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Starting Chemo January 2022

Didn’t see the January thread so I thought I’d start one. I had my first chemo treatment today. I have 4 treatments total, 3 weeks apart. I decided not to get a port and that worked out okay today. I also decided to do Penguin cold caps. I’m posting a before picture … I’ll post just before watch treatment to see if it’s working. I cold capped for 9 hours today with the cap being changed every 25 minutes. I tend to run hot so the cold of the caps did not bother me at all and was actually kind of refreshing. Let me know how your chemo is going.

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Comments

  • Xipie
    Xipie Member Posts: 5

    Hello, I am starting treatment on Thursday. Just had my port placed today so I am super sore. This was the second attempt since they couldn't get it done with general surgery, Radiation Intervention has to place it. I will be doing THCP 6 treatments over 4 months.

  • nns121317
    nns121317 Member Posts: 102

    Hi Xipie and Pokemom1959! I've already completed 4 rounds of AC, but I start 12 rounds of Taxol on Thursday. Mind if I hang out with you?

    Xipie, I hate my port and can't wait until I can have it removed - it tends to get bumped a lot and pretty much stays sore. I've lost weight, and it's so prominent you can see it going over my collarbone and back down my chest. If you have the numbing cream, it makes a world of difference, and I sometimes use it just to take the edge off.

    Pokemom1959, my center didn't offer cold capping and doesn't allow someone to stay with you, so I've lost my hair, but I'm curious to see how it works! Fingers crossed it protects your gorgeous strands. How are you feeling today?

  • hippmark
    hippmark Member Posts: 92

    Hi Pokemom (and others),

    I start chemo Jan. 31 and am trying to get all the things together I need to take (since no one can be with me). I too am going the cold cap route with Dignicap. I loved seeing your photos! I will be on 4 rounds of T/C 3 weeks apart. My MO said for 4 treatments not to use a port. We'll see how that works! I will also be using cold hands and cold feet gloves and socks. I'll be an iceberg because I detest cold! My total treatment with the caps will be 6 hours.

    I'd like to see how everyone is doing! Nice to have a new thread for those of us just starting.


  • pokemom1959
    pokemom1959 Member Posts: 67

    Hippmark- I took a heated throw with me and it worked really well. I also had my feet and hands gloved but it really wasn’t too bad. The heated throw helped a lot.

    I had my Neulesta shot today - I took the Claritin before hand but am having pretty good joint and bone aching. I’m taking Tylenol but that doesn’t seem to be doing too much to help.

    I haven’t had any nausea yet - but then again, I’ve been taking the anti-nausea pills every time I feel even a bit queasy.

    I do have quite a strong metallic taste in my mouth.

    I’m not really sure how I am doing emotionallly - on Saturday my 89/almost 90 year old dad fell at home and broke 2 lumbar vertebrea. We ended up having to take him off life support last night, so I am devastated because of that.

    Best of luck to all of you - I’ll keep you updated on the cold capping and other side effects.

  • Emeraldeyes12
    Emeraldeyes12 Member Posts: 1

    Yesterday was my 4 th chemo day out of 12. I use Penguin Cold Cap. I bring my heating pad works great No hair loss yet. I also ice hands and feet prophylactic. My ANC was a little over 1 but able to do treatment. So far fatigue, vision a little fuzzy at times and constant runny nose has been main side effects.

  • Ratched28
    Ratched28 Member Posts: 7

    Hi ladies,

    I had my first chemo January 18. I joined the December thread, but I’d like to be on here as well. The more info the better. I’m on day 16, and surprised I don’t have any hair loss yet. I didn’t feel like bothering with the cold cap, but I certainly hope it works for all of you. My worst side effect has been stomach issues. Lots of diarrhea and cramping. Also, my nose has been really sore and runny and today was full on nose bleed. Saline spray seems to help make it more comfortable. Headaches off and on too.

    Can you please tell me where you got the cold gloves for hands and feet? I’d like to try them with my next treatment. Thank you!

  • Xipie
    Xipie Member Posts: 5

    Had my first chemo treatment Thursday Jan. 27th. Im experiencing severe nausea. It is so debilitating and nothing they have prescribed me is working. I think I'm done, I can't do this again.

