Anyone Starting Chemo in June 2016

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  • Moondust
    Moondust Member Posts: 510
    edited August 2016

    Little Red, love your photos! You can make a nice icy smoothie using almond milk and frozen fruit. I add some vanilla for flavor, too. I use 1.5 cups almond milk, 1 cup yogurt (you can omit or substitute a non-dairy yogurt), 1/2 frozen banana, 1 cup frozen fruit (I like peaches and strawberries), and about 1/2 cup water. Add your choice of sweetener if it's not sweet enough. Whiz it all up in the blender. If you want it colder, add extra ice and blend it more! This makes a lot and really will fill you up!

    Labmom, it will be great to be done with taxol! It will be interesting to hear how your SEs differ when you start the AC. I mean, it all sucks but we have to find something interesting to keep us going!

    Lilyp, we ARE all together. I feel it too!

    Acie, sorry you are having a rough go of it this time. It has been so hot here that I can barely stand to wear a beanie, let alone a wig. But curly would be fun.

    Keely, have a good time this weekend!

    I am heading up to the mountains tomorrow afternoon. I was invited to stay at a cabin and hike with a friend I haven't seen in a while on Sunday. It will be fun and uplifting. I hope everyone has a decent weekend. Stay well, drink a lot!

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  • revnet
    revnet Member Posts: 51
    edited July 2016

    I am getting symptoms on my face that resemble rosacea, on my cheeks. It is quite upsetting. At first I thought it was acne, which I never had in my life on my cheeks. It started mildly right after my double mastectomy and now one week out of my 3rd TC dose, it's to the point that I have to cover it up. I don't ever wear make up, I am aux natural, until now. My good hair and good skin.......what's happening to me :(
    Is any one dealing with something similar, or may I have just coincidentally gotten this skin condition at the same time as all the other fun?

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  • ClarkBlue
    ClarkBlue Member Posts: 170
    edited July 2016

    I'm a terrible chemo patient... I go everywhere... Concerts, restaurants, bars, oh my! I guess I'm just always so germophobic that I'm super careful already... Never touch ANYTHING and always wash wash wash my hands. BUT I do get the Neulasta shot which has helped keep my levels up. 😊

    Lilyp it's the little things isn't it? Sometimes it's just nice when people ask you about your situation. I feel bad for people though, sometimes I want people to ask, and sometimes I'm tired of talking about it all the time... Poor people can't win with me!

    Thinking of you all... I agree... I do feel like you're with me all the time too ❤️

    -Keely

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  • lilyp6
    lilyp6 Member Posts: 214
    edited July 2016

    Revnet: How was Lollapalooza? I went to the first and second, (91/92), which dates me as the wise old woman that I am... How do you stand up for that long??? I'm streaming Two Door Cinema Club right now. These days I'd rather see it on my computer! I'm not sure about your rosacea, but I was getting a rash on my forehead/cheeks, and my MO recommended Hydrocortisone 1% cream, which seems like it's working. My acne/rash looks gross to me, too. I didn't have that much acne as a teen.

    Littlered: Love your pictures, you are such a photogenic doll.

    Acie: Yes, you get as many wigs as you want! That's the rule. Sorry to hear about your terrible SE's. I know you will feel better before your 4th, and forget that you've been feeling this bad. I understand about the nausea...I dread that more than anything.

    Labscientist: You are just ahead of me with the Taxol/AC. I'll be looking to you for tips. Will you have 3 weeks in between A/C treatments too? I hope all is relatively OK with your poor sinuses. I bought my saline spray today to use between neti pot treatments. I have dried blood in my nose all the time and it makes me sneeze. I guess at least it's dried...You seem to be blessed with a solid immune system, especially with sick folks right in your house. And I agree, a little common sense goes a long way. It helps that I was already germ-conscious before this even started. People made fun of me, but doorknobs, handles, and anything that people touch are a great way to pick up sickness. I do want to see the new Star Trek at least. Maybe we'll go during the day and sit in the back!

