Starting Chemo April 2016
Comments
-
I think I'm all caught up on ya'll! Post Round 3 check in: about Day 8, I started feeling myself again - positive mood, energy and happy with bouts of being silly again. So I had three days where sleeping it off was best and I was pretty miserable and upset. Round 2 fatigue and low mood lingered and that made me afraid. So I'm just happy to feel this good. Thanks for all the support during my miserable days. One positive SE that I am experiencing is gratitude and mindfulness! And I've been thinking about the quality of tolerance and perseverance. Gifts of chemo screamo. Sometimes I think "fuck the drippy nose, numb fingertips, feelings of moss on my teeth, the huge appetite, the persistent discomfort of my port...I'm pretty much cured and I'm gonna live to be a healthy 102!"
For the glutamine, my Naturopath, she has a specialty and passion around high quality supplement has me on this: Genestra Brands Amino L-Glutatmine Powder. I'd recommend getting that so you know you are getting a very good product.
Mouth bumps – After Round 1, I started using baking soda and a good quality salt with water mix it up in a small jar and rinse throughout the day. Its really helped.
Coldcapping for me is also going well…just want to share so in the future more woman can get this resource easier…the worst of the shedding is done and since round 3, hardly any hair is dropping, other than a bald spot on top which is easily covered by Toppix, I look normal and fine. My hubby has been stellar support with this and I wouldn't have persisted without him. With taxotere having some permanent hair loss for low percentage of woman, I'm really glad for this choice and that the worst for me would be a bald spot on top, I'll take that deal if I have to.
NUMB – I'm so glad for this decision, it makes a lot of sense and I'm glad that your MO is research driven. There are so many advances happening now that they are coordinating all the data too. You deserve super ease on the rest of this!
Zoziana – I thought your post on 5/31 (I'm just catching up) was so very well written and thought out. It is so individualized in how we react and just like they don't know what causes cancer, they don't know how we will react. And some of the chemicals cause cumulative effects but some don't'. Some side effects are transisent and come and go through the rounds and some are the same. Overall, for me, I feel like I'm having a pretty easy go, although I definitely have my days. This round 3, about day 8, I started to really rebound in my energy and spirit which I didn't get after round 2. Its just one day at a time and sensitive and grateful to the good days. I have weird little SEs that I just put on my mental back burner – like the itching fingertips, dry fingertips, feels like moss on my teeth. I got a few days of my fingertips tingling and numb last round and that is happening this round but I'm feeling it too will pass. BIG PICTURE is LIVING! And all those healthy lifestyle things that like you mentioned, my BS told me "that's your protective factors for healing and prevention.
TRBAllen – I'm on the same regime, you'll pull through. Round 3 for me overall was easier as by Day 8, this time, I'm back to my self pretty much. Round 2 was like easier at first but lingering fatigue and low mood persisted until the day before I did Round 3. Don't expect it to get worse as time goes by or for it to be cumulative, just expect that it will be different J. I really try to push off people's projections telling me how "well, you're doing good now but you'll be so sick as its cumulative….I know someone who…." The best MO in the world can't predict your SE's or how your rounds will go. Its just enough to go through them one at a time.
Bagger – LOL. I'm chasing you! Right behind!!! Round 3 suddenly snapped and I'm feeling my old self expect for weird things. I agree, the first week, about 2 – 3 days pretty much trying to sleep it off, then week 2 of weird things, energy comes back and mood swings up, then week 3 of NICE and then start again. AND to know each round is different. Round 2 for me lingered with fatigue and low mood and I'm just so happy that isn't happening this time! YAY! Next week, I am off for a trip for my daughter's graduation for her MS in Biology in eastern Washington. I'm so grateful that I'm getting to do all these normal life events!!!
NJR – you describe it so well…sawdust cakes it is! So glad to have the taste of coffee again.
Uniboob – Hahaha! Have fun with the snakes! My daughter is a herpetologist and when we hike, she finds snakes everywhere and just picks them up and identifies them. So fun….Isnt it great to go to normal life functions? I'm so grateful for this. It's the little things now that just give me so much gratitude. Yesterday I had a lunch hour without a medical appointment and without fatigue – I just so enjoyed going to get something to eat and sitting in my car in the nice weather thinking about my one hour of freedom.
