Starting Chemo September 2015; join us!
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My counts finally dropped low enough I am feeling wiped out tired. My Doctor says if HGB gets to 8 then They will do a transfusion. I don't see my Iron on the blood report but the dietician told me that when your counts are low it usually doesn't mean Anemia with Chemo. I ask my MO what I could do to get my counts up and he said "stop Chemo, but we can't do that so In the meantime don't lose weight and don't get sick". So I have one more cycle left on the 17th. Then I need to get my counts up for Surgery.
RBC = 2.75
HGB = 9.5
HCT = 27.3
My husband and I are avid backpackers and hikers.The two of us have been together for 20 years and we are just the best hiking companions. Over the years we usually end up on a trail having hiked out to far and use our head lamps to hike out. At this point we both are tired and we get a little quiet but we aren't complainers we just keep our head down on the trail and grind out the last few miles. Then we usually eat some fantastic meal ( everything tastes fantastic after a long hike). The hike out is long but its worth it.
I am just sacked right now. I am six months in as well and just dog tired my husband looked at me the other day and was worried. I said "Don't worry babe. I am just hiking out! " A smile spread across his whole face. I keep saying this to myself. I even wore my favorite pair of purple hiking boots today to cheer me on.
My family loves to bike to the ice cream shop and my bike is just too hard on my chest to peddle right now. My husband went out and got me a baby blue cruiser with high handlebars. We found it at our neighbors yard sale and its perfect and darling. I smiled all the way to the ice cream shop today. The best part... I could actually taste the ice cream today.
Now don't ask about the state of my house, Everyday I try to do at least one batch of laundry, load the dishwasher, and one cleaning chore. Then everyone else pitches in to keep us above water. Well this week It just didn't happen.
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Im having my first tax round on Thursday the change in regime is daunting but exciting too because I am getting closer to the end of chemotherapy. Ive had a weekend that I felt positive. The week that has passed I exercised every day sometimes twice....mixed it up long walks, weight work and even three kms of interval jogging running. I thought my heart was going to jump out of my chest it was hard...I pushed through the fatigue. The biggest benefit I think is the mental aspect. I think thats why I feel so positive. Last cycle I didnt exercise as much and I felt low a lot. I hope I have the strength to continue and I hope I can motivate others to try I really think it helps. Definitely helps constipation. I love you ladies thanks for posting the good, the bad and the ugly it has been and Im sure will contine to be the best therapy. On with the good fight.
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Minnisota Lisa, it was a fine pig, and I could even taste some of it! I'm tired, but glad I went.
Exercise Guru, I miss riding my bike. Bike + hemorrhoids = NO! But I think my backside is almost healed enough to give it a shot
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aww thanks southern. I was roasting in the store and was tired of sweating non stop. Why do stores feel the need to roast/toast shoppers? It did not make me want to shop for the birthday present I was looking for or even start to holiday shop.
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Lindy-- sorry to hear about your cold. Last thing you need right now.
Shopgal -- Great story. Good for you going topless in public. I hardly do it at home. You are brave.
Would love to hear how you both are doing post DD Taxol. End of day 3 for me is a funny feeling tongue (kinda numb?) and generally tired. No nausea and very slight muscle aches. Food not tasty-- could be left over AC effects, too. I can live with this but fear more is ahead as it accumulates.
Blessings and comfort to all.
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Shelly I feel better today; day 10. I just have some neuropathy in my left arm but that can be contributed to an old neck/nerve injury. I had no appetite and taste for food since infusion. I do have slight tingling each morning in my hands and feet that I take b vitamins for which helps. I did have
a lot of big c last week that turned into little d yesterday and today. And more bloated due to steroids. Neulesta was super fun as always last week. I do have more energy than on AC and can actually drink water again without it tasting like metal. And like many have fun times at nite sleeping. Hope that helps you to compare notes.0 -
Oh- one more thing. My hemoglobin was 8.8 on Thurs. My doc didn't seemed worried. I am not feeling especially tired -beyond the expected. She said if it drops below 8 they would consider a transfusion. She said she hopes to avoid that. Anyway, I talked to the infusion nurse more about it. She said it's really hard to raise your RBC during chemo because it takes so long for your body to produce them. Said a lot of patients attempt to eat more iron as it at least makes them feel as though they are doing something. I juiced today with a lot of spinach. Likely not to help my count but it did make me feel better.
