's sake. We all have some easy and some rough, and usually we come here to share the rough.
Everyone experiencing nausea, based on my experience this week, if you haven't tried Emend, ask for it. I got it on Friday and have had no nausea compared to last week. Today I even went to the local "Bite" festival and ate a few crazy dishes that I wouldn't have gone anywhere near last week. (Ban Mi Veggie Hot Dog anyone?)
Two momentous things this week: my hair is for sure falling out, and even accelerating now that I've had a second Leukine shot. (I held ice to it after the shot for about a half hour and the reaction is much milder this time, so that was also good.) And I've decided I'm going to tell my parents about what I'm doing and why, after talking with my husband and sister. That's going to happen tomorrow, so wish me luck.
Have a good week everyone, see you here soon!
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Luck!
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This was a rough weekend! I had AC #3 on Thursday, felt fine all day Friday until about 7pm when my stomach starting feeling off. I took a companzine around 10, then spent the night vomiting (with bonus diarrhea). Things started to settle down by 6am. I called the MO's after hours line and since I wasn't dehydrated or running a fever they felt I could recover at home. Sunday was better, but I am still tired so working from home today. I am hoping this was food poisoning since I still have one more round to go and really don't want to do this again. This was an extra bummer because this was the weekend that my sister came to visit.
Sending healthy vibes to everyone this week.
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Thanks Molliefish! I like your new picture btw - you look great!
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@VickiRides, what a bummer to miss out on your sister's visit. It does feel like food poisoning, doesn't it. I only had it that bad the first couple of weeks, but I haven't had AC at all, so maybe they're different. (It seems to me like other people who are on AC have reported worse reactions than non-AC'ers, but I don't know.)
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Thanks for the hugs and support! Got the meds today, so only two day delay. Back to drooling alot and feeling like there's a lump in the esophagus for a few and gas that won't pass. The temporary SE trade offs better than succumbing to scary BC!
Sloan15- am not sure if chemo can be done when on anti-B's. If not, the docs would put priority on finishing them to be sure all's well.
Hugs to you ladies going in this week.
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Cycle 3, Day 5. The last 24 hours have been rough. The fatigue and dizziness are keeping me bed/recliner bound. I had a nasty bout of diarrhea last night that had me stranded in the bathroom--severe hot flashes that almost made me pass out, could not feel my legs, could not stand on my feet. Scared to eat today--a little nauseated. Weak and miserable. I know this will pass and I will forget and think "oh, I can do one more." I want so much to be done. This is only half-way.
I am living on Sonic slushes. I know the sugar is bad, and honestly it is way too sweet, but flavored crushed ice is about all I can stand. I have to get fluids someway... Feeling worse as the day goes on, and the last two cycles day 6 has been the worst. Struggling.0