    Moondust: I hope you're having a blast hiking at that cabin in the mountains. I've been making smoothies like crazy for weeks, using almond milk. Right now they're with fresh fig/peaches. I wash them carefully, and don't use the peels. I wonder if that's really necessary, but I'm being careful. I also wash and freeze my own farmer's market organic berries.

    Clarkblue: You sound like a thriving chemo patient. I haven't had the shot yet, but my blood counts are getting fairly low, so maybe soon. I hear you...there are some times when I don't want to talk about it at all. But mostly I prefer to talk about it.

    Tonight's dinner, produced mostly by my husband: Tri-tip, brown rice with pesto, shaved balsamic brussel sprouts, and grilled corn. He gives me huge servings, and I eat about half. It's been a good day. image

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  • labscientistmom
    labscientistmom Member Posts: 287
    edited July 2016

    ClarkBlue: Its nice to talk with people I know, and I appreciate them asking, but not necessarily want to discuss it with all and sundry, and I want to get to choose when I need help and fussing over. Are we just grabbing for some kind of control? Because there is so much that we just have to roll along with...hmmmm.

    lilyp6: dinner looked yummy! I made macaroni and cheese with broccoli and tuna tonight,and my hubby says he will buy me dinner tomorrow. Its really funny, I am just very blessed right now (something has to go right in this process!) I have asthma and usually catch whatever my son or husband is sick with, so hallelujah and huzzah, I am thankful that my immune system seems on the ball. I have been weekly with taxol, and will be every two weeks with A/C treatment. I want my toes and fingers to not be numb and sore any more, just read it may take 3 - 5 months for it to improve. WTH?? really?? My sinus wasn't bleeding as much today, but it was doing it, was sore all day and sinus headachy, more tired easily. Had a friend come clean my house, my mom helped pay for it, so helped the friends budget too, as she's been out of work. Hope you get to see the movie this weekend! enjoy the yummy fiber filled popcorn!

    Moondust: hope your hiking is lovely. would like to see more pretty pics.

    Revnet: hope you are not too tired from the music festival.

    EVERyONe: enjoy your Sunday! Here's to energy, joy and laughter! Hugs and blessings, A

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  • Little-Red-Corvette1
    Little-Red-Corvette1 Member Posts: 66
    edited July 2016

    Good Sunday to All!

    Moondust thank you for the smoothie recipes. I'm in dire need to switch up some of my diet. On treatment week I go Monday so up to Wednesday I'm still ok from the IV drugs. Thursday and Friday are nausea days which causes I hate to say it horrible constipation. I took MIralax yesterday and 2 softeners + stimulant. Still waiting. I can't seem to get ahead of this SE. I've decided from my first treatment (mind you this was my second of 4 AC) I will not be eating corn!!!!

    Lilyp6 Thank you for the compliment! You are sweet! Talk about dating ourselves....There is a NY Mets game in 2 weeks with a free STYX concert after! I am a true 80's girl! I plan on going as long as it's not too hot, and I keep a handle on my SE's it is a tx week.

    Labscientistsmom we will definitely be trading notes! I have 2 more AC then on to weekly taxol. Unfortunately you are the experience one there. On the AC I get pre drugs Benadryl, steroids,fluids, anti nausea Meds. About an hour or so. Then the Chemo nurse brings 3 ampules of red liquid which she injects directly in. She takes her time does it slow. That's the ADRIAMYCIN then the CYTOXIN is in a drip. I get Zofran for nausea. My hair has fallen out on day 16 as my Dr. Predicted. And he said to expect nail beds to turn black and possibly lift. That has not happened yet but they did stop growing. That is my experience but as we know we are all different. I hope this band goes much easier for you after you kick taxol butt!

    Acie so sorry your sick. My MO told me this week it gets easier as you go along and I thought how???? Not only do we deal with our bodies not responding as we are used too -but ride this wild emotional roller coaster. Keep your chin up your my fashion girl!!!! We got taxol then rads. We do it with style.

    I hate that I'm afraid to do things because "I may go down" My stamina stinks. It's been worse here because it's been hot and humid!!!! I usually spend all my work time off at the beach. Now that I have time I can't do the summer outdoor things I love. This week is supposed to be cooler temperatures so I am determined to get to the beach even if I do have to sit under the umbrella.

