Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

Starting Chemo in November 2017

145791064

Comments

  • frozentoes
    frozentoes Member Posts: 48
    edited November 2017

    IntegraGirl, how did you hear about Valter Longo protocols? Was that recommended by your MO? I hadn't heard of this before and started googling and some of the research sounds really interesting. I'm really intrigued by the potential to stimulate the bodies immune system. Did you see any effects during chemo, beside minimize SEs (which sounds great btw)

  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    It is interesting to learn how some people need the port and then some don’t. You have to trust the medical profession choices as we are at their mercy. Not always a trusting feeling for me at least.

    Frozentoes - it’s nice to hear you had a good day with your daughter and your mood improved. I miss my motherhood with my own daughter, and when I read about all the moms mentioning their kids, it takes me back how I enjoyed raising my own. Although I had just one child, but I loved watching her grow. Those years go so fast, so enjoy them while they are with you. Once they leave home - your life changes.

    Unfortunately, my daughter didn’t want kids, and all I have for a grandchild is one spoiled cat! She and her hubby do not live here, so I hardly ever see them. We do talk at least once a week.

    BTW - I breast fed that little burger, and I sayso much for breast cancer protection!

  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    Rljess...I guess you could use more cream. However, I really don't think it made a big difference since I haven't been using anything this time around. On occasion, I waited until I got to the facility to apply the cream which saved about 1/2 hour of time.

    cwb...I remember that "shedding in the shower" with my initial diagnosis. It is traumatic, even though you know it's going to happen. With this treatment of Taxol (only), I was told it might take 3-4 infusions before I start losing lots of hair. I have an appointment on Tuesday to look at wigs. I have some from the first time around, but I'd like something more stylish.

    Mermaidmom...You sound like you have a great plan and are ready to begin this journey. No lymph node involvement is a big PLUS!!

    Blair...I was 64 years of age when I was first diagnosed. I'm sure there's a reason for them not putting in a port. I'm 5'2" and 130 pounds now. But, I was a little heavier back then. With this new diagnosis of MBC, and only getting Taxol, my onco still insisted on a port. I'm sure facilities are all different in their approach. I had six rounds of chemo. Like Mermaid said, maybe the number of rounds makes the difference.

    Frozentoes...Wishing you more fantastic days ahead! Your daughter sounds adorable!

    Integragirl....That is interesting about fasting before and after! Worth it for sure, for those few side effects.

  • IntegraGirl
    IntegraGirl Member Posts: 48
    edited November 2017

    Hey FrozenToes, I don't remember how I came across the Valter Longo studies but they sounded legitimate and intrinsically made sense to me. My MO had never heard of it but said he was fine with me doing it and after I was through chemo he said that I may have made a believer out of him. My blood counts were normal throughout and my physical SEs were fairly minimal. I drank a ton of sparkling water (flat water tasted awful to me) and ate my fill of carrot and celery sticks :). I ended my fast with a celebration of 2 egg mcmuffins, hash browns and a large cappuccino every time :).

    Two other resources I've found helpful are Dr Love's "Breast Book" and Dr Servan-Schreiber's "Anti Cancer" book. Dr Love is a breast surgeon and her book covers most everything BC. She also had leukaemia herself which gave her a different perspective. You can get it on Amazon. Dr Servan-Schreiber was a physician and a medical researcher who ended up getting brain cancer. He went through traditional treatment, had a relapse and then he focused on how we can change our physical environment to make ourselves less hospitable to cancer. He lived twenty plus years after his relapse which he attributed greatly to his lifestyle changes.



  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    IntegraGirl...Thanks for the book recommendations. I've heard of Dr.Love, but not the other doctor. Sounds like good reading material.

    Hope

  • lizabethm
    lizabethm Member Posts: 105
    edited November 2017

    Hey Everyone,

    Just had first round of T C chemo this past Wednesday, November 15th. I also did Dignicap.

    I feel like a truck ran over me and then backed up and rolled over me again. How long after TC did you start to feel like you didn't have a wicked case of the flu?


