Chemo starting January 2019
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Lovin the wig pics, they look great. I had my 2nd treatment Friday. So far better than the first. The bone pain has stayed away so far but the heavy fatigue has kicked in today. Taking a rest day from working at home today. Hoping this round is like the last and the fatigue improves every day. Starting to get a little nail bed pain on a few nails, doesn't help to type on my laptop most the day but so far it has been manageable.
Hope everyones is doing well.
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I found out today that my second treatment will be delayed 3 weeks, so it'll be 6 weeks between treatments 1 and 2. I had to have my gall bladder removed soon after my 1st treatment, and my surgeon and MO agree that I need time for my incisions to heal before throwing more chemo at it. I understand, but I'm so disappointed that this process is stalled.
On the bright side, I don't have any major SEs right now (besides my hair), so I can enjoy a few weeks of feeling good. Has anyone else experienced this... a big gap between treatments? Did it make the next treatment harder? Easier?
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Oh no Kathy03! Sorry to hear this. I was only delayed starting so I can't help about having a gap between treatments. Good luck with surgery and I hope someone can chime in an answer your questions!
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Hello Everybody
I wanted to see how everyone receiving the neulasta shots were doing before I meet with my MO on Thursday. I had mild bone pain with the first one and was pretty happy with it since it was tolerable but after my second AC and neulasta I have had so much back pain I could barely walk. I spent two days in bed crying. It calmed down some but it has hurt to some degree everyday. Did anyone else experience this? Does everyone have to get the shot? I honestly don’t know if I can handle it again without ending up in the er. Just looking to see if anybody did something different that may have helped them. I am taking Claritin and steroids
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I have my second AC tomorrow so I’m not sure how I will do with the second Neulasta but I also take Tylenol with my Claritin. You can also take ibuprofen. I have a reaction to ibuprofen so none of that for me
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By far, the bone pain from the Neulasta has been one of the worst things about chemo. I take Claritin before and during, also alternate between Tylenol and ibuprofen ...and still it is awful. Heated blankets or pads help some. I have gotten the shot on a Thursday the last two times and Saturday and Sunday are the worst days for me.
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For my second round I started the Claritin two days earlier and then when the bone pain started I alternated between Ibuprofen and Tylenol and it was better than the first round. I didn't have to use the heating pad this time for my back. I also used aromatherapy oils/lotion this time too.
How is everyone doing with constipation? Still an issue for me even though I am taking Miralax or Ducolax. I am drinking, walking and eating a healthy diet. I also included Activa. MO wants me to try Milk of Magnesia.
Strange thing happened yesterday at work. All of sudden my stomach just started cramping and I got so nauseous. I took a nausea pill and was better but I've never had that happen before.
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Hi all,
Eyebrow update: As Mgm0712 has noticed, mine seem to be thinning, but still hanging on pretty well if I don't disturb them too much. They were never very thick to begin with so I've been using brown eye shadow for years to fill in. Still doing the trick. And I bought an eyebrow kit which looks like it's just going to be more brown shadow-type product but with special brushes to shape and define. Eyebrow wiglets will now be researched!
Hair story: Last week, just before my second treatment, I really noticed the hair on my head beginning to fall out, so I went to have it shaved almost bare. Now I can see the empty patches more clearly, though there is actually quite a bit still hanging on. As for the rest of me, again, I still seem to have it, but if I even gently pull on a hair, it will easily come out. I wonder if the second round will speed things up. Any ideas?
Second round went pretty much the same with a major dip in energy on the fourth day out. Just barely got out of the shower on Monday before I had to sit down, and eventually decided just to work from home. Levels have started to rise again, but I keep a water bottle and protein bar with me at all times. Keeping well hydrated is clearly a key ingredient to my feeling better rather than worse overall. Of course I need to stay pretty close to a restroom!
Neulasta Onpro: This time I had the Neulasta Onpro which also went pretty much as it was supposed to, I guess, though I was a little obsessive about checking it all day. A little bit of bone pain in the chest area for a couple of days, but not terrible. The other side effect prevention/reduction meds I used were the dexamethasone, Zofran (ondansetron), and Claritin. So grateful that I haven't had any nausea!
Ice water finger bath: As for the ice water bath for my fingers during the taxotere infusion, my nurse expressed the opinion this time that it wouldn't make any difference in whether I develop neuropathy, but that she does what the doctor tells her. I assume her opinion is based on what other patients have told her, but I went ahead with it anyway. I have total faith in these nurses, but since it couldn't hurt... However, I decided not to bother with the ice gel packs for my feet. So far, no problems with finger or toenails.