I see that your counts are so much better than mine. I will commence worrying.
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Thanks Shopgal. So helpful to hear from you. Fingers crossed for a good round 2 coming up for you.
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Shelly..it's day 3 of first taxol. Also neulasta day this afternoon. Very painful joints today so tylenol #3's were required. Pain is mostly in the hips. I had spiked a temp that didn't go too high but I'm still uncomfortable. The tingling has subsided from last night so I'm grateful for that. DH picked up the glucosamine and B6 so I've started that. No nausea, thank goodness and the tongue thing happened to me too earlier today.
Let's see what tomorrow brings.
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Hi Southerncharm Round three totally wiped me out for three days did not get out of bed. After the initial three day wipe out I also feel tired all the time. I find the fatigue very distressing I always had so much energy. The exercise is nowhere near the intensity I use to be able to do but its better than none. If possible try and do a little exercise it helps. Im also stubborn Im not giving in to this crappy situation.
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That is what I should be doing right now but I am having pre-chemo nausea. Today a friend from church took me out to buy a wig I had seen from the "hood" wig and hair shop. I had a really hard time with this because my friend has many other people to worry about. This cycle has been the hardest yet to recover from: unrelenting nausea, big C and small d, bouts of mind numbing depression, mouth sores, and bloody heartburn, among the neulasta stuff. She then took me out to lunch which I could only eat a part of but what happened at the diner just brought it all home. Both the owner of the diner and the waitress recognized I had lost tons of weight and gave me the "cancer patient" look. The waitress hugs me in front of a busy dining room and says loud enough for people to hear, " I will pray for you- you will get better." I have lost chunks of my hair and the rest of my hair is plastered against my scalp trying valiantly to hold on but A/C #3 is on the horizon for Tuesday. I feel like a person walking to the firing squad. I know it is coming, it won't be pleasant and there is suffering involved. I am scheduled to have lunch on Friday with my old boss on Friday but I doubt highly that I will be up to even going to work after A/C #3. My temp job is going to yell at me if I can't get things done super quickly and this last chemo I had to have not only extra fluid but an extra Aloxi shot to get me through the week. Not that I could eat or drink anything but it did keep the nausea down to only 8-9 vomiting sessions a day.Southern Charm- I wonder what I did so wrong to deserve to suffer so much. My cousins have told me that they don't want me come to Thanksgiving (I wasn't bringing food 2 days after A/C#4) because they don't want me to "bring down" the happiness of having my married cousin and his wife here for the first time. I feel the empty spots on my scalp and fear what will happen after A/C#3. Everyone here says it will grow back. It just feels hard for me to fathom being bald. The fatigue and chemo brain frighten me because I have so much to do and this is the time I need to really put in the hours to catch up with the bills. I am thinking about blowing my budget on fajitas the Monday night before chemo and going out to a buffet for Thanksgiving if I feel up to it. I know I'll have n&v both times but I just feel like I don't want to be alone.
Cinque- I took the dog down the street for his potty walk and lost my breath on the way home. My dog was depressed because he thought we were going for a walk around the block. I wish I had your energy.
Tessu - I hope you are feeling better. Please check in. I miss you.
For all the rest of you ladies, I have to be up for church in a couple of hours so I guess I should try to get some sleep.
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Dear Grey, holy crap I hate your awful insensitive cousins!!! And anyone else's relatives/coworkers/supposed friends who say stay away, your BC is depressing me, grrrrrr! I am so sorry you are having such a rough ride with too many side effects (((((hugs)))) but glad you are getting the treatment to help get rid of this BC. Every chemo round seems to be different; here's hoping Tuesday's dose will be much easier on you.