  • Aymerz33
    Aymerz33 Member Posts: 41
    edited November 2017

    LizbethM i had the same treatment on November 6th and it took me until that Saturday to feel normal again. Hoping it's short for you! Today I feel 100% back to normal

  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    LizabethM - feeling any better? Hope the worst is over at least. Are you taking anti-nausea pills and other things to try and stay on top of the yuckiness? (I'm sure you are, just wondering how often you take the drugs and how well they are working).

    I will be taking same drugs on the 30th. We have very similar diagnosis, so following you. My surgery was a day after yours.

    Wishing you a speedy recovery!


  • rljes
    rljes Member Posts: 499
    edited November 2017

    Hi Everyone - Does anyone feel like they are spending a fortune on "stuff"?  Since my smartphone doesn't have very good reception where I live, I'm having a land line installed tomorrow.  I'm tired of missed calls and the thought of not being able to call for help is unsettling.  When I explained what it was for, they waived the installation fee.  

    Blair2 was asking about ports - why some have them and some not - I think its how accessible your veins are and how many treatments.  My arm (can only use the one that didn't have cancer/nodes) is full of scar tissue, almost impossible to find a vein.  I will have treatments every 3 weeks for a year, plus the labs inbetween.  (My port still hurts - ouch - 7 days post op) 

    cwb - I was thinking of you today as I was on my shopping spree and bought a hairnet for when my hair starts 'shedding'.  I also bought a silk pillow case as suggested.  I'll probably just take scissors and start chopping when it starts to go. I had it cut really short last month and hasn't grown at all - in fact my hair is thinning. 

    My moment was in the hospital after my double mastectomy, and the aide helped me take my first shower. Looking in the mirror was shocking. (going flat) Then the aide asked me why I was crying - Duh! That snapped me out of the moment. 

    Meowmmy - have you a chemo date yet?  I know what you mean by wanting to cup your hand over your port.  I keep doing that.  plus I keep accidently hitting it.  I wish I could put some sort of 'cup' over to protect it.

    Thinking of All of you... rlj 

  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    Oh yeah - my money is going fast. I too pay $45 every time I see a doctor. (You have on average 5-6 doctors in this mess). On Medicare, and I also pay 20% of labs, treatments or anything that isn't considered preventative. I can't qualify for Medigap because of having heart disease and cancer. The underwriters are tough. Any tier 3-4 drugs are costly. I had to visit my dentist recently thinking it was just a cleaning and ended up having two extra fillings as a protective measure on a couple of crowns at a $400 cost.

    Then you have costs to OTC drugs, wigs, scarves, hats, hairdressers, foods, gas - making a thousand trips to and from doctors, and wasting friend's gas taking you to the special visits. On top of the bills, there's Christmas presents to buy and end of year taxes. Not good! Devil



  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    Good morning...

    Just checking in to see how everyone is doing. So sorry to hear those "trucks" are out and about hitting you gals. I can relate back when I was initially diagnosed and on Taxotere and Cytoxan...that truck hit me about 5 days after my infusion, lasted about 5 days and then I felt back to normal...just in time to go back for more! Now, that I'm only on Taxol, the only side effects so far are a bit of achiness, constipation, a little fatigue - not much. Of course, this being a weekly infusion, I'm thinking the side effects might get worse on down the road. Oh...I forgot, my hair is thinning rapidly. I have an appointment this evening to go look at wigs. I have four from last time, but I think my face is thinner than back in 2010 and they don't look so "cute" anymore.

    Wishing all of you a pain free day!

    Hope

  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    Blair...I'm fortunate having Medicare and a good secondary insurance to pay what Medicare doesn't. I have no co-pays, deductible etc. However, I can relate to the OTC costs and necessities. And, I'm not looking forward to those taxes! I have a big family and we always bought a gift for everyone at Christmas...even the adults. This year we decided to do a white elephant exchange with a gift of $40.00 and only buy gifts for the "little ones". There are only three little ones, so it will be a much less expensive Christmas. I have 9 grandkids, the youngest being 14...then, there are the nieces and nephews, boyfriends, and girlfriends. I will get my grandkids a gift card, but it will be minimal....nothing like in the past years.

