Starting Chemo April 2016
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Happy Saturday everyone. And have fun on your 5k CJSharma.
This is a bit of a post/rant.
My mom has been doing quite well with her treatments. She is on her 2nd AC and she is such a champ. She actually seems more relaxed and is enjoying life more now than when she was at work full-time (silver lining). She's staying active and we're doing lots of renovation projects and fun things together. We're taking one day at a time but I think she kind of knows the flow of everything and she really appreciates all the great days she has been having. (The onc also said her tumour has shrunk by quite a bit after her first AC and my mom has mentioned numerous times that she feels it has shrunk even more- so I guess that helps her positive moods)
Rant- So, a fellow nurse "friend" reached out to me since her mom went through the same treatment plan. Her mom is now half way through her radiation treatment. At first talking to this girl helped but over time I realized she only made me feel more anxious and fearful. The last time I talked to her she didn't waste a second to tell me "to get ready for really rough days and that her mom to had it easy at first but then she was knocked completely off her feet". Which was a total lie. Before my mom's first AC, she told me her mom had a horrible time with her first one and that it took her a long time to bounce back. So, I was so anxious and fearful of what to expect. I had no idea that some people are able to dodge and manage the side effects and to actually still continue on enjoying life. Whenever I mention to her how my mom is doing she always tries to throw a curve ball my way. I thought it was just her trying to help but I don't know what she's trying to do.
I was talking to someone else whose mom also was recently diagnosed. Her situation was different... She apparently only had to have a lumpectomy and that was it.. "Cancer free". When I told him my mom would need chemotherapy first he reacted with "oh no!" almost as if he saw a ghost and told me to ask the oncologist to see what else they can do since chemotherapy is so hard on the body. He continued to go on and on about how hard and devastating chemo is on the body. I told him it's going to prolong and save my mom's life and I've stopped talking to that idiot since.
Has anyone else gone through this from people?
I can't stand people. Cats are so much better
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weRwarriors - well, I'm on my last and final round of AC and I'm about to walk a 5k. Every journey through this is different. Don't let the nay sayers take you or your mom down. I hear all sorts of things. I just say "Thank you." and go on with my life. I know chemo is the right option for me. It's not easy, but it is the right option. Hugs...
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5k went well! I walked the dogs around the block and my tummy protested a bit, so, when I came back I loaded up on the anti-nausea meds, including a Pepcid AC. Felt great but we did not break any speed records - just a nice casual walk. I live in an old section of town, so the walk was fun because we got to look at all of the houses. I never tire of it, honestly. My friend walked with me and we just had a nice conversation going. She is also in animal rescue, and a runner, so we talked about everything.
The 5k was to support the locals schools, and there were lots of families and kids out. Happy Saturday everyone! Hope everyone is feeling good!
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CJSharma that is so awesome
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weRwarriors... I suggest just detaching from those relationships, people, or pieces of "advice" that are either uninformed, or not helpful. Negativity is not what you need. And yet, everyone is different and even on the same chemo, each individual may experience it differently. So what one person has happen may be completely valid, and may, or may not, happen to your mom.
One thing I think that is overall important is for the cancer patient and the family to keep as positive and supportive an attitude as possible. It certainly helps me. That means that though I still can't plan things with precision--because day to day varies so much , as I am on a weekly chemo cycle right now--I still try to plan.
And when things don't work out as I planned, I try to revise and do the best I can. For example, I had chemo yesterday. Usually Friday night and Sat. are very good days for me (and Sun night-Tues are not). I went to a classical concert last might (husb's. friend was singing at a local Catholic mission church-a gorgeous space), but started feeling unwell halfway through .So we left at intermission. But still delighted I saw part of the performance and enjoyed the beauty. Today, I had a 4 mile walk planned with a friend in local hills--walks and hikes (in nature or cities) are my favorite thing to do of practically everything. But I had to cancel, because last night I was up in the middle of the night for hours with 8 rounds of diarrhea . I was disappointed. But this friend is a good one, and understood, and has offered an afternoon neighborhood stroll if I feel up for it (I don't think I will), or a reschedule for tomorrow (I am hopeful.) Meanwhile, my husband has suggested a trip to the garden store to purchase a few plants to place in the back garden in an area I've wanted to plant for a bit. So that will be my outing...though we are waiting to see if and when I can leave the house (have just done a small "meal" test...). If I can't, then the plan is to enjoy sitting outside and looking at garden books and online and planning a small garden area redo (it has gotten a bit wild in a corner..). And then later, pick a new series to start watching on TV.