Sorry I haven't posted for awhile. Have been trying, only partially successfully, to get help with the increasing painful lymphedema swelling in my hand, fingers, and chest wall (arm, too, but if that were the only place, it would be easier to live with). I was worried that oncologists here only check heart function before chemo then after the entire course, whereas it seems in the States women on Herceptin are followed much more closely. So I went to a private cardiologist a Friday. My MOs said no pulse-raising or sweat-producing exercise during chemo, maybe because of my age, maybe because my autoimmune vasculitis hit my heart a decade ago? Granted most of the time SEs have had me on my knees, and unable to do more than walk my sweet geriatric dog. However, right now, the last days before the next dose, I feel almost human. I am so happy my cardiologist gave the green light to use our exercise bike carefully, on light resistance. So Fri and Sat I put in 30 min, Nothing Bad Happened, and I was able to sleep without even melatonin. Also, my (unmedicated during chemo) ADHD "squirrels" are giving me some periods of peace. IMO WIN, big time
Because next Thursday I get a totally different combination of chemo drugs (CEF) I am having trouble controlling anxiety, but at least am no longer dumping on myself for being scared. I can relate to your feeling of voluntarily stepping in front of a firing squad
Grey, may your Tuesday chemo be so easy you'll think they gave you only saline. Same for everybody else getting dosed in the next few days.
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Exercise_guru - I love "Just hiking out" - what a fantastic attitude and a great mental image. We're all exerting ourselves to the max for a great eventual payoff. Thanks for that.
grey and tessu - Great to hear from each of you! You are both in my thoughts often.
grey - Your cousins' behavior is horrid. This is all hard enough as it is. I love your fajita and buffet ideas - do fun things for yourself to power through this. You are strong and you will make it through this.
tessu - Good for you for getting your heart checked. I also have an autoimmune disorder and my MO pays no attention to it. (I mentioned it early on to her and got a shrug.)
I share your anxiety going into new chemo. Mine will be low-dose weekly Taxol starting Nov 17 and it's hard not to lose sleep over it. Exercise does seem to help for both sleep and anxiety.
Wishing everyone a lovely Sunday with no SEs and plenty of R&R to ready you for what you will conquer next week. xoxo
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Good morning to all:
My SEs continue to be relatively mild, although I am feeling very fatigued. Yesterday i didn't feel like getting off the couch much, and (unusual for me, even during chemo) I had almost no appetite. No GI track issues or nausea, food just didn't appeal. It doesn't taste as bad as it did last week, it just doesn't taste good enough to be worth the energy to eat. Other than ice cream. I can still eat ice cream. So, I finally gave up and went to bed at 7:30. I did sleep almost ten hours, but still feel tired this am....
Tessu and Grey, it is great to hear from you. Hang in there. Sending ((((((hugs))))). Your cousins are awful, Grey. I felt a bit of that from some of my family regarding Thanksgiving (although it was more subtle). But, regardless, it sucks. Shop gal, you are inspirational. I don't think I could go bald, but I'd like to. At least it is getting cool enough that I feel the need for a cap when I am outdoors. But I hate the pity looks.
Special hugs to those started new regimens this week. You are all incredible, strong women and will get through this!
Octogirl
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Dearest Grey I wish I could take all your suffering away. Nobody understands unless they go through it. Darling cut these negative horrible relatives out of your life you dont need the added stress. I dont put up with much crap any more. Im glad you have a dog truly mans best friend keep trying to walk him even a little way will do you both good. I wish I could give you something to make you feel better..please try and eat something you need to fuel your body and drink water. I was dreading my third round and it was my worst round ever. Going into my fourth on Thursday and Im going in scared yes but also more positive because Grey we need this treatment. Dont be dragged down by negative thoughts and people easier said than done I know...but please try. Take care xxx
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Annie you're obsessed with poo
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Glucosamine helps with neuropathy?
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Artista - After reading the comments here, I asked my MO about supplements in prep for starting Taxol Nov 17. She said there is no hard evidence supplements help with Taxol SEs, but that a B vitamin with B6 "couldn't hurt." I figure same goes for glucosamine. I'll start taking both one week before treatment.
(Side note: Interesting to me how our practices vary. At mine, if your labs are in range (even if low), they pass you through to the next chemo round - their philosophy seems to be to ram you through treatment unless your numbers are dire. I get the impression they're firm about coaching you through SEs, too, to "git er done.")