    Hope

  • frozentoes
    frozentoes Member Posts: 48
    edited November 2017

    I'm getting treatment number 2 as I type and so far so good. :D According to my doc the "truck" that got me last week was probably the steroids more than anything. I'm hoping that's the case as they halved the dose today.

    I can sympathize with you ladies on the cost front. The copays really add up. I read that some of you live in smaller towns or rural areas. Are there social services in your area? There are some groups like the American Cancer Society that you can contact online or over the phone that can help you find resources to decrease costs. I'll try to find the link to the group I found but there are sending me a free scarf. It's not much but it's something. :)

    Hope everyone has a great day!

  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    Nonahope - you are so fortunate to have a large loving family! I wish I had more family surrounding me. The little ones are important at Christmas time, and it's great you all have a plan to keep costs down. If I had known I was going to have the two worst diseases in my life, I would have started a Medicare supplemental plan that covers everything, but I was too late, and figured my heart disease would be the only hiccup in my life. Since it is the open enrollment period for new Medicare plans, I researched them all for my county, and found mine was the cheapest for an Advantage plan. I have the lowest out of pocket cap, so it's all I can stick to. I'm a thrifty person, and always have emergency money, but I just didn't expect this - who does? You are lucky that you chose your plan when you did.

    I don't look forward to being sick at holiday time. I have no patience for feeling sick. If it's mostly fatigue - so be it. Just don't make me throw up - I'm going to take those anti-nausea pills from the day I start chemo!

    I have a question - why do they tell you to eat small meals when you are apt to feel nauseated? Won't the food nauseate you more?

  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    Frozentoes...I got that scarf! There are many freebies for cancer patients. I got a great cookbook, "Eating Well Through Cancer", with my first diagnosis 7 years ago. You can Google and probably find a site that will send it to you free. It is a GREAT cookbook! I use it all the time. Lots of great information on what to eat with each phase of blood levels i.e. neutropenia etc.

    Blair...Yes, I am very fortunate with both family and medical insurance. I don't have a Medicare Advantage plan. I have traditional Medicare and Anthem as my supplement. I've had Anthem insurance all my life, so kept their secondary plan when I went on Medicare. It's not cheap, by any means, but I'm sure glad I have had it with what I've been going through for the past 7 years. I've never paid a penny for anything, including surgery 7 years ago and those very expensive Neulasta injections at that time. It's a struggle sometimes to pay the price, but boy is it worth it.
    By all means, take the nausea medication. They do put an anti-nausea drug in your pre-meds. You may find you won't need it for a few days. I took it initially and then would not take it, just to test the waters. I found I seldom ever needed to take it. And, you are on the exact chemo duo that I was on in 2010. I think keeping a "little bit" of food on your stomach helps...not sure why. I imagine a heavy meal would not be kind to your tummy.

    Hope

  • magari
    magari Member Posts: 335
    edited November 2017

    Good morning, all. I can relate to the spending money on "stuff." Although I have good insurance that covers just about all of my actual "medical" costs, there are still the OTC meds, "accessories" such as the wedge pillow I needed to help me sleep on my back post-mastectomy, pill reminder box, seatbelt covers, etc. I went to my first physical therapy session yesterday (expensive and not covered by insurance) and found out that I have cording.... I am also cold capping, which I am going to attempt to get insurance to pay for but am not hopeful about. The dry ice for that will be $50 for each infusion. To add insult to injury, it costs $35/day to park in the garage at my oncologist's office!

    There is a website called breastcancerfreebies that is worth a look.

    I went for my chemo "teaching session" with a nurse at the oncologist's office last night. Everyone was very nice, but it felt surreal.


  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    Thanks Nonahope for the input. I know everyone reacts differently to drugs. One of my bugging fears is my heart. I don’t want the sickness to wear my heart out. That’s a scare in itself. Surely I’m not the only one with a damaged heart having chemo, but I feel I’m all alone, and I am alone in that I live alone. This is when I need a family near by! I have three friends who said if I call in the middle of the night if case of an emergency, that they would wake up and take me to the hospital. I have this fear they won’t hear their phones ring!

