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Chemo starting April 2018

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  • urdrago71
    urdrago71 Member Posts: 500

    My update no change in lymphnodes, but since there pain in nodes and arm I went for Doppler today after chemo and no findings. Good news. rang bell 3 times... Other news, I dont come back to see MO until mid-October. Flush every 8 weeks and no more blood work. My tumor is still measuring larger the 1 cm, I will have follow up chemo. But formal discussion will occur once pathology comes back after Surgery.

    Thanks everyone for supporting. I'm going to take a little nap it's been a long day..

  • life1963
    life1963 Member Posts: 364

    YAY!! Undrago! Congrades on being done!!


  • gawarrior
    gawarrior Member Posts: 368

    Duffyzmom, no the MO doesn't have any suggestions other than the icing and l-glutamine I'm already doing. My feet seem better today, so we'll see. Maybe last week was just one of those weird things that you have once or twice, then they never come back. Sorry your arm is swelling again - good luck with getting your port out next week. Hoping that helps!

    InnaB, I'm glad acupuncture is helping so much. I understand why you want to get all your chemo treatments done. I feel the same about mine, being triple negative. Do you take Benadryl before or during the infusion? If not, that might help with the itching. (I'm assuming you do since they watch us like hawks during T, but thought I'd ask.) At least you're half done and will only have one left after Wed. Hang in there!

    Engine, thanks for your good wishes!

    Urdrago, congrats on being done with this chemo. I'm guessing you'll have Xeloda after surgery? It's good that the lymph nodes and tumor haven't changed. Keep us posted.
  • InnaB2018
    InnaB2018 Member Posts: 766

    GAWarrior, yep, getting Benadryl as a pre-med during the infusion. It has to drip for an hour and be diluted with fluids, but I am getting it.

  • Engine104
    Engine104 Member Posts: 241

    Janice met with a different MO today (Her regular MO is on vacation). They said her counts, which are at low normal or just below that is nothing to be concerned about, so that is good news. Because she is ER+, they started her on an estrogen suppressor. We both feel better knowing her slight count drop is expected after her injections and infection and it is nothing to worry about.

  • duffyzmom
    duffyzmom Member Posts: 217

    Engine104 - glad to hear a good report on Janice's blood counts.

  • life1963
    life1963 Member Posts: 364

    Engine I am taking anastrozole. About a month now.

  • Engine104
    Engine104 Member Posts: 241

    Hi Duffyzmom and Life1963,

    Thanks. We were glad to hear the drop wasn't anything to worry about.

    Janice is on Letrozole https://medlineplus.gov/druginfo/meds/a698004.html , 1 pill per day. So far, no side effects. Knock wood.

  • debal
    debal Member Posts: 600

    hi engine! How is Janice feeling? Regardless of which of the 3 AI's she is on exercise is the key to noticing the least side effects as possible. If you look through a few of the other threads it's a recurring theme.

    How is her activity level at this point? She has had a tough road. It will be upward from here. You just keep doing what you are doing by lifting her up. Take care, deb

  • Engine104
    Engine104 Member Posts: 241

    Hi DebAL,

    Thanks for asking. She is slowly getting stronger. She took a short walk this morning with our dog. It tired her out, but then she's been pretty much just on the couch for the last three months or so. I read her your message. She's going to keep walking and building up her energy. I think too she will feel better as her appetite increases. It was pretty minimal for quite a while.

  • debal
    debal Member Posts: 600

    hello again engine. I had a feeling with all Janice has been through that her activity tolerance is low but to be expected. It will get better. Time or keep track of distance on your next dog walk. Then add a minute or 2 or ..add a tiny bit further distance. I would seriously consider logging it for her. I could so see you doing that for her!!! That way you both will see progress. Even try to get her out again later today. You could log total minutes for the day..it doesn't matter how she breaks up the little walks as long as she gets it in. As she takes more pills and doesn't move she will feel stiff in the coming days or weeks. As she starts feeling better the log will help..it keeps us accountable. You will enjoy tracking her walks rather than those dang chemo side effects!! Keep me posted!

  • life1963
    life1963 Member Posts: 364

    DebAl how are you since surgery? That is an awesome idea to journal your workouts and activity. I too am going to take that into consideration and start doing as well cuz you're right it will keep me accountable when I look at it that at the end of the day and see how my joints are feeling and determine if I need to increase or decrease. Also my doctor has approved turmeric for joint inflammation and pain. However I'm not allowed to take it till after my liver enzymes are back to normal. He said I have to wait till October to get my next blood draw. So I can't really tell you if it works or not. LOL

    I feel most of my joint ache in the surgery arm with the 23 lymph nodes that were moved as well as my hand. My other hand aches but not near as bad. I have been doing physical therapy to strengthen my arms and they have Incorporated legs as well. Feels good to get movin again.