Wigs: I have chosen to stick just with hats and scarves, but I can certainly see why others would choose differently! These look really great! One of my sisters was kind enough to take a photo I texted to her of my newly shaven head and put all kinds of different hairstyles on it, the goofy kinds, of course, which was quite hilarious!
I guess that's my report. Thanks for all the good ideas and brave sharing! You all inspire me to keep plugging along...
Anne
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Thanks you guys for the Neulasta info. I go in tomorrow for my 3rd AC and shot next day so I went ahead and started my Claritin today. I sure hope it helps taking it an extra couple of days.
Piperkay- I think my much younger and hipper friend was researching hair and eyebrows for me and called them eyebrow wiglets! I think there just eyebrow wigs, but it makes me smile a little now if I think of them as wiglets bc I think a wiglet is a smaller partial hairpiece that would be way to big for an eyebrow. I could only imagine my surprise if she ordered and sent those to me. I need all the laughter I can get right now! In the future I will know to check out what she suggests a little better lol.
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Good Luck Nanomom11!!
My eyebrows are thinning this week but I pencil mine anyway because they have been thin for years.
I haven't worn my wigs yet. Just hats and scarves. I don't know if its how people will react or because I feel so uncomfortable with it on.
I feel like I am finally over the hump with the Oral Thrush and GI issues. I'm asking my MO next time for medication to prevent oral thrush. I wonder if it was because of the chemo or my glucose being high.
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Hello ladies! Going in for round 3 tomorrow. Round 2 went better than the first. No headaches but a little more fatigue. Spent the first few days sleeping a lot. Still have my eyebrows and lashes! Let my boys and husband buzz my hair 2 weeks ago and not much left of it now. Found some cute beanie hats and headscarves to wear. Waiting for my halo wig to come to wear underneath them. Like the wig pics of you ladies! I have seen the eyebrow wig pieces as well. Thinking of trying when mine are gone. Trying to stay positive through all of this and focusing on something good everyday. This journey is only temporary and we will all get thru this!! Wishing all you ladies the best with your treatments.
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Before
After with wigI’m going for my 3rd round tomorrow—still awake from steroids I’m guessing.....
I haven’t had a Neulasta shot due to high WNC count of unknown origin—not complaining due to it not sounding so fun.....
Speaking of not so fun—had major constipation last round even with tons of water— kind of nervous this round. Went and got Miralax and Milk of Magnesia for this time around.
Other weird side effects have been night sweats—wake up soaked, then cold. Still have my period so that’s kind of an annoyance. Weird headaches. Feeling like my hearing is off. Feeling like my vision is getting worse. Not sure what to make of any of this but we will see what the MO has to say tomorrow.
Anyone having an out of breath feeling easily? I have a tri-level home and going upstairs to gather laundry then downstairs to start the washer warrants heavy breathing and I need to go sit down. Things that used to come without me thinking make me so tired now. Normal?
Good luck to all! Praying for minimal side effects for all and looking forward to spring!!
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RdhJoy- love the pics. I too have noticed getting winded easier, just chalked it up to not exercising every day but maybe it’s something more. Have you tried Senna for the constipation? It is easy on the system and something you can take every day to help keep things “loose”
I thought I might still get my period but it was one spot and poof gone! No night sweats but do hear they are common. Lots and lots of headaches, but no vision or hearing issues, let us know what the MO says.As for my second treatment— it was a train wreck. Woke up to DH having hurt his leg and having to go to docs with him before chemo. It was a torn meniscus so he’s limping around, lucky for me my mom was coming up and helped out! Then I was a crying mess at chemo. First time port was accessed, last time is left accessed after surgery and my anxiety level was through the roof. They gave me Ativan this time which did help. Then they started the Adriamycin And I felt a burning sensation. That was a bad thing. They stopped everything flushed the port and scheduled me for a dye study of the port. Of course this made anxiety go back through the roof. They couldn’t schedule the study until 4pm so chemo had to be rescheduled for today. A rad nurse ( that had been with me through the testing portion so she made me feel very comfortable) came of to inspect port. Thought maybe I was feeling catheter move since swelling had gone down. That was reassuring but distressing that I may be putting everyone out for nothing. They were very good in reassuring me that better safe than sorry. Went over for test. Test was to take 10-15 minutes. Half hour later they had taken out the access needle and were telling my husband and mom that it was going to be a bit longer and what they were doing. My DH of course told the nurse I was going to be mad at her for sticking me again
They reinserted the needle and did another scan and it was not the needle but there was a narrowing of the catheter which happens sometimes with healing. Have to have something called a cathflow which they cannot do and cancer center is now closed. They have MO paged and she says we will do it at 8 in the am.So an hour and a half later I get to go home! Back up for 8 cathflow and then 11 chemo. Isn’t cancer fun?