    Which brings me to the next question- anyone here who has had chemo ever had a temperature above the 100.5? They told us at the chemo class to immediately go to the ER if your temperature got that high. Also to take it three times a day. Is that true for everyone? This is enough to scare the boo-sooks out of you too.

    Margari -I know what you mean about surrealism. Thanks for the freebie site.


  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    Blair....Before I had my first infusion of Cytoxan and Taxotere, I had to have a CT scan (total body) and an echocardiogram which will measure the ejection factor of your heart to make sure you can be given this cocktail. That was 7 years ago and things might be different now. If you haven't had an echo, I would ask about the importance of it.
    I never had a temperature during chemo. You would know if you had one - without taking your temp. I only took my temp if I felt like I might have a fever. These are all things we should be aware of, but don't be alarmed. It sounds so overwhelming what we have to "watch for" during this journey, but it is doable...hang in there!

    Hope

  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    Thanks again - I feel I’m a big pain asking so many questions. I made sure all of my doctors heard me out on my heart concerns. Last June, my primary doctor checked my heart out assigning a nuclear stress test, echo and an EKG was done prior to my surgery. The tests were fine and they told me I was actually in good shape for my age - stress wise physically. I also talked to my cardiologist a few weeks ago before I knew I would need chemo, but I let him know recently through my patient portal that I was having this done. All my doctors are in a huge network clinic in my town, (one reason I stick to my Medicare plan), so they all know each other. I also let my oncologist know who my cardiologist was. What’s interesting is they all stand up to each other with the famous shout out of “you’re in good hands”. It makes me wonder if it’s a clinic sales pitch they are brainwashed to say to all their patients. Nevertheless, I do like most of them.

    I think the temp thing is for infection, and since the immunity is down, it’s a situation like you say we have to be aware of. Just wondered if anyone ever had a temperature through their chemo experience





  • mkn86
    mkn86 Member Posts: 129
    edited November 2017

    hi Blair, my doctor had me get a 2D Echo every two doses of EC as Epirubicin was likely to cause heart damage. his way of monitoring. and also before switching me to weekly chemo took note of the Ejection Fracture before moving me to taxol+carbo. no advise yet on whether i'll need to get 2D Echo every so often with these meds.

    Re: temperature, you don't have to monitor all the time. if you feel fine then let it be. I start monitoring only when i feel a fever coming on. MO gave guidelines such as if my temp hits 37.8 (celsius) i have to start taking antibiotics immediately. and if my temp consistently stays over 38 for several hours, ten i have to go to the ER. because if your body is fighting an infection the doctors need to get ahead of that and help your body recover faster. ask your MO what their guideline are and then stick by it. some MO will say antibiotics at 38, ER at 39.

    i had a scare once where i went out and kept switching between warm temp and airconditioning in an afternoon (outdoor mall, instore airconditioning, eating al fresco) and even without cancer, an entire afternoon switching temps with big differences usually makes a person feel like they'll run a fever.

    I was between 37.6 to 38.2 for a few hours on a friday night but was so inconsitent i took a tylenol and slept instead. NExt mornig temp had stabilized but i was monitoring every 2-3 hours and restinguntil Sunday. Outside if that one incident i never stringently monitored temp otherwise i would be stuck and adding to my worries for no reason at all.

    ALSo helps to have an in-ear thermometer. nurses told me that in-ear thermometers take accurate internal temperature. compared to getting your temperature with the digital ones that take temp from forehead surface, or digital ones that still need to take temp via armpit.

  • rljes
    rljes Member Posts: 499
    edited November 2017

    I can't find a thermometer that works.  I have 3 and all show different.  I'll take them to chemo and compare. With the severe hot flashes - I can't tell if I have a temp or not.   I think I had a slight temp after my Port.  At least its stopped hurting so much - except when I hit it when I'm rolling over in bed or throwing off the covers during HOT FLASH.  Anybody else having Severe Hot Flashes all Night Long? My poor dog is freezing to death, while I have the window open. 

