Anyone.Starting Chemo in October 2016?

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  • Abracadabra
    Abracadabra Member Posts: 1,369
    edited November 2016

    Hi Reina - Welcome to the group! Sounds like you a have great MO ... it means so much when they listen and adjust things to make it better for us. Sounds like you're really flying through treatment .. I'm jealous ... my AC is every 3 weeks, and I feel like I'm in the slow lane. Oh well, we each have our own path. Looking forward to hearing how things continue to go for you.

    Lidabit - So, so sorry that you had such a rough time. I also did a stint in the hospital for neutropenic enterocolitis, and I know how much fun that can be (not!). I'm glad you're reaching out for help ... that's the way to get through this. Love the story about your sister ... it's so great to have someone to laugh with. And also so great that that tumour is shrinking!!!!!

    Ella - You are always so encouraging, and it is very much appreciated. Have a great day!

    Barb

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  • Luwusu
    Luwusu Member Posts: 88
    edited November 2016

    lidabit,

    I am fairly new to this forum, but I am happy to know that even though you had a rough time, you're home and your sister was able to give you some TLC. Sisters can be the best. Mine lives about 1,300 miles away Fromm me, but she sends me cards a couple times a week, emails me, call she me and sends me an inspirational quote via email every day. So she has found. Ways to give me what I need even though she's not with me.

    Barb,

    Your posts are always supportive and show you are a caring person. Thank you.

    Reina,

    Glad your oncologist is flexible and that that you found this nice community.

    Nancie

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  • lidabit
    lidabit Member Posts: 26
    edited November 2016

    Thank you everyone! I have reviewed all of the posts and I have some answers for questions I have seen.

    MEtallic taste in mouth - I had that and I heard sucking on ice chips/ frozen grapes during the taxol/ taxotere helps. I also don't cook anything in metal pots when I have it and that helps. I also strongly recommend this cookbook One bite at a Time. It has been a life saver. https://www.amazon.com/dp/1587613271/ref=wl_it_dp_o_pC_nS_ttl?_encoding=UTF8&colid=1DI1P5NEMHC4X&coliid=I2XI5VTOG40MDW

    Neuropathy - I have heard of the icing, when I worked in oncology back in the day, we would recommend a home made chili paste to rub on fingers and toes. I couldn't find it, but I did find this on Livestrong:

    Research

    In a clinical study published in 2002 in "Acta Diabetol" in which topical capsaicin was applied to the feet of patients with symptomatic diabetic neuropathy, capsaicin was found to improve symptoms, including pain perception threshold. Researchers concluded that capsaicin cream was effective in improving symptoms of diabetic neuropathy, without causing adverse effects on nerve fiber function.

    Usage and Considerations

    Over-the-counter pain-relieving topical cream is available in concentrations ranging from .025 percent to .075 percent capsaicin. Don't allow capsaicin to contact cuts, wounds, the eyes or mucous membranes. Drugs.com notes that allergic reactions to capsaicin have been reported; an allergy to mugwort, celery, fennel, birch pollen and anise may make a reaction more likely. If adverse reactions occur, Phaneuf recommends removing capsaicin cream with diluted vinegar.


    BE VERY CAREFUL AND FOLLOW DIRECtIONS EXACTLY - we had a patient who burned her fingers and toes because she left it on too long.

    I will keep looking through to see if there is anything else I can help with


    Everyone hang in there!


    E

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  • Whistlestop
    Whistlestop Member Posts: 45
    edited November 2016

    Luwusu: Hugs to you as you had a lot in a few days. Hope you port area is better. As being on the same regiment (12 Taxol) with the triple every third week. Had pretty good week last week, Adele concert a chamber breakfast, and then a 4th Chemo.... ( the triple cocktail).

    I am managing the benadryl fine at the Taxol only infusions, however for about 30 mins after they infuse the benadryl I have the shaky legs and hands. So glad someone has been sitting with me as that time passes.

    Anyone else have this regiment and who can comment on this SE ?

    Thank you on the hairwrap/turban videos. Noted hair shedding on Day 21 (@Chemo 4 last Friday) and it continues now. Working to align time for buzz cut and wig fitting. Thankfully Methodist in Houston has free wig program. Any incites on timing from shedding start to the real ragged look ?

    Thank you in advance. Terry ( Whistlestop )


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  • DogwoodPos
    DogwoodPos Member Posts: 9
    edited November 2016

    chickdudefood: thanks for your comments on genetic testing. It helps.

    Not feeling great after chemo this week so will check in again later.