So I guess what I am saying is I love that you and your mom are trying to make the best of each day--whatever the best can be that day. Frankly, I think that is what "good living" is all about.
And I try to "give" to others , in some way, each day. Even if it is just a small comment to a store clerk who has been helpful. Or thanks in my spiritual life. I try to be grateful for the good I do have. Here's to a good weekend and upcoming week for you and your mom!
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Zoziana, great advice- particularly on ignoring the negative and giving back in some way each day. I agre some times, chemo teaches us a lesson of letting go and taking each day as it comes.
WeRwarriors : I have to say sometimes people's reactions are from ignorance. If I think back to just before my diagnosis, I was fairly ignorant about chemo and thought it was a period of gloom/doom and sickness. It's only forums like these and past threads that helped educate me. Really someone who has been through the experience is the only one who knows and it is different for everyone.
Cj you rock congrats on the 5 k. I started with THp followed by the AC which is coming after. I've been quiet scared of AC but seeing you and how all the others have handled it I'm much calmer.
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Zoziana, thank you. Very well said
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ZOZIANA - That sounds dreadful, eight rounds of diarrhoea, you must be feeling drained. Did you take Imodium or does it even work at this stage? I sure hope you are over all that today.
CJSHARMA - thanks for letting me know you also get those bowel symptoms that I have been getting all this week, and while I don't wish it on you it makes me feel that at least it is normal as I am not the only one getting this. The upside is that I lost 4 lbs from it all. You are great doing that walk and I sure hope you have a good week. Looking forward to hearing how the Taxol goes for you.
WERWARRIORS - good that your Mom is doing well.
GRACIETOO - Are you enjoying the good weather, it lifts the spirit doesn't it ?
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Zo - that was lovely. You have such a large heart and spirit.
Postiive - Hydrate, hydrate, hydrate. AC is not fun, but hydration can help you stay on top of the side effects. I learned this the hard way - so please, learn from my fail.
Had to refill my Zofran this morning. Nothing else, just that one. Odd. I'm still feeling pretty good, but I'm still on all the drugs. The real test will be tomorrow after all of the drugs wear off. I'm thinking of doing some barre and some kickboxing, if I can handle it (it sounds great while sitting on the sofa, but sometimes when I get up to do, it's too much). This round of cravings seems to be Italian based. I made a healthy Eggplant Parmesan (it's a Google doc - so nothing fancy) for tonight and for lunches.
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cjsharma - any recommendation on light exercise routine available online? Walk and walk and do some steps. Don't want to be in gym yet
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JLB - There are a ton of workouts on Youtube. You can search for Zumba classes - some are lower key, some more intense. Jessica Smith has some great lower key workouts including some light weights. She does a lot of walking workouts, and her little French bulldog peanut features in many. She has a youtube channel. I also like Hamelin D'abell (many workouts also on Youtube). He has some cardio tone using 2 to 3 pound weights that could be done with no weights as well. Les Mills On Demand has a 10 day free trial and some great body flow workouts that are nice. And I love Combat for when I'm feeling more adventurous. I also really like the CXWorks as they hit everything, but especially the core. I'm also a fan of Tracy Anderson - her workouts are deceptive - they look easy but are not exactly. She has a ton on Youtube as well. Fe Fit has streaming but there is a cost involved (they used to have a free 30 day trial). There is a lot of mommy talk, but the workouts are sound, using light weights and include upper, lower, total body, and barre.