    My hairdresser bless her heart gave me that cute cut on Wednesday and by Saturday she had to buzz it off! It was coming out like Charlie Browns Christmas Tree. My 2 sisters also had they're hair buzzed off for solidarity. We all look pretty much alike. I do have an amazing family even if they are a bit quirky. I'll post a pic of the 3 of us when I get one. My brother said we look like the Manson girls. He knows their names. He has us all set for Halloween! Ass! He's bald too!

    I love you all my little family


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  • SBB
    SBB Member Posts: 11
    edited July 2016

    Hi All, I was wondering if anyone has been treated with Abraxane. My doctor is talking about using abraxane vs taxol. From my research it seems the SE are more intense with Abraxane but it is a cleaner transport via albumum. Also my Onco gave me Emend for SE and it really wiped me out and I think it also made me depressed. Anyone out there with info on either of these? Tnx

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  • SBB
    SBB Member Posts: 11
    edited July 2016

    Could someone tell me what the Facebook name is for this group? Or maybe it is an independent group....

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2016

    Littlered...

    Nails need to have tea tree rubbed into them and then apply black nail polish to them. That helps keep them in shape and stops them falling off!

    DD

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2016

    SSB, Pepper has it set up. I will let her know you want to join.

    D

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  • SBB
    SBB Member Posts: 11
    edited July 2016

    Thanks Dolly


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  • Heathet
    Heathet Member Posts: 257
    edited July 2016

    revent- try some Aquaphor on your face. I was breaking out in a really bad rash on my face and someone recommended it to me and it works really well.

    Little Red Corvette – I'm afraid to go out sometimes too because my stamina. sometimes I can feel fine and then half an hour later I'm super tired. I haven't been to the grocery store since I started chemo because I'm such a germ freak! I have been to the little market around our house but I'm not sure how comfortable I am being in crowds.

    SBB - PM pepper43 to join the Facebook page.

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  • Little-Red-Corvette1
    Little-Red-Corvette1 Member Posts: 66
    edited August 2016

    DollyDimples Thank You for the tea tree oil advice. I do now remember something about it being good for fungus on nails.

    Heathnet I love Aquaphor!!!!! I use it everyday. I was never a germaphob because I work in a store! I'm much more conscious now but I thank god for the neulasta!

    Here is a pick of me (in the middle) and my sisters!image

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  • Acie
    Acie Member Posts: 57
    edited August 2016

    great pic Red. You do favor each other quite a bit. What great support you have!

    I agree with you and heathet. Aquafo is awesome. Works for everything and never irritates. I am going to use some now and get to sleep early.

    Have a good week everyone!

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  • lilyp6
    lilyp6 Member Posts: 214
    edited August 2016

    Labscientist: No movies for me today. We ran errands, then I had a good nap and an easy yoga class. Mac n' cheese is something I never ate before the big C, but I find it tremendously comforting now. Last time I added mushrooms, (and not the dreaded broccoli). You probably said before, but what are you taking for your toes and fingers? I hope your team can help you with it. Mine always wants to help me alleviate every SE.

    Littlered: STYX! Fabulous! I hope you get to go to that concert. I do understand about the stamina, though. It's frustrating. Love seeing you with your sisters. Sometimes I wish I had some!

    SBB: I've never heard of Axbrane or Emend. Maybe you're on some new and promising treatments? Anyway, I hope you get some feedback.

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  • labscientistmom
    labscientistmom Member Posts: 287
    edited August 2016

    Little REd: I like your picture too, you all do look alike, wow, you must be sisters. :) chemo brain is afoot! Dragged myself to church today, felt headachy and no energy. Drinking tons of water but still feel like I am ina desert with an empty canteen. Had back spasms in my hip/back above my pelvis. Went to lunch with friends and then spent the afternoon working on a new 750 piece puzzle with a friend. We got about 1/2 way thru it. She saranwrapps all the pieces to the card table and stores it in her garage until the next time. STYX would be a fun concert, I got their Paradise theater album when I was 13 and played it over and over. Thanks for your rundown on A./C infusion. It helps to prepare sortof.