Positivepower – HURRAY!!!!! Congrats on completing that! My Round 3 is going well. Have 3 more and then DONE with all chemo. Just Herceptin for 9 more months but only every 3 weeks – I'll feel so free!
KSusan – thanks so much! You mean a lot to us!
0 -
Numb: I only got the iv meds they gave me the day of first taxol infusion (decadron, benadryl and Kytel sp?). I have had no nausea or go signs. I was a little tired today (day 2) but not nearly as bad as with AC. I am taking glutamine 10 gm q 8 hours (seeking health brand ordered off of amazon) and a B complex. Day 2 and besides a little fatigue the tips of my fingers are sore. My hair is starting to grow in but is like peach fuzz. Kind of feel like a chia pet. Hope everyone has a great weekend. I think it is going to rain here in Maine.
0 -
Thanks for all the advice on Taxol medications. It is great to know that any of you on Taxol find it easier than AC and wonderful to know that the hair is staring to grow back. Mine is like a peach fuzz on top of my head at the moment but I didn't shave my head, it is not that it has grown. I will be doing Taxol next Thursday after I get my port. Fingers crossed that all goes well.
0 -
Numb - good luck with your port, I hope it goes well and easy for you. And your first Taxol. We'll be thinking of you and waiting to hear how you do.
0 -
ANNIEKAJA11 - thanks Annie, glad to hear you are feeling good again. The thing is that the bad days don't last, even though it is hard to realize that when you are going through them. I am having a great weekend, but apprehensive about having to do the Taxol on Thursday. It just seems that it is a pity that just when you are feeling good you have to have another round.
0 -
Numb - I hope your Taxol is like mine. It's not "perfect" but it's soo much better than AC. Besides being a bit more tired than normal, I had the ultra dry hands for a few days and could not drink enough water. But that was over pretty much with 3-4 days.
0 -
CJSHARMA - So glad you are finding Taxol easier than AC because I am hoping for that too. So are Taxol side effects cumulative and how tired do you get on Taxol ? I hope I have enough days in the week to get some good days as I am getting weekly Taxol and won't have much time to recuperate before each round. At least with AC every 3 weeks you do get a good week to ten days before the next round.
I am getting scared of getting the port in now, there is always something. So sick of this cancer thing.
0 -
Numb - the effects are cumulative, but seriously, this first round (so we know it can get worse) was like a breath of fresh air. Yeah, I had some crabby hands, and felt rather liked a dried husk - but over all, I felt good. I was doing some pretty hard core workouts. I did over do it, so while I had a little fatigue - I'm not sure how much is chemo related and how much was over doing it. But even my fatigue was so much lighter. More like a bad night's sleep than the flu.
0 -
numb: the port is really a minor procedure and makes the chemo and frequent blood draws so much easier. Any procedure is nerve wracking, but once you are on the other side it will be a blessing. I agree with CJ that the taxol is easier than the AC and the recovery is quicker. I had my first one on Friday and was functioning almost normally the entire weekend. About a tenth of the fatigue that I had with AC and no brain fog! I was able to do a good workout at the gym today and feel really good. As we have read on this thread, some people have a hard time with it and I may be one of them in the future, but I am taking it a day at a time and counting my blessings for feeling well again.
0 -
Good to hear from you ladies about Taxol easier than AC. I had the last dose of AC last Thursday and still suffering from SE of the chemo and Neulasta. I did not feel like eating, body aching, my chest pressure. I can't wait to move on to something else. Has anyone grow out their hair during Taxol? My OC said I won't need to have Neulasta or steroid with Taxol. I wonder how any of you ladies did with the low wbc. Any inputs?
0 -
CJSHARMA - thanks for that info. I am expecting Taxol to be easier at this stage, it has to be. Good to hear the fatigue is lighter.
KATJADYM - thanks for that encouragement on the port. I needed to hear it is a minor procedure. I had been working myself up for a disaster, but once this procedure is over and done with I will thaw out. I will be doing my Taxols on a Friday too, the first one is this Thursday just because I will be in the hospital this Thursday and they said they will do it a day earlier but next week it will be a Friday, so good to know that the weekends are not a washout after getting it on a Friday.