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thank you, Cjsharma. You are such a wonderful resource, I'll start light ones after walking. My next round is on the 19th, wish me luck
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I am so comforted reading these posts. They make me feel connected. I meet with my Onocologist tomorrow so I'll hopefully leave with a plan and a time line. I'm recoverying well from my bmx, I'm just tired. Went out and did some errands Friday and I was whipped! Slept and rested all day Saturday!
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Heathet - glad we are able to help you! Amazing how surgery can wear you out, isn't it? Thinking of you!
I have a new mantra. You know how with technology the saying goes "When in doubt reboot?" Mine is "When in doubt hydrate." I cannot believe the difference I feel when I'm very well hydrated. Yeah, it's multiple trips to the restroom at night, but I'll deal with that if I can keep some of the worst symptoms of chemo and the other drugs at bay.
JLB - I tend to stick to cardio the week after chemo, then I add weights the second week. For some reason, if I lift, I get really worn out, but cardio does not have the same effect. Muscle is not as easy to lose as cardio endurance, so I don't freak out too much. There are also a lot of Jillian Body Shreds on Youtube. The beginner ones are sound workouts if you can handle Jillian. And I love barre. There is nothing like a good gentle barre workout to make one feel good. There are a few nice Barre 3 workouts on Youtube as well. I linked one here. It's pretty basic and just requires a ball and some 3 pound weights.
And another good resource for walking workouts - Leslie Sansone. She has a lot of Youtube walk workouts, too. And the great thing is that they are easily broken into miles. I just did a mile of one of hers and I'm feeling it, and according to my fitbit, it was a mile. So, that's great. If you have a rebounder, you can do them on the rebounder, too. I really want to get 10,000 steps today, but I need to take things in stages. A mile wore me out, so I'll rest and then do another mile later.
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I have a question, anyone else still getting their period? Mine had stopped after surgery and then restarted with chemo.
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cody_mx : I was about to get mine these days but I still didn't had it. I have some minor PMS cramps but no sign of period. Can't complain
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thank you Cjsharma. I'll definitely look them up. I am getting ready for my next round on Thursday. Right you are, fluids make the difference. I had a lot of water + coconut water during my first round and it helped. I could feel the back pain and left leg neuropathy but other than that I tried to soldier on. I hope my next one would be tolerable too. We can beat this
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Cody I had the same I stopped month after surgery and restarted end of first cycle . Was a very light period now pmsing again -
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3rd Chemo today - 3/4 THP done can't wait for the 4th to get done and then on to a two weekly Ac. went well, after that went to Sephora with my niece for some beauty shopping.
By the way have any of you gone for the Look Good feel Better program - is a fun free make up and hair coverage session. I enjoyed it and the goody bag they give has really nice products like Dior/Estee Lauder etc. I enjoyed it.
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Cody- I am due for my period any day now & honestly don't know if I will get it. I'm in line for AC 3.
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Good luck Positive!! Thinking of you today!
Numb - haven't heard from you for a while - are you okay? I worry!
Cody - I was not quite menopausal when I started, but I was close, so chemo tossed me into chemopause, so no period, thankfully.
6 days out from my final round (round 4) of AC. Yesterday afternoon was tough and evening. This morning I feel a bit better. We'll see how long that lasts.
I did manage to get in my 10k steps yesterday. I hoping for today as well, but we'll see. I have a light day, thankfully. I did schedule it that way on purpose. Hope everyone has a fab day!
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CJSHARMA - I am great Christine, better than ever since I started chemo for the last week, but I am going for my third AC on Friday and am expecting it to be the worst, so bracing myself for it. I have enquired about tapering off Dexamethasone for my next round and waiting for my Liaison nurse to get back to me on this.
I suppose at this stage we have discussed all our symptoms etc and there is less to post about every day. It is nice though to see how well everyone is doing.
I was just wondering about you this morning, this being your 6th day. When you say yesterday was tough, how did you feel ? Just wondering if your "tough" is the same as mine. Are you drinking lots of water and does it help ?