    Heathet: I don't have enuf stamina either. Some days I get a couple 3 errands done then I hit the wall. Days like today, just getting a shower is exhausting. It would be great to be able to predict when the difference will happen.

    Lilyp6: For the neuropathy, I take l-glutamine powder, 1 6 gm scoop 2x daily mixed in a drink or something. Also ice my hands and feet during the taxol infusion, which is now 2 hours for me. My good friends husband makes amazing mac n cheese with 3 or 4 different kinds of cheese and bacon. Tomorrow I finally get to see the lymphadema physical therapist. the Rads oncologist sent me there because she says I already have a size difference although small in the left arm where I had lymph nodes out. I have noticed more pain in my bicep and underarm lately, so glad to finally be going.

    Acie: hope you get some good rest. :) and you have a good week @work.

    Tuesday is infusion number 11 weekly taxol for me. almost done and on to the dreaded A/C. Hope you all have lovely sleep and a good SE day tomorrow. Blessings, and hugs, A

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  • Heathet
    Heathet Member Posts: 257
    edited August 2016

    Red - love the picture of you and your sisters!

    This is my pre-chemo week. I meet with my MO tomorrow to make sure I'm good to go for my Friday infusion. On Thursday I see my PS for a check up on my implants/healing. Then Friday is #3 for chemo. I'll be at the half way point with 3 more to go. I think I've developed a thrush infection in my mouth. I'm glad I'm seeing my MO tomorrow so she can prescribe something. I've been on 2 rounds of antibiotics for the UTI and (hopefully I'm not being to personal) I'm treating myself for a yeast infection. I use a probiotic but maybe I need to research a better brand - I use culturelle any suggestions?

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  • Little-Red-Corvette1
    Little-Red-Corvette1 Member Posts: 66
    edited August 2016

    Heathnet: Anytime I'm prescribed heavy antibiotics I start taking live Acidolpholis. I first started before the BC because anytime I would get them I would get a yeast infection. TMI. The thrush mouth , UTI, are basically the same reactions to the antibiotics. They throw off your bodies natural PH. My sister takes the acidolpholis because she gets thrush mouth from antibiotics too.

    When this journey began I took that pre-chemo list right off this site and it has been a lifesaver.

    If my mouth starts to get sore I go right to the biotene.... Aquafor is wonderful for my skin I never used it before. I wash everyday with antibacterial soap. Then Aquaphor.

    I'm going to get the t tree oil for my nails per DollyDimples suggestion.

    I read everyone's posts! Love all suggestions!

    You all have taught me 2 valuable lessons!

    Try to stay ahead of the SE's! And laugh whenever possible.

    Jo

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2016

    Heathet,

    I am with you on Friday m'lady!! I too am in for infusion number 4 (only two left after that). I am not looking forward to it at all and just want it over and done with. I want this chemo finished. I want to get back to a full head of hair and a healing body minus the toxins and poison.

    I am sorry to hear about your thrush and UTI. Good that you are seeing your onc tomorrow. I see mine on Thursday.

    I have done OK so far. Nothing drastic on SEs front and really feel very lucky in that respect but now I am just starting to panic that I have maybe be on a less harsh chemo than the rest of you and that maybe I should have had something far harsher??

    What time is chemo for you on Friday. I am in at 1pm (not sure what time that is in your bit of the world). I will be thinking about you. Are you still off school? I am. I am not going back til after all treatment is done.

    Labscientist,

    I hope tomorrow goes well for you. I hope you have zero side effects. Glad you have remained healthy and not picked up any sickness from your men!!! Ban them from the house haha.

    LittleRed,

    I am glad to have helped with the nail polish. I had this from several sources. I use my tea tree and black nail polish, although not sure my chemo actually does affect nails, but still I do it to be on safe side. Your hair looks fab. How are you doing with everything else? What chemo are you on now?

    Moondust,

    How are you? Are you away off to the hills again? You mad mad woman!