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  • Luwusu
    Luwusu Member Posts: 88
    edited November 2016

    whistlestop,

    I'm on the same chemo as you. I began losing my hair a day after third chemo and it came out in large amounts. I had extremely thick hair and hoped it would only thin. However every day I lost a huge amount even though I only brushed it once a day -I was desperate to keep it. Four days later, the hair I had left (still a good amount - I started out with a huge amt)- began forming dreadlocks and I knew the party was over. I got my head shaved on day 6 after it first started falling out. It has been the most traumatic part if this whole adventure so far. I did get a wig. It's okay. I only wear it when I'm out of the house. When's I have it on I think about when I will be home si I can whip me it off. I bought a couple simple jersey type caps to wear. They are all big though and eventually I whip them off too.i have chemo #5 this coming wednesday.

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  • Nfullblume
    Nfullblume Member Posts: 171
    edited November 2016

    Good evening ladies!

    I know it's on this thread somewhere, but can't find it...did you guys where makeup to the Look Good Feel Better class? I need to work after the class and the videos make it seem like they will help wth makeup, so I think I'd rather leave it off versus taking off eye makeup when I get there.

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  • Connie1230
    Connie1230 Member Posts: 192
    edited November 2016

    Nfullblume, at the class I attended, part of the kit was makeup removing wipes so it's really up to you. I assume all of the kits have these. They do have eye makeup in the kits too. BTW, if you don't mind saying, which part of FL do you live in?

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  • chickdudefood
    chickdudefood Member Posts: 51
    edited November 2016

    Nfullblume, I went to a Look Good Feel Better class today and some of us came with makeup on and others without--we did use wipes to take off makeup for a clean slate. It was a lot of fun, much more so than this eyeliner/mascara/lip gloss only person would have thought. We experimented with lots of things I don't routinely use, like concealer and foundation and lip pencils and lipstick, and I have to say, we all looked completely awesome yet natural by the end. Tons of other good advice too about preventing infections, how often to replace products, nail care, head wraps and wigs, etc.

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  • Nfullblume
    Nfullblume Member Posts: 171
    edited November 2016

    Awesome, thanks Connie and Kate. I'll go sans paint. Lol!

    Connie, I'm in Lakeland, about 2 hours from you.

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  • Ella22
    Ella22 Member Posts: 39
    edited November 2016

    Barb- Hope you are able to get out and enjoy a little walk today. It's raining here today! My daughter left last night and hoping the worst of the SE are gone! Just coming out of the fog that the chemo puts me in, determined to make it a great Tuesday! Hugs and prayer

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  • IL311
    IL311 Member Posts: 28
    edited November 2016

    Hi All,

    This is my first post as just been stalking and trying to figure out how to navigate this site. I had my first chemo on October 29th. I am using Artic Cold Caps and so far no hair lose. I know it is silly in light of cancer but am hair obsessed. Luckily my family and friends are super on board and awesome. I have my second treatment this Friday, super nervous and wondering if anyone can share any experience of their second treatment? First one was pretty uneventful. Everything went as expected and sucked but doable. After Friday just trying to focus on being half way through this chemo journey to come out the other side. Any tips on dealing with round 2 or cold caps...would be much appreciated?
    Thanks in advance

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  • Hkuester
    Hkuester Member Posts: 27
    edited November 2016

    Anyone have any tips for leg pain? I think it's white blood cells growing but really bothersome day 4 and 5 after Chemo. My head and ears hurt too.

    Looking forward to Look Good Feel Better tonight, sounds like lots have gone already.

    Ill3 so jealous are you getting 4 Chemo? I'm scheduled for 6 which seems easier than others road but 4 sounds even better. Anxious to hear if the cold caps do well.

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  • Charlene1
    Charlene1 Member Posts: 72
    edited November 2016

    Whistlestop - I also have the same problem with the Benedryl ,  what I found is if I stand up or sit with my feet flat on the floor that is not as bad but I had it right from infusion 1 and I just completed 6 last week with 6 more to go.  I have found that the symptoms are not as severe now but still annoying.

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  • Abracadabra
    Abracadabra Member Posts: 1,369
    edited November 2016

    Welcome, IL311. It's great that you have strong support from family and friends ... it makes such a difference. Which chemo treatment are you on? Many of us show this in the profile information at the bottom of our posts ... it lets you know who is doing what! I am on the AC (4x3weeks) + Taxol(12x1week)), and have 2 down so far. I found the second treatment a little easier than the first, because I knew what to expect. I don't have any info about cold capping as I didn't do it. Looking forward to hearing more from you!