HOUSTON - I can relate to your chest pressure. I felt it on my heart but after about a week it woud disappear and I sure hope that Taxol does not produce this side effect. I thought everyone had to have a steroid the night before Taxol to prevent allergies but I was told that I wouldn't need Neulasta but like you I would not like to have a low white cell count and would prefer to take the Neuasta, but I think that if you get the Taxol every week the timing would be out for a Neulasta shot as Neulasta should not be given within 14 days before or 24 hours after you receive chemotherapy. So that must be why the weekly Taxol people don't get the shot. My white cells got very low after each AC so don't know how I will fare out with the Taxol, so yes that's an interesting question alright.
0 -
I haven't been contributing much to this thread, because my MMM chemo hasn't had many side effects so far. Everything I eat tastes like greasy cardboard, and half of my hair fell out, but otherwise not too bad. No GI effects other than a bit of heartburn (Omeprazole stops that), and long afternoon naps are a way of life.
I have reached the half way point (3 down, 3 to go) so i had a CT this morning to check progress. As is usual in my bizarre life, it all turned to custard when they accessed my port for the IV contrast. For the second time, the line came off and I got soaked in the sticky liquid. They were suitably apologetic and embarrassed (it was the same team who did the same thing a few scans ago), but it's not so funny any more.
I'm getting sick of weird unexplained crap happening to me, nothing ever goes normally for me. I could write a book on all the mistakes and bizarre crap that has happened in this journey. In fact I have already started on it - but I'm not sure if it would be a comedy or a tragedy!
0 -
Suems - I even made pizza once from scratch, crusts and all -- and it stil tasted like cardboard. Not bothering with that again until my buds are back. And I'm having some weird unexplained crap too.
My infusion of TCHP (with steroids) was on Friday, so I'm usually pretty good until Sunday when the steroids wear off. So Sunday night, I wake up and go to the bathroom and black out completely for the first time in my life. I came to on the floor, tried to get up and fell backwards with a yell. That woke husband who helped me back into bed. Let's see, I sprained my ankle for the first time and have a few new bumps and bruises.
I had the ankle x-rayed yesterday and told my MO's nurse all about it, because myMO is on vacation this week. Yes, I ate enough. Yes, I drank enough.
So last night, I woke my husband before heading to the bathroom. He was able to get me in a chair when the same thing started happening. I didn't pass out this time, but had major cold sweats and some dry heaves.
I think they're going to have to change something for my next infusion, because this is very worrying. I'll keep you guys posted but won't be able to talk to my doc until next week.
0 -
Bagger - are you on any narcotics? After surgery I passed out cold (seizures, etc.) on 2 different prescriptions. Turns out they cause my already low blood pressure to crash. Sounded familiar... Sweats, nausea, dizzy, ringing ears, etc.
It's very scary, I'm so sorry it happened. Glad your husband was there!!
-Keely
0 -
Bagger, how awful. Are you dehydrated? Did they do blood work? Maybe let them know it happened again. Seems like they should be looking for a reason. Good luck and let us know
0 -
Bagger - goodnees that's terrifying! I would actually push to speak to another doctor. My first thought is that you have low blood sugar, like Clark Blue. Do you get your glucose levels checks before your treatments? It can be a side effect of chemo. May keep some Gatoraid by the bed and sip some before you use the restroom?
0 -
Bagger....do you have a nurses line you can call? I would track someone down!
A note:
As far as steroids and taxol, I get them with my infusion as part of my premeds. Taxol is highly allergenic. It's why they do your first infusion so slowly incase you have a major reaction. The amount I get has been cut back a bit because my appetite has been voracious, but I still get them.
About Nuprin or Neulasta. I have been "threatened" with a shot when I came in and my neutrophil count was borderline. I have blood tests run the morning of infusion and the number has to be over 1000. I was 1070. If you are under 1000, they won't give you chemo. I begged for another week and my count came up. My mo said I had a 50/50 chance of it rebounding. It did.
Anyway, yes, you can get nuprin while on taxol and if your counts drop they will give it to you.
"Neutrophil count: It is derived by multiplying the WBC count times the percent of neutrophils in the differential WBC count. The percent of neutrophils consists of the segmented (fully mature) neutrophils) + the bands (almost mature neutrophils). The normal range for the ANC = 1.5 to 8.0 (1,500 to 8,000/mm3)." -
Hope everyone is having a great week!
0 -
Bagger- That's very scary experience. Glad you're OK.