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Ladies the breathlessness is the anemia... if you have electronic access to your blood tests you will see the correlation w RBC (red blood cells). The anemia was the only SE that got progressively worse for me. By the last chemo walking into the kitchen to make coffee, I felt breathless, and it took about 6 weeks after the last chemo to feel normal again.
Re constipation, mine was terrible until I mastered the art of fasting mimicking. Instead of OTC constipation meds, I took Magnesium citrate at night (which is good for you in other ways). I am an eater, but if you hate the SEs it is not hard to do Fasting Mimicking. For new people you can search that term on this site and look up Valter Longo at USC. Chemo Day is the middle day of the fast, whichever way you do.
I think F-M also really helped avoid a lot of the other SEs people describe. My nails were perfect throughout, no neuropathy, etc. Why?-- because a 3 day water fast (or a 5 day very low cal mimic, which is what I did) tells your healthy cells, "conserve energy" and tells your flawed cells "die." It primes the body so that when your chemo hits, your healthy cells are in self-protect mode. And the cancer is HUNGRY. When you break the fast eat nutrient dense food. The "re-build" is important because your immune system goes into high gear following the fast so you want to eat well. In the tests of FM, the cancer kill uptake was better in the calorie-deprived group. If there is no medical reason not to, maybe try it once and see? I did that -- and it converted me. The benefits to the immune system, triglycerides, etc are proven. I am still doing FM every 2 months throughout my window of recurrence (3 years) to keep my immune system on point!
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PS the doctor who developed this program theorizes that in a state of nature, human beings would NOT have eaten 3 square meals a day. There would have been many hungry days. Our bodies likely evolved to be calorie-deprived a lot of the time, much more than todays humans are. If you cannot stand not eating, even 'fasting' overnight for at least 13 hours is very helpful - if you have breakfast at 8, have dinner at 7 and then stop eating for the rest of the night.
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Mncteach - oh no, so sorry for such a horrible day! I hope things go much better next time! At least they know what the issue with your port is now and can address it. I’m a bit worried about my port for round 2. I had no problems at all the first time. But I’ll have 6 weeks between treatments. I asked the oncology nurse if I needed to have my port flushed since it would be so long, she said no, they can go “up to 6 weeks” between accessing it.
Rdhjoy, nice pic! It looks like you matched your hair color and length exactly! I also had major constipation the first time. But I wasn’t proactive and didn’t treat it until I was well into it. Next time, I’ll start with the stool softener and senna before my treatment. I definitely don’t want to experience that again! Good luck!
MyLife42 - good luck tomorrow! I got a halo hairpiece, it’s a shoulder-length bob that I can wear with any hat. I love it! It’s easier and more comfortable than my wig, I can just throw it on with a baseball cap when I’m going out. The first couple of times I wore it, it seemed to slide up in back, but I think it’s adapted to my head because it seems to fit better now. Or maybe I’m more used to it. I’ve also been looking at the eyebrow wigs. Don’t need them yet but I may try them when the time comes. I’d love to hear anyone’s experience who tries them. I’ve never worn false eyelashes but may give that a try too if I completely lose my lashes. Headcovers Unlimited (www.headcovers.com) is an awesome site for wigs, hats, eyebrow and lash options, and helpful tips.0 -
Rdhjoy - Nice pics and you would never know that is a wig. Yes, to getting out of breath easily. I thought at first there was something wrong as it happened when I went for a walk and couldn't make it 15 minutes. I was completely out of breath when I got home and had to sit down. This was after the first round. Second round same thing. I got winded from taking a shower. Having the night sweats as well. Good luck with round three tomorrow.
Mncteach - OMG! Sorry to hear about the issues with you port. Good luck this morning and I hope all goes well.
MyLife42 - Good luck with round 3!
I still have one more week of feeling good before round 3.
Miss my long hair:(
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Arrived at cancer center, some confusion as to why I was there at 8 for chemo at 11.... then more confusion when they see what looks like a kink in the catheter along with the narrowing. Doctors called, consulted, several plans made and after an hour wait it was decided to do drano and see. Got drano, it stays hooked up but I could go back home until chemo. Return and everything seems to be working well. Did chemo with little issues and am now home with feet up! Now hoping for better SE this time, have my meds all lined up and ready to serve
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Glad everything went well Mncteach.