    Ella - No walk for me today (although it's a beautiful sunny day here today) ... I'm having an allergic reaction to my antibiotics and have a super itchy case of hives! It's ridiculous ... all I want to do it scratch (at which point my husband and son both chime "Don't scratch!"). My MO gave me something to take to relieve the symptoms, but it makes me fall asleep. I slept until noon today, then got up and have been groggy ever since. I think I'd rather be itchy than unconscious! On the good news side, my dog is doing better. We carried him outside today, and he was able to lurch around the backyard like a doggy Frankenstein, so he's definitely on the mend. Yay!

    Lidabit - Thanks for the info about capsaicin ... it's interesting. I remember that my mother-in-law used to use something similar to ease her arthritis pain. It's good to have different options!

    Have a nice day everyone.

    Barb

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  • Ella22
    Ella22 Member Posts: 39
    edited November 2016

    Barb- It seems that every corner it something new to deal with! My positive attitude only goes so far... Sorry your having to deal with yet another SE. Happy your dog is getting better! Fatigue is getting the best of me today and my skin seems to be breaking down everywhere! I keep using the Biotene mouth rinse to hopefully keep my mouth from getting sores! Dealing with the big D again. My worse day so far since chemo#2. Wish I could just go to sleep and wake up when its over.... but of course I can't ! Thanks for listening....

    Hugs and Prayer

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  • Luwusu
    Luwusu Member Posts: 88
    edited November 2016

    Ella 22,

    I feel like you do today. This rainy, gloomy weather all day didn't help.

    I had wicked diarrhea up until last Thursday. I switched from liquid Imodium to the tablets. I don't know if that's what did the trick, but I hated the taste of the liquid stuff and the pills are working, so that's good.

    My skin is very dry, even though I spread moisturizer like there's no tomorrow.

    Barb- glad to hear your pup is improving. It must be good to see him outside, even if you needed to carry him.

    Onward to Chemo #5 tomorrow in Boston.





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  • b2alicia
    b2alicia Member Posts: 64
    edited November 2016

    Ella, I am convinced that the mouth sores AND the diarrhea are connected... I talked to my P.A. about it this morning. The chemo poisons not only wipe out the cancer cells, but they wipe out the good flora that line all our mucus membranes such as in our mouth, nose, stomach, and intestines. So just like when we take antibiotics and need to double up on stuff like yogurt or other PROBIOTICS, we need to do the same thing with the chemo. I started taking probiotic capsules about 10 days ago, and my mouth healed up right away. My diarrhea was more complicated.. I also had to add in a thing called L-GLUTAMINE, an amino acid that they carry at Whole Foods.--2 capsules 3 times a day.

    I'm finally going to get my second of 18 chemo infusions on 11/17/16. It was postponed a week because of the diarrhea and resulting low potassium level. So I'm glad to get moving along with it, but at the same time, REALLY worried that some new nasty side effect is going to pop up :(

    Ella, I'll think of holding hands with you and wishing both of us easy progress through our chemical warfare. **HUGS**

    Barb, SO glad your doggie is doing a little better! It's tough when our 4-legged family members don't feel good.

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  • KelleyZ
    KelleyZ Member Posts: 2
    edited November 2016

    I started chemo on Oct 28. I have Stage III DCIS and Invasive Mammary Carcinoma of my left breast. Lymph showed positive, but no distant disease. I got a CT, MRI, bone scan, etc. the whole bevy of tests. I'm interested in who on here is an athlete who is planning to continue to workout while in chemo, and what, if any adjustments you'll make during chemo

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2016

    Hi KelleyZ-

    We want to welcome you to our community here at BCO! We hope chemo has gone well so far, and you aren't experiencing too many side-effects. In regards to your question about staying active, there's a thread you might find interesting in our chemo forum: https://community.breastcancer.org/forum/69/topics.... Lots of good info and advice there from other members.

    Hope this helps!

    The Mods

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  • b2alicia
    b2alicia Member Posts: 64
    edited November 2016

    Grendel, I've been meaning to reply about changing cancer centers,because that came up with me too.

    There are 2 Rocky Mountain CancerCenters near me. One is 5 miles away, on Huron St. The other is 15 miles away ,in Boulder. My primary doctor, my surgeon, my own research, all concluded that the medical oncologist and radiation oncologist I should see were both at the Boulder location. When I saw the radiation doc, I asked him if it would be ok if saw him for appts in Boulder , but had the treatments on Huron, and he said that was fine. BUT.. when I asked the same thing to my Medical Onc, she said no. ( And now that I've started chemo, and I see how sick it can make you, I can see why. ) She told me that because of how strong the drugs are, she'd rather be in the same building where the treatments are going on. I was a little worried about the bad weather that will be coming up, and she said that we can always reschedule a day or two if necessary.