  • pokemom1959
    pokemom1959 Member Posts: 67

    Hi Ratched - I got my cold gloves for the hands and feet from Amazon. I got extra cold packs so I could rotate them in my ice chest throughout the infusion.

    My worst side effect from the chemo has also been GI issues and headaches. I’ve tried to stay ahead of the headaches by taking Motion before they hit, but yesterday everything got away from me and I was feeling pretty crappy. I’m trying to eat smaller meals. I also had pretty good fatigue and bone pain (ankles and knees) after the day-after injection. Hopefully now that a week has passed, I’ll be feeling better for the next couple of weeks until the next treatment.

    Hope everyone is doing well. Xo

    Debbie

  • DG2021
    DG2021 Member Posts: 13

    Hi everyone,

    Like Ratched28, I began chemo in January (the 10th to be exact) but had been following the December group. I just did my second round on Monday, January 31. Like Hippmark, my schedule is 4 rounds in 3 week cycles. Chemo = Taxotere and Cytoxan. I did not do the cold capping. Hair 95% gone by day 19 when I took a comb to it in the shower and combed it out with conditioner in it. Then we buzzed what was left. Top of my scalp still a bit sore from fall out process, but fading quickly. I have been using the OPI Nail Envy and cuticle oil and that is helping nails. Claritin has been very helpful for bone pain and so far anti nausea pills work - fingers tightly crossed! I find the dexamethasone to be really hard to deal with. Tired but can't sleep.

    Pokemom1959, I too felt a ton better the two weeks after an infusion week - a real relief. Am finding the whole week after an infusion totally knocks me back with lots of fatigue but unable to sleep, deep achiness, and overall feeling really off.

    Xipie, your first experience with the chemo and nausea sounds really awful. Hoping your medical team can get you some relief soon!!

    I also agree with the smaller meals strategy - super helpful! Constipation is the digestive issue that arises for me, but Miralax has been helpful and gentle to an overloaded system! Plain water tastes really chemically, and the Biotene that was recommended has worked for that.

    Take care all and good luck with the cold capping - I see so many with good results.

  • SDG123
    SDG123 Member Posts: 1

    Started Chemo on Jan 22, 2022. Doing good so far. Hair started falling out a little bit today but still have 95% of it but no it will all come out. I’m in Canada and do treatments at the Tom Baker Centre in Calgary, Alberta. I’m doing FEC-D (red devil) so I receive mine by IV every 3 weeks. Still have another 5-7 treatments to go and then surgery will follow after. Glad to be part of a group that can share how we’re all managing. We are Warriors. We got this

  • hippmark
    hippmark Member Posts: 92

    First round of T/C was Tuesday. I felt great yesterday. But then they gave me "the shot" yesterday. While not too bad, I feel more pain in the areas I already had pain in them! More fatigued today, which I was surprised about since this is supposed to be the "easier" week.

    I did use the Dignicap for the first time and almost froze myself back to the ice age. Mine has the portable freezer machine attached to it and so for 6 hours, I had freezing air blowing into my scalp. Ugh. I was a human popsicle.

    I agree about the small meal strategy. I'm hungry but not hungry at the same time. No nausea so far! I like the description of you feel just "really off." It's an odd feeling.

    Pokemon, I am so sorry to hear about your Dad. How are you doing plus all of this?

    Wishing everyone well!

  • pokemom1959
    pokemom1959 Member Posts: 67

    Hi All - Glad to hear that everyone is doing relatively well. I am so thankful that there is no nausea - I think that and the hair loss were the things I was most worried about. Funny thing - before I started the chemo, I was having severe sciatica almost every morning. I was going to physical therapy but nothing was helping. My oncologist had me stop taking the Anastrozole a week before chemo and now, 2 weeks later, the sciatica is completely gone (silver lining) - I'm going to have to find something other than Anastrozole to take after chemo/radiation.

    Hippmark - although the day of and the day after treatment I felt fine, once I got the "day after shot," I started having issues with bone pain, GI issues and fatigue. Other than the fatigue, everything pretty much disappeared after the first week. Hang in there - next week will be better. Take the Claritin for 5 days (on the day of the shot and for 4 after) and that should help. I actually enjoyed the cold capping - helps with the hot flashes - LOL. So far so good with the hair - it all seems to still be there.