    Also does anyone know if it is ok to take ibuprofen every day for joint pain? I've been trying not to do that but some days my hands hurt so bad I have no choice.

  • urdrago71
    urdrago71 Member Posts: 500

    Hello all, I'm doing well. Neuropathy set in a little bit more in finger beds and I've soaked them yesterday and today. Finger beds are Sensitive to pressure but since it was the last chemo not expecting this to last very long. The crust eye thing. I cant explain but all those spot are pealing and healing up.same with one elbow and a few fingers


    Life, great to hear you're doing well. The 1 of 23 lymph nodes means 1 positive. But does it mean they removed 23? If so why did they have to remove 23 to know good or bad lymph nodes.Your liver enzymes are high right? Are u taking pain meds? I know a SE of taxol is evaluated liver enzymes but your at least 4 weeks PFC so did ur doc explain why they were high or offer to do ultrasound on liver to see what's going on? Mine were high for a bit during taxol, and my MO said if it didnt come down in a week that was her next step.

    Engine- I really like the idea of checking on our activity level, as we all recover. I'm walking and will start back at gym tomorrow. Light activity. And group walks at work during lunch. I'm trying to rebuild my endurance and muscle strength before I go into surgery.besides fresh air does a body good. Hoping it heals with Janice recovery smoothly and gradually.

    Great advise Deb, hope ur healing is with minimal pain. Are u able to drive yet? That's the first big step after drains are removed right?

    Deb/Life, did either of u have to wear sleeves after lymphnodes evaluated to reduce edema?

    Frog- how does it feel to be 2 weeks PFC? Have u taken any walks in the snow? The season there should be heading towards spring in a few months, everything blooming again..you should be done with surgery and able to enjoy the nicer weather..woohoo

    Gawarrior, how are you hands holding up? Hopefully over the weekend u will start seeing an improvement. I dont know how u or frog went so long with the discomfort. I know I wld of asked for a reduced if I'd had any more infusions. I know ive stayed active are u still able to keep up with jogging?

    Dont mean to miss anyone, wishing u all a good weekend. Sending good vibes, friendly hugs and warm smiles..


  • life1963
    life1963 Member Posts: 364

    Undrago. You know I have been asking myself that same question. I do remember her telling me when she got in there that my lymph nodes were all swollen so she just kept taking out more and more. However I only ended up with cancer in one of them. Yes I am using a lymphedema sleeve when I workout or do any excessive activities or when I feel my arm just feels tired. My liver enzymes are starting to go down but they are not where he wants them to be. He has not told me what his plan of action is if they are not where he wants them to be come October. However I am only 61/2 weeks out from DD taxol so I think he just feels my body needs more time to heal.

    I do take Ibuprofen when the joints in my fingers and hands get to hurting too bad. I've also been just using topical creams. I am not a huge pill person so it has been a struggle for me to even admit that I need something for the pain or stiffness. I just asked on the board Doing well with Anastrozole" The question to anyone else out there on what they were doing for there joint pain in their hands and wrists. Hopefully someone's has better ideas that are working for them.

    Getting ready to go on vacation for a camping trip for a solid week we decided to wait until Sunday to go though. We were trying to get everything done Plus work my daytime job and my night time job and I was becoming exhausted. I finally talked him into waiting until Sunday so we could have Saturday to get everything together. It's nicer this way. I take my time and not feel like I'm going to forget something. But I'm sure I probably will anyways. LOL

    Well I better get with it or else I wont be ready till Monday. 😉

  • Frog-on-the-lilypad
    Frog-on-the-lilypad Member Posts: 159

    DebAl, that is some really good advice. I will dothat. I want to be in a better shape before surgery, also I need to do stuff to keep myself busy and not freak out about the surgery. I am more scared of the GA part than the actual surgery.

    Engine I hope Janice is feeling better and better as days go by and her counts go up steadily.

    Life, I am so excited for you. Hope you have an amazing trip. You deserve it.

    GAWarrior, I hope you are able to give your fingers some rest over the weekend. Hang in there.