    So in general, if you can find out a little bit about some of the providers at the closer place first, that would be good. I'm sure that if you told the administrator, or someone, at the farther place, that the distance is just too much of an issue, I bet they would understand. Your current MD there may even know someone at the closer place that he/she could recommend. I would definitely schedule a specific appt at your current place, with your present doc, say how much you like it there, how happy you are with your care, but the distance is just getting to be more than you can handle.

    Just my two cents.

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  • Whistlestop
    Whistlestop Member Posts: 45
    edited November 2016

    Charlene1 - thanks for the input on the Benadryl. Got some input from a former infusion RN today, who I mentioned only trouble on 1st and 4th following the Herceptin. As my Benadryl is injected in the "Y" in the IV line, she had suggested asking the infusion nurse, to ease it in at a slower flow rate. I have had a different infusion nurse each time. Also if this helps then I will ask them to noted it on the chart. In addition she also offred the suggestion of switching to something like Claritin, that is to be determined. I think the Benadryl is fine as it has only been after the Herceptin, that is 2 out of 4 times and the last time more than the first, so flow injection could have something to do with it. May add 10 mins / 15 mins to the total infusion process, but to remove the shakes ...well worth it.

    Luwusu as KLNiss wrote - feel free to talk about Rosie....or anything you wish as releasing what ever feelings you have is good and this is a very safe place.

    b2alicia - your hats are fun and your photos looked like you were having fun trying them out. Nice smile and it shows in your eyes too! And wow what a wonderful view from your cancer center.

    here's a photo of my view.... and the best part..... so far all 4 days have been fabulous sunny days. The wonderful Houston Med Center and nearby green of Herman Park and on the other side the view of Rice University. So my green canopy is from above 21st floor.

    image

    Love the therapy dogs too and everyone's pup pictures. Here's my two rescues and road traveling buddies - Dixie ( longer haired ) and Denny ( short haired little one)

    imageimage

    Thank you ladies for all of your info and keep up the great work.....Chin up ....

    image

    BTW : http://abcnews.go.com/GMA/video/cancer-survivor-talks-treating-gma-43535504 may be of interest on Good Morning America this a.m. ( apologies for all the commercials in the clip ) a series coming up on WebMD.

    Again THANK YOU ...... I am receiving all of these gifts , your stories, your input, and using every bit of this energy in a useful powerfully refueling way. Here's to Thriving.

    Terry ( aka Whistlestop )

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  • b2alicia
    b2alicia Member Posts: 64
    edited November 2016

    Hi Terry! Good memories of Houston Med Center...I lived and worked there for 15 years before I moved to Denver. Right across Main St from Rice is St. Paul's Methodist Church, where I sang in the choir from 1989 - 1992, until I moved to Colorado.

    image

    Dixie and Denny are adorable!

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  • kshorten
    kshorten Member Posts: 102
    edited November 2016

    Well day 7 after second treatment and I was hoping that the Neulasta SE's would pass me by this time but they didn't. Showed up right on schedule with lower back pain. I continued taking the Claritin for the whole 21 days and I'll do it again this time in hopes that they aren't going to be quite as bad. The good news is if everything follows the last treatment I'll start feeling pretty good by tomorrow! Everyone have a Blessed Day!


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  • Abracadabra
    Abracadabra Member Posts: 1,369
    edited November 2016

    Ella - Hoping that today is a better day for you. (((Ella))) Gentle hugs.

    Luwusu - Thanks ... you're right, it is good to see Max roaming around outside. I'm thinking of you today and sending positive thoughts for your chemo treatment #5. Hope it goes well.

    Betty - I'm very interested in your experience with the probiotics ... I've been taking them for about a week because I'm on antibiotics. The doctor told me to take them for a month, but maybe I'll keep going with them past that point. And I'll track down some L-glutamine too ...

    Welcome KelleyZ! I'm 55 years old, and do not consider myself an athlete (I used to do a lot of running in my younger years), but I have always exercised regularly. Throughout chemo, I have been able to continue with my regular schedule of swimming 2x a week, gym 2x a week, and yoga class once a week. I don't do anything on a chemo day or the day after, and I adjust the intensity of my exercise according to my energy level of the day. I really believe it helps reduce side effects of treatment. Best of luck ... hope to hear more from you!