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Cinque, I'll be thinking of you on the other side of the planet when they hook up my 4th round on Thursday (I'm in Finland). I'm a bit scared, too, because these last three rounds will be with a different combination of drugs, but agree with you, there's no escaping it. Wish the senior oncologist hadn't explained my treatment as "first three rounds of easy stuff, then three of really rough chemo" because the SEs from the first three had me on my knees
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Annie, that's hysterical. I don't think it occurred to any of us that the whole "in sickness and in health" thing would be quite so scatalogical.
Minnesota Lisa, our MOs seem similar. I think that to get the full benefit of dose dense, they have to just ram us through treatment on schedule.
Tessu, hang in there! Everyone reacts differently, and you may find that this next chemo won't be so bad. Several of us have done better than we thought on what our MOs called "the bad chemo."
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Ya for everyone freaking out cuz the doc said "doooom" really just wait and see. As we have all seen it's a mixed bag and you might breeze through or it might fall somewhere in the middle. One day at a time ladies and you can conquer anything.
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Southern. I completely identify with your description of looking in the mirror and not recognizing yourself or not identifying with being called a cancer patient. It's been really hard and I still don't think I've accepted it.
Yesterday I spent the afternoon and evening with my close girlfriends. It was the first time I've shown anyone besides my husband my bare head. I was really uncomfortable, even with the friends I'm closest with. I just don't feel like me. Like I don't want people to see it because I'm going to kick cancers ass and this is all going to be a distant memory. Why have that image in their heads?
I don't know if that makes any sense. I feel like I'm temporarily not myself.
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Cinque that's what my husband said. He's now started describing to me all his bowel movements. He said he figured this was the new phase of our marriage. It's like we're in our 80's. I'll be glad when my poor body can remain quiet and private again. I'm sure he will too.
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Scatalogical...Awesome word of the day!
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Minnesota Lisa, isn't that supposed to be l-glutamine and not glucosamine? Or have I been reading it wrong (chemo brain)? And aren't you getting the lower-dose weekly Taxol and not the DD?
I get my third weekly dose of Taxol tomorrow morning and so far the primary SEs are still fatigue and the damn constant runny eyes, which continue to drive me crazy, and likely contribute to my feeling tired all the time. The first week I blamed it on residual AC, but now I fear that this will continue for the next 10 weeks. I'm still hoping my MO will cut the doses down to 10 or 11 instead of 12 weeks. She mentioned that she might do so if I start to develop neuropathy. I'm going to ask the nurse about the B supplements tomorrow since I don't see the MO again until the 16th.
They haven't been giving me my blood results but I'm going to ask about that tomorrow.
Best wishes to everyone!
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It is L-glutamine. I just went back and read the recommendations for neuropathy.
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luzeelu and Artista - Thank you for the correction, I appreciate it. I'll buy L-glutamine.
luzeelu - Thanks also for the report from the field on weekly Taxol. Yes, I am getting low-dose, weekly Taxol and am heartened that you're mostly plagued by runny eyes and fatigue. I know that sounds weird. But compared to the worst of A/C SEs, I think I could hack those..!
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Annie Just spot on!
Thank you ladies for allowing me to share my diary of D/C with you. My dear family is a bit overwhelmed at my lack of Candor. Only on this thread would we vote as to whether we prefer D to C and the merit of each in explicit detail. My girlfriends I go to coffee with would certainly not enjoy this avenue of conversation. I am not sure we are enjoying it either but how cool are you guys for helping me laugh through this sucky suckity time.
For me I am just trying to find any little thing in my day, any little ritual or moment where I feel like myself. something to center on and cheer myself up to keep going. I remind myself " you are on a journey. this is not your permanent reality. you will get through this"
I want to read and catch and post on everyone but my eyes are too blurry today. the sun is out for a short time so I am going to try to get some sunshine. I might try to give my dog a little walk. I haven't been exercising much lately.
I hope my Chemosisters on this thread have a something positive happen today to lift them up and keep them going. Wishing you all some sweet moments today to sustain you.
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