Numb - when you feel chest pressure while on AC did Dr recommend you to do anything for relief? I felt like mine bothered more the fourth dose. When I sleep it gets better or exercise, but at same time I have these bone pain. I read that vitamin C, E help with heart toxicity. Does anyone take supplements while on chemo? My OC only let me take vitamin D but I wanted to take something for my heart. It's scary the way it feels now and knowing it gets worse later.
0 -
HOUSTON2016 - I was told to take a Diazepam/Valium to relax the muscles. I found that when I lay down in bed it relieved it but the minute I got out of bed it came back again. I was confined to bed for over 8 days on my 3rd round of AC and eventually had to go to hospital. I had an ECG when I got there and my heart was fine. The symptom usually goes away after a week.
0 -
Houston2016: Exercise seems to be protective of the heart.
0 -
Bagger, I'm on THCP too and felt like I was going to pass out while in the bathroom - lighteaded, dizzy, hot in the face. However for me it passed and I didn't actually faint. I've had this happen to me (actually passing out) well before chemo a couple times (years ago) It was usually the result of dehydration. I know perjeta can be rough in the GI tract and causing extreme diarrhe and dehydration. Make sure you're getting enough to drink and if you're drinking a lot of water, make sure your getting enough salt and electrolytes. Gatorade, soup, Applejuice in case ita blood sugar related. I would definitely ask to speak with another dr whole yours is on vacation. They can bring you in and give you IV fluids. Hang in there and take care!
0 -
I will be going for my 3rd AC on June 15th and I still have patches of hair on my head. Anyone else?
0 -
Bagger: These sound like low blood pressure symptoms to me (I've had similar) and of course that can be aggravated by dehydration (maybe you can't get enough fluids because you have been sleeping, so IV fluids might help.) I would definitely consult with a doctor as you don't want to fall and hit your head....I hope it improves.
0 -
Houston2016: The pressure in your chest is usually related to the neulasta injection causing your major bone marrow stores to kick out lots of white blood cells. That causes a dull deep pain in your sternum (center of chest). I found this out after my 3rd AC when I went to the emergency room for chest pain. Full workup and heart was fine. MO told me after the fact. It lasts from 3-5 days and then dissipates. Many people find that claritin taken before neulasta injection and a few days after helps. It dulled my discomfort with my final AC. Hope this helps.
Bagger: sorry you had two scary episodes. Very likely a blood pressure issue. I find that I get very shaky and light headed with chemo. Staying hydrated and eating at least a little bit every hour or two helps. I slept with bananas by my bed and would eat one if I woke in the middle of the night. Also put coconut water in my my water to give electrolytes and a bit of glucose. Can't stand the way coconut water tastes straight, but it is actually very good diluted. Hope the episodes stop.
0 -
6 also. So I tried to do some stretches and walk for 30 minutes. I also found laying down and put my legs up that helps.
0 -
Good Morning Everyone!
I just want to start by saying I love this board! I am going in this morning for Round 3 of 4 of TC. So far, I have done very well, and I am excited to be almost there. I have to stop myself sometimes from looking too far ahead and just focus on the NOW. I am embracing the strength and encouragement I see here and for those of you that are just beginning, I encourage you to do so, as well. Sending love and light to all of you this morning on this journey!
0 -
Final chemo tomorrow!!!! OMG I can't believe it went so fast, even though at times it felt like time had stopped. I am incredibly nervous of this round, as the SE on the last were so bad, but Im hoping for the best and just keep focusing on the light at the end of the tunnel
0 -
Cody - that is AWESOME! Congrats! I'm so excited for you! I have 3 more rounds, but one is tomorrow, so after that 2 more rounds.
Desi - happy you're here! Welcome! Almost done.
0 -
Hooray Cody. I hope this round is no worse so you can get right on to the feeling better.
Thanks for all the support. I did see another Oncologist on Monday along with the nurses. So many questions about what I ate and drank. Seriously, it's not that. Also I don't get diarrhea, only constipation, even with Perjeta. I was okay last night and didn't have any dizziness, and as I heal and move away from the infusion I think I won't have any more problems. I will see my MO next Wednesday and talk to her about the next infusion. We'll see
0 -
Cody: so excited about your last chemo! Huge milestone. Congrats.
0