    Terry - What a view! Dixie and Denny are adorable ... dog pics always brighten my day!

    Kshorten - Sending you positive energy to get through the day, and hoping that tomorrow brings you relief from that back pain.

    Have a lovely day.

    Barb

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  • chickdudefood
    chickdudefood Member Posts: 51
    edited November 2016

    Hi KelleyZ,

    I'm very active and am a yoga instructor. You didn't say if you're going to have any surgery--that will impact what you're able to do. I've been very lucky with chemo side effects, and so have been able to continue my daily personal practice, but after a lumpectomy and lymph node removal, I'm still only cleared, in terms of the gym, to doing lower body exercises with what I would consider my normal weight load, and I've had to change machines since I am very limited in what I can lift with the affected arm because of the risk of lymphedema. I'm now, about 6 weeks after surgery, only doing an arm routine with 2-3 lb weights, and I certainly couldn't lift any 45-lb plates onto, say, a leg sled. I wear a compression sleeve any time I do any type of exercise, including walking, and I'm not cleared to run yet or to work up what I consider a normal gym-type sweat. And I'm not teaching currently.

    If you're not having surgery, you may find it easier to keep up...I'm taking the "I surrender" approach and am doing as much as I'm cleared for but not pushing it beyond that. I haven't gained any weight, but I'm guessing my body fat index has changed. The yoga I do is hatha yoga, not vinyasa flow, and I'm finding that the body weight postures involved are sufficiently challenging for now while so much else is going on. I do a "light" home practice every other day, and a more intense practice at the studio a few days a week, and I try to walk as much as I can, although that's getting more difficult because of weather where I live in the Boston area.

    Good luck. I know how important movement and activity are to my own state of mind, so I hope you can continue with your usual activities during all this!

    Kate



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  • Ella22
    Ella22 Member Posts: 39
    edited November 2016

    Betty- im going to try your probiotic suggestions.. My MO wants me to get a referal from my primary and go to a gastroenterologist DR. I just don't feel like being put thru more right now.. I will say an extra prayer for you tonight that #2 goes without any new SE.! Holding cyber-hands!

    Barb- Hugs are what get me thru the day! Thanks!

    Luwusu-Yes I too keep putting on moisturizer and seems like for no reason!

    Kshorten-We always hold out hope that we will squeak by...

    Hugs and prayer

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  • b2alicia
    b2alicia Member Posts: 64
    edited November 2016

    Hi Kate!

    Here's something I did after my lumpectomy and lymph node removal... And everything feels NORMAL now. Downstairs in the office building from where my surgeon works is a Physical Therapy department, and one of the PTs there treats only post mastectomy patients. So her specialty is lymphedema management. Now, in my job right now as a certified hand therapist (I'm an OT), I work with 3 very good PTs, but they are not mastectomy specialists. So I had 4 sessions with the PT by my surgeon's office, and I learned a lot. And now, all the swelling and soreness are gone. I had 3 lymph nodes removed, and one of the 3 had cancer cells. So if your surgeon sends all his mastectomy patients to a certain PT, you might see if you can get in to see that person for a few visits.

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  • chickdudefood
    chickdudefood Member Posts: 51
    edited November 2016

    Hi b2alicia,

    Thanks, I have been going to a lymphedema specialist PT--I think perhaps because I had so many nodes removed and 9 out of 18 had cancer cells, I'm at higher risk than those who had fewer removed. She's the one who's encouraging me to go very very slowly in adding weight--no more than one pound every 3 weeks or so. I'm working with 2 pounds now, which seems ridiculously easy, but I am more fearful of triggering lymphedema than I am of losing a little muscle mass--which I know I can build right back. For me, also, no saunas or steam baths ever again, no soaking in a hot bathtub (I do take bubble baths, but quick ones), no sunburn, be very wary of mosquitoes and small cuts and deep massage, no use of that arm for taking blood pressure or blood ever again. So she's got me on the track of super-caution. I'm just happy that I can do a plank and a downward facing dog in yoga--at least so far, so good, and with that I even waited until she gave me the ok. I'm fine with all this--as long as I can walk and get on the mat, I'm grateful.

    Best,

    Kate


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  • b2alicia
    b2alicia Member Posts: 64
    edited November 2016

    Kate, that sounds PERFECT! Exactly right. Drinking lots of water? Lymphatic breathing? Pressure garment?

    You might want to try some baby-step locust poses as long as you don't feel any real pain though your lymph node surgery. Ask your PT if she thinks it would be ok.

    image

    I think you are doing GREAT !!

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