    Trying to deal with all of the physical and the emotional associated with chemo and then putting my dad's passing on top if it has been really hard. I just keep taking my Lexapro and praying. I know my dad would want me to push forward with the chemo and to get through it, so that does help. Fortunately, I'm a pretty strong person and have an amazing support group. Thanks for asking. :)

    DG - "Red devil" does not sound like fun. I'm sorry you have to go through that.

    Hope everyone continues to do as well as can be expected - chins up ladies! You all are in my thoughts and prayers.

    Debbie

  • Ratched28
    Ratched28 Member Posts: 7

    Hi ladies,

    Hope everyone is doing ok. Has anyone experienced edema or swelling in the feet and face? I did a search, but most of it came up arm or breast swelling. I’m on Day 18 and this started yesterday. I have a follow up appointment with NP Monday, so I’ll see what she says.

    The hair is falling out at a rapid pace now. Thinking about shaving it tonight. I’m second guessing my choice not to cold cap. I’m supposed to get my wig Wednesday, so hopefully that works out.

    Healthy wishes for all of you!

    Deb ( I’m a Debbie too Pokemom

  • pokemom1959
    pokemom1959 Member Posts: 67

    Hi Deb - I’m sorry to hear about your edema. I have not experienced that myself. Even though I’m cold-capping, my hair started shedding today … not a ton, but definitely more than normal. My husband was picking my hairs off my black shirt (thanks honey) and when I ran my fingers through it, I’d get a few hair each time. I know that this is normal, even with the cold-capping, but it’s worrisome. All the other symptoms seem to have subsided after the first week (knock wood), so looks like I have another week of feeling pretty good before the next treatment.

    Hope everyone is doing well. Hugs to all of you!

    Debbie

  • hippmark
    hippmark Member Posts: 92

    Well, I got the worst of the Neulasta shot. It was bearable 2 to 3 days after with flu like pain. But days 4 and 5 (today) have been severe joint pain. Unbearable unfortunately. I thought it would get better as the days went on, not worse with the shot. OTC meds would not even touch it and the Claritin did not seem to help much. Hard to say. Had to take a Percocet from my recent surgery and called the nurse to get a prescription. That level of pain was unexpected. I guess everyone is different.

    Fortunately, no nausea. Just some manageable GI issues and metallic taste.

    Debbie, hair has not started to shed yet, but I am a week behind you in the cold cap arena. I know it starts around day 14-ish and they say to expect a "healthy" shed starting at that time.

    I hope everyone is managing and the SE are those that can get better with a little time and TLC! Take great care. Thinking about all of you!

  • pokemom1959
    pokemom1959 Member Posts: 67

    Hi Hipp - I had pretty bad joint pain after the Neulasta shot too - it lasted for about 4 days. I hope yours clears up soon. Isn't the metallic taste awful? It seems to come and go for me but it's mostly here.

    The hair sheading is not horrible, but a more than normal - just a little disconcerting under the circumstances. I'm sure it's fine.

    Hope your pain stops soon. Big hugs.

    Debbie

  • nns121317
    nns121317 Member Posts: 102

    Last Thursday was my second dose of Taxol. Overall, I'm tolerating it well - just some joint pain, which is substantially better with Claritin. The bigger issue is the cardiotoxicity that has developed from the AC. I met with the cardiologist this morning, and I'm going on a beta blocker and ACE inhibitor to better protect my heart while I finish Taxol. The cardiologist was optimistic that the damage can be reversed, but we'll continue with frequent labs to keep a close eye on it. I'm extremely athletic, so a cardiac problem would be a huge quality of life issue for me. I was really worried I'd have to choose between finishing Taxol or protecting my heart, so this visit was a relief.

    Hang in there everyone!

  • pokemom1959
    pokemom1959 Member Posts: 67

    Oh no NNS! What type of heart problems were you experiencing? That is scary. Other than that, glad your side effects are minimal.

  • nns121317
    nns121317 Member Posts: 102

    It started as heart palpitations, so my husband gave me a smartwatch for our anniversary to track my pulse. My resting pulse was routinely over 100 - something as simple as slicing a banana would cause my pulse to be 130 or so, and even basic stretches or light yoga would cause it to go over 160. I had a couple EKGs which showed a long QT (how long it takes your heart to recharge between beats), and an echocardiogram showed my global longitudinal strain (a measure of left ventricular function) was reduced almost 40% from before I started chemo.