Are you starting Taxol in 2 weeks? Dying to know how that goes for you. I sure hope it is easier than AC for all of us.
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Hey ladies. I had my first AC on May 4th, had the shot the day after. Well when I went in for the blood work on day 8 they said that my wbc and platelet count was still low. So they put me on an antibiotic and told me to avoid sick people over the weekend. The nurse said that I may be too sensitive for their chemo and they may have to lower my dose. Has anyone ever had this happen?
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Hi Numb - I'm doing much better this time. Last time at this stage I had to call in sick to work. Today, I'm just trucking along. I'm working from home, and I am not pushing it on the exercise, but I did get the dogs out for a walk, so there is that. Hydration seems to be making a difference. So, hydrate, hydrate, hydrate. I'm drinking about 3 Liters a day (100 oz). Yesterday was tough with fatigue and depression. Everything seemed so darned hopeless. I'm much better today. It could still go downhill but I think I'll be in a better frame of mind.
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Cris - I know AC is a pretty brutal chemo regime. I am just coming out of my low point around Day 8, so it doesn't surprise me that you're a bit low. My doctor takes blood work the day before my next round of chemo just to make sure I was high enough. How are you doing today? Looks like you are triple positive. We have several woman in this group who are triple positive. The treatment is typically not AC, which is interesting (but I'm not an oncologist and everyone is unique - so I'm not saying your doc is wrong). Maybe check with the Triple Positive forum to see what they say. There is a lot of good information on these forums. Best to you! Thanks for checking in!!
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CRIS8325 - I would have thought that day 8 is the time for your white cells to be at their lowest, but should creep back up again by the time you get your next chemo, My white cells were only a .2 on Day 14 of my first chemo but came back up again to 8.6 by the time I was getting the second round on day 21, but bear in mind that I get a 3 week interval between rounds. I also thought that the Neulasta shot would look after your wbc, but no I never heard of a dose being lowered because of a low wbc, but then there is a lot I don't know about chemo.
CJSHARMA - Good that you feel you are doing better. Sorry to hear that you found yesterday tough but glad you are feeling a bit better today. It is great that you are finished with AC. How long do you have to wait before you start Taxol ?
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I went to my chemo class today - I will be given carboplatin and taxotere along with the Herceptin. I'm a little wigged out with all the side effects! The risk of infection freaks me out! My nurse just kept saying if you feel sick call, red area call, coughing call, constipation call, diarrhea call, basically call! She said they just want to make sure their patients stay well and out of the hospital ! I'm waiting for them to schedule a time to get my port. After that I start. I remember thinking in March when I was first diagnosed that everything seem so far away and now it's here and I'm a little scared! Reminds meof a song I sing with my kindergarten students Can't go around it , can't go above it , can't go under it , guess I'll go through it !
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Cris - Go to the Triple Positive group and ask the question there; I'm in that group too, as I am Triple Pos. too, and there are some ladies who post now and then who have been through their treatment years ago and just check in to help with knowledge (we are talking of folks who have, for example, 16,000+ posts! These women are amazing helper "angels" in my mind-they know so much.) But, from what I gather, it can happen that chemo doses need to be tailored to an individual. First of all, they are all tailored based on our weight. Second, I do know people can react to them differently. 23 and me, the gene testing service, has several genes they look at that show that people, for example, metabolize the blood thinning drug Warfarin differently, and that for such a person, she/he should receive less of that drug (I know this from personally looking at if for a family member.) So I don't see why chemo or any other drug would be different. Also, I have a friend with ovarian cancer (8 years surviving stage IV, though had to have several different times of treatment) and when her wbc count gets too low, they skip a week, or two, or three, until it is back to a safe range (and yes, she does all the shots, etc. but there is only so much that can be done.) So I think what you are experiencing isn't that abnormal, but if it was me I would ask my doctors more questions about why things are happening (why the testing on the day they do and not later, etc.), and on what they are basing their plan for treatment, etc.