    Acie,

    I hope you are doing well. Do you use the FB account too? How is that gorgeous wig of yours? I bet nobody has even noticed any difference.

    Dolly


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  • Heathet
    Heathet Member Posts: 257
    edited August 2016

    Dolly - my chemo is at 10:00am and I'm off from school until Dec/Jan. I'll be done with chemo in October and then it will be off to radiation for 5 weeks. I could work during radiation but I want to take time off to allow my body and mind to heal. Im torn about work. I love teaching but over the last couple of years it's gotten really stressful and I want to avoid any stress! I'm going to have to rethink how I want to approach teaching

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2016

    Heathet,

    I am doing the exact same thing too in relation to work. I have been thinking about cutting back to three days a week. Then thinking about leaving altogether and then maybe just a change of post and school. I am going to have to seek advice on this, as I am sure there are ways that they have to assist you to be able to function as normally as possible without it having an adverse effect on health or indeed your financial situation. I am also not back til Christmas either.

    The stress of our work is too much. It worries me so much that I will return and have a recurrence. I know the minute I go back, I will be out of my head with stress again. I am going to have to trust that God has a plan for me. That he will find me something to relieve this stress.

    D

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  • Little-Red-Corvette1
    Little-Red-Corvette1 Member Posts: 66
    edited August 2016

    Heathnet and DollyDimples

    I hear you on the stress and work subject. Even though my MO said I could work through my treatments I think he's nuts! The stress of BC is enough stress for anyone, but I already suffered from horrible anxiety attacks specifically related to work and finance. I will not do that to myself. He did say he would put me out as long as I wanted so I decided on February the end of my treatment.

    In the meantime I've had my bank/ check card frauded in the amount of $1117. They told me 7 to 10 days to rectify. Well I was in the bank today in tears! It was 9 days and they had not done anything! How can they do this? They finally gave me provisional credit.

    Then today I get this big packet of papers from my companies disability insurance carrier for the state I live. Looks like my original disability for the surgery was until 7/25/16. Although my company approved my leave until February when I applied now I have to struggle through red tape to receive a paycheck. The lady assigned to my case has no compassion.

    This stress is giving me such anxiety I can barely function. Never mind work.

    End Rant

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  • bbbb
    bbbb Member Posts: 66
    edited August 2016

    Dolly and Heathet - I do understand both of your positions on working while taking chemo and not working at a stressful job right now. I totally agree that we must put our health first. Having said that, I am going back to school on Thursday. First, I only have 10 sicks days, I carry the insurance for my family and I do want to go back. I do have the approval of my MO but I am worried because my next infusion is August 8 and the kids come back August 11th - which is usually my worst SE day. My principal is prepared and is totally supportive saying she will do whatever I need. I hope it all works out because I really do want to work. We have new curriculums this year and think it is going to be a great year and I don't want to miss it. My RO also assures me that I can work during radiation and that they will schedule my radiation treatments after school. I saw MO today and we worked out a plan for fluids and some additional meds for SE to hopefully help me make it the first day. Praying and trusting God that this will all work out. Worst case scenario is that I will be out a week or two after the next two infusions and then I will be ok, just take a cut in pay because I will not have enough sick days. It really shouldn't be like this, having to worry about insurance and pay when you are fighting cancer but the bills keep coming in. I just wrote checks yesterday for medical bills and used my ENTIRE monthly check all on medical bills. I have the insurance from work with the lowest out of pocket maximum and still it is rough! I will not give up or give in! God is good all the time and He has a plan for each of us. Praying for you both as you make decisions about your teaching careers.

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  • labscientistmom
    labscientistmom Member Posts: 287
    edited August 2016

    bbbb,Heathet and Dolly: the 2nd grade teacher at my son's elementary school does team teaching. Maybe that's an option for you? Just throwing it out there. and bbbb, I agree, God has good plans, all the time, his mercies are NEW every morning!! He holds it all, and we can trust Him to make something beautiful out of this crazy broken thing called cancer.