    My cardiologist said the cardiac side effects of chemo used to not be a big deal, because people didn't live long enough for their heart to be life-limiting. Now that cancer treatment is better, and treated patients are living longer, protecting the heart is super important. The cancer center where I receive care recently added an onco-cardiology staff to better address these needs.

  • pokemom1959
    pokemom1959 Member Posts: 67

    Wow - best of luck to you. I'm so glad you are getting the care you need!

    All this cancer stuff and everything related to it SUCK!

    Hugs,

    Debbie

  • Seymour29
    Seymour29 Member Posts: 2

    I started TC November 1 using the DigniCap. I also had the chemo port. The tech could not access port and had to call in an experienced tech. What a nightmare.

    One week after chemo, I got up to use the restroom for the 3rd time that night and did a face plant on the door frame shattering my nose. It was attributed to dehydration from both the diarrhea and Lasix that I was on. Spent night in hospital to see if any other cause was evident and nothing showed up. Went back 10 days later to repair shattered nose and had difficulty with anesthesia so spent another night in hospital.

    This oops delayed my chemo by 3 weeks. Hair loss began Nov. 25th. Was it trauma or chemo?

    Next chemo Dec. 13 but they were unable to access the port so had to do via IV, hair loss followed 12 days later.

    Third chemo Jan. 11, 2022. Won't even try the port.

    Final chemo Feb. 1, 2022. Some hair loss a week later. I have not shaved it as it is still acceptable.

    Thank goodness that useless port comes out Feb. 11, 2022.

    This has been a crappy journey but I have been fortunate not to have any adverse side effects aside from face plant (that was enough).

    Looking forward to new hair growth and my immune system recovery.


  • nns121317
    nns121317 Member Posts: 102

    Seymour, that sounds awful! I tore my calf muscle the week before my surgery, and having an extra trauma to deal with is a real hassle. I hate my port, it's super sensitive, and I can't wait to get it out!

  • pokemom1959
    pokemom1959 Member Posts: 67

    OMG Seymour! Talk about adding insult to injury! I'm sorry you had to go through that. Cancer sucks all by itself - no face plant necessary! I hope you are feeling better. I elected not to have a port (4 treatments) and fortunately they were able to access a vein my first session. Fingers crossed for the other 3 (next one is Monday). Just found out I get to have a colonoscopy next week 3 days after my treatment. The fun never stops.

    How much hair do you think you lost, percentage wise? I can't see too much difference when I look in the mirror, but it seems like there is excessive shedding going on (it's all over my shirts and ends up in my food/mouth which is pretty gross. A friend down the street did the cold capping and kept about 85% of her hair - I would feel so blessed if I kept that much. I honestly don't know what to expect .. it just seems like the amount I'm shedding right now is alot and if it continues, I won't have much left.

    Hugs to all - hope everyone is having a better day today.

  • hippmark
    hippmark Member Posts: 92

    Seymour so sorry for your experiences. Looks like today is the day to remove that port! Congrats! This is hard enough without any "extras" thrown our way. I think I am having a hard time and then I read about others who got those extras and I try to feel blessed. I did not do a port as recommended from my Onc. with 4 treatments, but my veins are starting to protest a bit right now with the weekly blood work. Every time they take it, my veins are starting to not be quite as cooperative.

    NNS I'm so glad to hear that you have found something that will help protect your heart and that you have made it through

    Pokemom, you might recall I am one week behind you in treatment. I am using the Dignicap. So far, my hair has not started to shed. But, I have been told to expect a heavy shedding 14 to 21 days after. I am only day 11. So maybe this is all the normal shed period for you and will start to ease off after this initial time. I am not combing my hair at all and only wash once a week (as per what they recommended). I wear a wooly soft cap out. So, by the time Monday rolls around and I comb before washing, I expect to see the shed start plus the 100 plus hairs a day we normally lose anyway. 800 hairs plus the shed! I am also using Daniel Field products on my hair/head. They are chemo specific products to use with cold capping. Time will tell and soon enough, but I will keep you apprised and want to hear your journey with Penguin. While this is certainly not the most important aspect of chemo, I wanted to try to retain something from my "past life." Wishing you the best for your second treatment!

    Sending my very best wishes to all! You ladies provide me strength and hope.