Numb- Yes, it's good to just get out and live a little, isn't it? And yes, a night of the "runs" wipes you out entirely the next day. This week as been a rougher one for me, but then I had a good day and took a 4.4. mile hike in the hills! Then that night I had a bad-ish night (cramps and pain and nausea, but thank goodness no diarrhea again, so I considered it a vicotry), so today I literally lay in bed or the couch all day (save to let the dogs out now and then), and then managed to drive to a hair appt (got it cut super short in anticipation of the hair loss--shedding is happening rather a lot, and sometime between now (week 4 on Friday and week 7, with Taxol, it is typically gone. ) Not as definitive a time of loss as on AC etc, but it happens in 95% of Taxol only folks and I thought I'd have a hard time psychologically if it went in chunks from a very precise shoulder length bob cut... That is gone now (my classic cut I've worn in various lengths for virtually 37 years solid) and so I hope the adjustment to bald baby head will be easier!
Positive Power- I haven't gone yet, but now that I know the goodie bags have decently good makeup, I am definitely going to go. Even if the class is just so-so, I will be delighted to get the makeup. I love Sephora and had a great trip a few weeks ago with my daughter...I could literally spend a months' wages there, I am confident...
CJ -Truer words have never been spoken: when in doubt, hydrate! I thought I had an incipient UTI on Sunday, and as it turns out, the problem was completely solved with some serious hydration over the next 3 hours. I think it was just the chemo burning on theway out...and with urine not very diluted from good hydration, it left a bladder full of nasty chemo , feeling like a UTI even the second I was done with one bathroom visit! I carry the water bottle EVERYWHERE now!!!
Heathet: FYI, I didn't feel I had my normal energy until 6 weeks post-BMX. And I , though older at 56, was in excellent shape, swimming 2-3 times a week and hill hiking 2 times a week for an hour, and neighborhood walking. But I was dead beat...I started walking again and built up some strength, but didn't feel near myself until week 6. That is, of course, the day I started my chemo.
(And, my chest and scars etc were still quite tender and not at all normal; it is only now, around 10 weeks post-bmx that they don't seem painful all the time.) And byt the way, after a BMX, the port surgery was, for me, easier than getting a dental filling. And I LOVE my port. You may want to search PORT stuff here (don't get freaked), but for me, I am small 5 ft5", weigh 121 lb, very small bones, and I made sure I asked in advance for a "slim" power port. The regular woman one is bigger. I also wore a camisole top and insisted at the surgery that I see the interventional radiologist in advance before .) He came and visited me, and I showed him a picture of a "bad " port placement and said I sure hoped it wasn't going to look that that! And told him I wore cami tops all the time, and really wanted to try to place it in as least visible spot as possible. And, so he looked at me and drew on me and it's a great placement. Yes, you can see it under the skin, but it is in a spot that never shows in my clothes at all. And it is so great for CT scans, PET scans, every blood draw, and the chemo. Hands and arms free to move at will! Good luck with all....0 -
Thank you all for sharing your stories! Our May 2016 board is pretty quiet and I read through all of your board the last couple of days. I feel like I know each and every one of you!
Heathet, I had my port put in Monday and begin chemo tomorrow. I too felt like it was all so far away and now there's not nearly enough time to do the things I have left to do "before chemo" - pedicure, take the dog to the groomer, get meds for the other dog, another grocery shopping trip, etc. It's crazy! I tell my daughter (13) I'm living in "chemo time".0 -
KQHill - you hit the nail on the head with chemo time. When I was initially diagnosed I was living in the waiting time, then with surgery it was recovery time and soon it will be chemo time! Time is definitely measured differently with a cancer or any major medical diagnosis! My life has slowed down since I'm not working but it seems like everything is happening so fast! Another thing that seems different with time is that I feel like I was teaching years ago when really it has just been a little over a month. Like you I have a list of things to do before treatment - cleaning , grocery store, hair appt. I just want to get everything wrapped up so I can relax during chemo! Good luck today! I'll be thinking of you.
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