    Dolly: thanks for the good wishes for tomorrow. I am HATING the steroids, they keep making my ankles swell. YUck, YUCK, double yuck! My "men" are getting over their colds, just my husband's cough is hanging on . My sinus headache was better today. The bleeding is better some days then others, but sore face every day. I finally got the authorization for the ENT guy, turns out he's only there in the am hours and they didn't have an appt for me til END OF AUG!!! I was about in tears on the phone, really,???? how is that helping me AT All with a bleeding sinus that's been going on for three weeks??? I got call back from the RN for an appt week after next, which is sort of marginally better....they agreed to call if anything is sooner. ""Sigh** oh well, we will see what the oncologist says tomorrow. Had a good appt with lymphedema physical therapist. She was impressed by my care team of Dr's, said I was blessed to have each of them as they are not usually available for new patients. I am blessed! Will have 9 more appts where they will help get fluid moving again and stretch my underarm and bicep where the lymphnodes were taken out. All to get me ready for rads in Oct.

    Yay, tomorrow is next to last weekly taxol! glad to finish strong with A/C chemo and be done with it!! No more cancer!!

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  • justmetoo
    justmetoo Member Posts: 19
    edited August 2016

    Acie, Group

    I'm doing well, the chemo caught up with me on Saturday and Sunday extreme fatigue. No vomiting but nausea was present. So my question of the day is as time goes on will the Chemo take more of a toll on your body.  I have 3 more treatments of Adriamycin & Cytoxan left followed by 4 treatments of Taxol. Just wondering if anyone built up a tolerance and the side effects for each treatment were pretty much the same.  Hope all is well, I know that Chemo is part of the treatment plan, its tough but I can do this.



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  • justmetoo
    justmetoo Member Posts: 19
    edited August 2016

    Labscientistmom

    So glad to see your message you give me hope at the end of the rainbow. Glad you are finishing Chemo soon.

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  • Little-Red-Corvette1
    Little-Red-Corvette1 Member Posts: 66
    edited August 2016

    Justmetoo I've had 2 treatments of AC and my MO Said it gets better with each. I'm not sure but this is my off week and other than some nausea and bouts of fatigue it's been manageable. The biggest issues I have are eating because of nausea and going to the bathroom because of what I don't eat Ugh!

    Labscientistsmom So happy for you! Things are getting done! The lymphodema and the sinus situation being addressed! Almost there!

    DollyDimples isn't it just like us to worry? We hope for manageable side effects and when we get them we worry we didn't get enough poison! I'm the same! I wish I could just stop obsessing over this BC for a while.

    I wish everyone peace

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  • wheeler
    wheeler Member Posts: 1
    edited August 2016

    I started chemo June 2nd, but this is my first post (I have been hanging around for a while tho...). I did four rounds of DD AC and I have to say I was pleasantly surprised that side effects were minimal. No nausea whatsoever; I found that my taste buds were a little off a few days after treatments ie plain water tasted sweet; a little bit of mouth soreness. I got Neulasta via the little pod on my arm each time, took Claritin, and had no bone pain. I had two days through the whole thing where I just didn't want to get up off the couch. I had my first of four DD Taxol on Thursday and felt great Friday and Saturday but on Sunday was sidelined by fatigue and body aches. My fingernails hurt like they had all been smashed with a hammer, and the soles of my feet were very sore. I have been fortunate to be off work all summer (I work in a school) and I am concerned about going back next week but we will see how it goes. It has been very helpful to me to read about others' experiences and to know that I am not alone. Anywhoooo...that's my story. Hi everyone. :)

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

    Welcome, Wheeler! We're glad you've decided to join us! We wish you continued luck on your treatment journey, and look forward to seeing you on the boards.

    The Mods

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2016

    I am fortunate that over here in the UK when you work for a school you are covered for a full 6 months on full pay and then for another 6 months after that on half pay. So I am very very lucky. My money is OK so far and I don't have to worry about this. But I feel for all of you who do have to return to work.

    I am keen to get back to work at some point, but right now there is no way I am risking infection or stress. I have not had many SEs really but I still feel a bit tired at times. I think one of the reasons I am doing so well on this chemo is that I am NOT back at work.

    D

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