  • pokemom1959
    pokemom1959 Member Posts: 67

    So, I did not know this, but apparently before washing your hair, you are supposed to comb through it to get as may of the dead hairs out as possible. I took a shower this morning and when I got out, my hair was completely matted. Like could not comb them out no matter what mats. I called my cold capper and he said I would do more harm than good trying to comb the mats out so he suggested I get it cut just above the mats. I had a good cry and then had an F this moment and cut just above the mats myself. Going in to see my hairdresser in a little while just to have her even it out. It still seems like I am shedding quite a bit of hair and I can see a few spots where there is not as much hair as there used to be, but I do still have hair so that is something, right. Onward and upward.

    image

  • hartnsole
    hartnsole Member Posts: 24

    Hi all,

    Starting treatment on Thursday 2/17. I didn't see a Feb thread so I'm camping out here. I'll be on 4 cycles of DD AC (every 2 weeks) followed by 12 weeks of weekly Taxol. I'll be taking Zarxio shots for 7 days for a week after AC and Dexamethasone steroids during taxol. Just got my port placed today, and while that wasn't a fun experience, I'm hoping it makes blood draws and chemo sessions easier since my veins are notoriously problematic and they've damaged them more with multiple unsuccessful sticks the last few weeks.


    Trying to stay positive and hoping the tips here make the side effects more bearable and that it results in significantly shrinking my lumps (left breast and lymph node) so that other treatments have a higher rate of success.

  • hippmark
    hippmark Member Posts: 92

    Hi Hartsdale. Most of us on this thread cross over months from other chemo starting dates. My actual first chemo was Feb. 1, so technically my start chemo is February. Feel free to camp out here!

    I also went back to December chemo start dates to see their journey. One thing I can tell you is that everyone seems to react to chemo differently. I was expecting rough days to be 3 to 5. It actually turned out for me to be 3 to 8. So hard to predict. I learned some lessons from my first round that I will use for my second round (the 22nd).

    I can tell you that for myself, I took the anti-nausea pill like clockwork and never had nausea. I had significant bone pain from Neulasta shot and required pain medication (you are getting a different shot I think). Doesn't hurt to have something already on hand. Plus, if you get some big "D" challenges, take the medication to help it right away. I waited and regretted that decision.

    Please post any questions or comments. We are all in this together! Best wishes for your first round!

  • hartnsole
    hartnsole Member Posts: 24

    What are big “d” challenges? Sorry, still don’t have all the lingo down yet lol


    I’m sitting in the waiting room waiting for my appointment atm. Got here a bit earlier than I needed to.


    Yes, I’m taking a different medication called Zarxio. Found out yesterday that I’ll be taking it days 3-9. I’ll be picking up some Claritin because of recommendations here just in case. I believe the thought on Zarxio is a smaller dose may not hit the system as hard. Not looking forward to giving myself so many shots, but if it helps, I’ll get through it.

  • nns121317
    nns121317 Member Posts: 102

    I'm currently getting my fourth infusion of Taxol. Saw the MO yesterday, and we're going to dose reduce to 80% because of my neuropathy. I'm also doing acupuncture. Still no steroid pre-board, which I am happy about. Overall, Taxol is more tolerable than AC.

    Big D = diarrhea. As opposed to the Big C.

  • hartnsole
    hartnsole Member Posts: 24

    NNS - Thanksfir clarifying. I probably should’ve figured that one out lol


    I just finished my first session and it wasn’t so bad. I mostly just felt the coldness of the fluids running through my veins. They gave me zofran and I believe decadron as premeds with instruction to take zofran twice a day for 3 days to help with any nausea.

    I felt a bit of burning in my nose (the feeling you get sometimes when pool water goes on your nose) so they stated they’d administer the cyclophosphamide over an hour instead of 30 minutes next time.

    I’m anemic, but they didn’t give me an iron infusion. We’re going to monitor my levels and see if it’s needed next time.

    I was told to drink at least 2 liters of water to flush out everything so it isn’t just sitting in my system longer than it has to. I was also warned that urine may have a reddish tint due to the adriamycin which is normal.

    My mouth feels a bit clammy, but I don’t know if that’s from the chemo or me just over analyzing everything.

    I’ve read that the first day isn’t when the symptoms hit, so hoping to still report positive responses in a few days