    I had the nuclear stress test. Mercy!  when they put me on the tread mill I was looking for the Code Blue shock cart! That was a strange feeling. They did have one of those old fashion Geiger counters.  (my heart was fine) 

    I posted this on Triple+ :
    I have all my pre-meds and arsenal of OTC's. I could open my own drugstore.  From the wise women that went before me - I plan to Hydrate/Hydrate/Hydrate, eat small meal before chemo, (some fast) take Compazine and Ativan every 6 hours afterwards, (Zofran is given during chemo) Steriods before/after, and have Imodium AD on hand on any sign of the BIg D.  (of course have plenty of things for the Big C) Mouthwash mixture of baking soda/salt and water all day long - and Claritin if I take Neulasta - oh, and don't forget the EMLA cream for the port.  Am I missing anything? 

  • PauletteK
    PauletteK Member Posts: 1,279
    edited November 2017

    Hi ladies, I haven't been here for couple weeks I'm trying to stop by more often.

    Rlj - I usually only take Ativan before bedtime, maybe you want to get nasal spray because taxotere will dry up your sinus, you don't want to have bloody nose. I actually have Zofran and Compazine, I take Zofran every 8 hours and Compazine as needed. Compazine actually made me sleepy.

    For temperatures I usually measure my temperature on my bad days make sure I don't have infection. I was blessed I only had 99 and I felt fine so I didn't take anything,

    I got half of the cvs in my house, also I use a lot of epsom salt I soak my hands and feet every night.



  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    Rljess - maybe wigs, hats and scarves? I have two thermometers, but no Claritin. Don’t think I can take neulasta because of heart, and I have my compazine (prochlorper- genetic), and lorazepam for craziness. I mixed some salt and soda in a small Tupperware bowel so that all I have to do is add it to water. I will do the same as you - don’t forget a bag of frozen pop cycles to help with hydration! (And maybe hot flashes - ?) i used to stick my head in the freezer when I had those moments

    Mkn86 - I won’t be on same drugs, but I haven’t been told that they will do any other testing for my heart. I will watch my temp, and yes - I should feel warm if I do have a temp. Sometimes I feel like I have a temp and don’t. I was surprised the nurse said to take it three times a day, but clinics vary I suppose with what they recommend. Did you have a lot of nausea with your drugs, or have you nipped it in the bud?


  • mkn86
    mkn86 Member Posts: 129
    edited November 2017

    @Blair, oh wow checking temp 3 times a day is a lot. maybe try that at the beginning only to monitor if your body reacts to any of the meds.

    for nausea, i didn't have nausea so much but i was given anti-nausea meds during infusion and a few oral ones. Emend is one of them along with another that i was required to take for 3 days after infusion.

    and during days when i have no appetite or to avoid nausea i just have small snacks and light meals. soups with veggies, chicken noodle soup, local congee (savory rice porridge flavored with garlic and ginger and spring onions with potatoes and chicken with a liiiiiittle bit of lemon juice), snack on roasted nuts. for some people, ginger tea helps too. :) on days when you have energy back, make food that you can freeze so you can reheat them on days when you don't have much energy :)

    they don't inject neulasta all the time here (or to all patients) so we do have considerable downtime. so my doctor was also very specific when ishoudl avoid crowds, wear masks, etc

  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    Blair...It really does sound like "your in good hands"....hang in there!

    mkn...The only kind of thermometer I've ever used is "under the tongue". That's what they use when I have my oncology visits, so I guess it's accurate.
    I didn't have to have Neulasta until after my 2nd infusion. After that, I had to go back the day after I had further infusions. That was when I was on Cytoxan and Taxotere. I'm hoping that won't happen while I'm on the Taxol. I didn't have the bad side effects that some do...so, I was fortunate in that respect.

    rljess...I think you covered those necessities quite well!! I have a hard time drinking water, but do pretty well buying the small 8 oz bottles of water. For some reason, they're not as intimidating...crazy, I know.