Sitting at my desk with a mask on because my Director is here coughing up a storm in his office as he thinks he has bronchitis. Lovely. I have round three on Monday.
Hope everyone is doing well with minimal SE's.
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So, had round 3 on Friday and 4 days in doing better than last round. No aches from neulasta, no nausea or headaches, just little tired. It was nice enough to take a short walk outside yesterday, so that felt good(20 above and bundled up). Minnesota weather!! Hope everyone is doing ok!!
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You guys are closing in on/hitting the half way point! YES! It's great to get over the hump and be on the downslope!!
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@ i have had eye twitching in both cycles of TC till now. It was there for few days and then it went away..
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Hi everyone! I go in for my second round of TCHP on Friday, I was curious if anyone thinks the second round is easier than the first? I had quite a few side effects but bounced back after about a week and felt well enough to go back to work. I’m nervous about my second round though
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Ami,
I am on TCH. I thought 2nd round was bit easier, mostly because I was smarter about taking Miralax right away and didn’t get as constipated. Then 3rd round worse because I didn’t fast day before and day of infusion...turned out that did make a difference, I will fast again next cycle for sure.
So far, hemoglobin has dropped 1.5 mg each cycle. I am thinking that is responsible for exhausted feeling I’m experiencing now, start of 2nd week of third cycle. Excited to think that in 2 weeks I can say, halfway through. Previous 2 cycles I’ve felt really good 3rd week, so hope that repeats.
Good luck everyone
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Hi All,
Just sitting here in downtown Atlanta during a major thunderstorm right outside my office window. Lots of thunder and lightning, and only 44 degrees...
Anyway, I really love seeing all the before and after pics! Not only does it show that we still have the self-confidence to share our changed appearances, but it really helps to see how well some of these different choices can turn out. Kudos!
Mncteach, I think ports are great (especially when they work), but mine really freaks me out. I just can't help thinking how unnatural it is to have that thing just sitting there in my body hooked up to a major vein. Psychologically, that's been harder for me to handle at times than the hair loss, surgeries, and other indignities we all seem to be suffering. I'm glad your issue was cleared up, and all is well again!
I'm exactly in the middle between rounds 2 and 3, and had a major adverse reaction to something that showed up on my face this past weekend. Not sure if it was something I ate that caused it or maybe a lotion that I used, but my face was bright red, itchy and blotchy beginning Saturday, and is only now beginning to clear up. This is the third significant skin reaction I've had since this whole thing began, and I never really had an issue with sensitivity. Yuck.
Vgmggroup, I continue to get the eye twitching thing too. I'm also getting cytoxan and taxotere, so maybe there's something to that.
In more happy news, I received word yesterday from my genetics counselor that I am negative for the BRCA mutations! Hooray! But I do have a "variance of uncertain significance" in the NBN gene which apparently means there is something different about that gene, but the genetics lab they used can't say what it means. Could represent a higher risk of breast cancer or could be a benign change. Other genetics labs that have analyzed this change, though, have reported it as a benign change.
Hoping everyone has a good week of manageble SEs and uneventful treatments!
Anne
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hi all,
I started January 24 and I’m on round 2 of taxotere, carboplatin, herceptin & Perjeta given every 3 weeks
Glad this cheer squad exists for us.
Icross posted this in the taxotere carboplatin herceptin thread, hope that’s ok - Im having a weird chemo side effect & hoping one of you have advice! I'm managing pretty well - but I have weird gas/bubbles in my throat. Feels like I'm going to vomit, or somethimes it feels like there is vomit in my throat - but with no retching, and I dont actually vomit. Not accompanied by the usual dizzy/motion sick feelings of nausea. It won't go away. I'm taking compazine for nausea, I tried brioschi and alka seltzer and gargling with baking soda water on recommendation of onco nurses - didn't help. 🤢
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is is a form of heartburn? Like a burpy heartburn?
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It may be heartburn, I had a similar experience. Take a daily Pepcid and seem to be better this time around
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My MO had me add Nexium after my first round because I was experiencing frequent burping, some nausea and indigestion/heartburn from the steroids. She said you can develop gastritis from chemo. I did notice a difference during my second round.
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Round 3 went off today without a hitch...only had to drive there in a snowstorm. Most of the other patients had cancelled. I am going back to the shot of Neulasta instead of the Onpro (it kinda gave me the heebie jeebies worrying about all the ways it could become detached.)
As to the burping, I haven't had that but the other issue at the other end of the G-I tract after every meal. So ladylike. Not sure what can be done about it since I already take famotidine for heartburn.
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