    Paulette...Does the Epsom salts dry out your feet and hands? I've been using CeraVe moisturizing lotion and hydrating lotion - recommended by my NP. LOL...I, too, have stock in CVS!!


  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    I've noticed many ladies here who have started chemo in the last week are not reporting. I hope they are ok and just busy for the holidays.

    Shaneswife - Maggieanne - Frozentoes- Neeliecor- Lizabethm?

  • orangedaisy
    orangedaisy Member Posts: 129
    edited November 2017

    I am 2 weeks past my first dose of Taxotere and Cytoxan. I was also given IV Aloxi anti-nausea and Decadron steroids and had a Neulasta pod inject me 27 hours after chemo ended. My fatigue was off the charts for about 5 days, especially in the AM. I was exhausted after getting up and making a bowl of oatmeal in the microwave. Then for another 5 days, I would tire really fast. About day 10, I started to feel normal again.

    On the 5th day my upper thighs, hips and pelvis hurt, and OTC pain meds and a heating pad didn’t help. I was taking Claratin, but had stopped the oral steroids after day 3 as instructed. The doctor had me take the steroids for 2 more days, and it helped.

    On day 3, I started having diarrhea, which lasted until day 8. I was taking a probiotic once a day, and increased to twice, stopped taking an antibiotic for recurring UTIs,and stopped drinking sugar free drinks with sugar alcohols.

    On day 11, I got an itchy rash on my hands. Saw the nurse today, and it is also on my back. They presecribed predispone pills, told me to keep taking Claratin, and take Benedryl at night.

    I’m getting minor nose bleeds. I’m using saline spray and coconut oil try to help keep the area moisturized. I need to get my humidifier going.

    I did not have any nausea. Food tasted strong for the first few days past chemo, and I only wanted bland foods. Now I’m eating anything, even spicy. It all tastes weird, but it doesn’t stop me from eating. Water tastes terrible. I have to squeeze lemon or lime in it or drink sparkling.

    I still have my hair, but it is starting to really shed. Hoping it holds on through Thanksgiving tomorrow.

    My blood counts have been good, and I haven’t had fever.

    Dreading starting this all over. 3 more rounds to go.

  • rljes
    rljes Member Posts: 499
    edited November 2017

    Hi my friends - Orangedaisy - Thank you for posting and detailing your first chemo. You are brave. I have a couple questions - I hope you don't mind:
    1.  Did you take Imodium AD when you first started having Diarrhea? I'm so sorry you had that for 8 days.  What did your DR's say about that? 
    2.  Neulasta injection.  Did you have your WBC tested before you were given the shot? How did they know you had low WBC counts? Or did they just assume with the combo your taking?  (I was told I would have to come in between day 7-10 for lab work and not be given Neulasta unless WBC count was low)   One would think there would be a home test for that - like a pin prick of the finger for diabetes test. 

    I take Prednisone on a daily basis - hopefully I won't have any additional rashes.  And my dog Truman takes Benadryl, I'll borrow his. :)   so happy for you Orangedaisy -that there was no nausea.  I hate that feeling.   I have saline nasal spray and gel (thanks Paulette) and I will add Epson Salt, just in case.  My freezer is small, so mostly soups it will be. I saw Progresso Soups has a new Organic line.  I won't be wearing a wig - hoping I have a well shaped head - :0 -  ordered a few beanie hats on Amazon. I'm suppose to get a "welcome package" upon first day of Chemo.  

    Blair2 - Ativan for craziness. That just about sums me up! This journey is making me c-r-a-z-y. 

  • PauletteK
    PauletteK Member Posts: 1,279
    edited November 2017

    Hope - good epsom salt to soak your feet will soften your feet and soak my hands also. After soaking then you can put whatever lotions you like to use.

    Orange - you should inform you MO on diarrhea so he can give you prescription of lomoti (?) to stop your diarrhea. I take cranberry pill to prevent UTI. Walking actually help fatigue, try to walk a little bit on your bad days. I put Nuun in my water it helps.

  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    Orange...I was told to take Imodium A-D if I had a problem with diarrhea.

    Hope