    Urdrago, how are you feeling? I wish I could say that things have vastly impoved, it has not☹️. I still have random aches and pains, but it is getting better. I have lost all sense of smell, I have realized. It was very heightened on AC. My fingers feel a little better today, as in no tingling just the numbness, so yeyyyy.

    No hair or eyebrows, I look like Voldemort. Lol, I have been watching Harry Potter movies.

    Also, my sleep is suffering as the surgery date approaches. I met my BS on friday and had hardly any memory of that appointment, just bits and pieces. Thankfully it was a rehash of previous appointments so hopefully I have not missed much. I have to go a day ahead to get some radio active thing injected into the nipple, that will make it easier to point the sentinel nodes.

    I feel so ashamed of whining all the time. I feel like I am 80 plus. I am sure they whine less than me.

    Urdrago, it doesnot snow in Auckland, itjust gets cold and wet and windy. Days have started getting longer. I hope my head starts sprouting, keeping in step with spring.

    Ingerp, how are you doing? InnaB, hope you are feeling better. Same for Djt, Duffyzmom, Maggie, FDwithfurkids and anyone else I am missing

    Wishing everyone a good weekend.

  • Engine104
    Engine104 Member Posts: 241

    Thanks everyone.

    Janice also has neuropathy in her toes and fingers. She feels like she's lost some dexterity.

    They also removed 23 lymph nodes when my wife had her lumpectomy 22 years ago. Unfortunately, that means that this time they could not find any lymph nodes to test. So, not being able to determine that, they had to do TC chemo just in case. Looking back at all she went through this summer, I really wish they would have found one to test.


  • urdrago71
    urdrago71 Member Posts: 500

    Engine, I'm hoping it comes back. I feel super sensitive and it's hard to grab something or open it. Maybe someone that's been 6plus weeks PFC can answer is the feeling comes back..

    Thank you for the information never thought about that if I'd have a reoccurance. Maybe transplate lymphnodes should be something to talk about with surgeon since I'm having a lumpectomy and unknowing how many lymp nodes they will take.

    Thank goodness I have a follow up apt. With medical team so I can try to understand lymphnodes surgery better.

  • InnaB2018
    InnaB2018 Member Posts: 766

    Glad to hear everybody is improving. I had a very good day today as well. Went for a hike with my long suffering husband, did some light shopping in Whole Foods and went out in the evening. Then we went to sauna to detox (we have one in the basement). My calfs hurt a bit today, no idea why, but not too much. Was bitten twice by some dastardly insect regardless of citronella bracelets. Maybe it wasn't a mosquito.

    I had 18 nodes removed because the sentinel node had cancer in it. All of them, except the first one were clear. When I asked my surgeon why she removed so many, she said the usual protocol when the biopsy comes back positive is to remove a particular underarm area and different people have different number of nodes there. All my second opinion doctors said that it's good that so many nodes were tested, because if too few are removed there is no way of knowing that the remaining ones are clear. I am going to think about it as a silver lining. My arm is stiff if I don't do exercises 3 times a day, otherwise there is no problem with it.

    Wishing everyone a good Sunday.

  • Engine104
    Engine104 Member Posts: 241

    Hi InnaB2018,

    That's my understanding as well about lymph node dissections today. If the sentinel is involved, they need to test more. Back when my my wife had it done 22 years ago, they pulled that many routinely.

    My wife has been blessed not to have any lymph edema all these years. The main problem is not being able to have blood drawn from that arm. The veins in her other arm are pretty much shot.

    URdrago71, My wife asked the MO yesterday about that and she said the neuropathy should ease up with time.

  • life1963
    life1963 Member Posts: 364

    Undrago 6 weeks out. Hands are getting better. Annastrozole I believe it is what causes the pain and weakness now.

    InnaB/Engine Thank you. Now I understand why so many were takin out. I have a feeling of numbness, burning and tiredness if I do to much. I wear my sleave when need be.

    InnaB sounds like a wonderful day.

    Frog, GaWarrier hope you get to feeling better very soon!

    Everyone have a wonderful weekend!


  • ingerp
    ingerp Member Posts: 1,515

    Frog—thanks for asking. I’m a week into rads and doing well other than getting pretty tired of being bald. I started to see some hair coming back last week so now I’m obsessively checking it several times a day. Funny—I was patient until I saw some starting to grow and now I am *so* anxious to ditch the ball caps. Realistically I think I’ll be doing well if I have maybe an inch of hair in two months. It doesn’t help that it’s very light, so you can still see my scalp. I think I’ll be as excited to leave the house without a hat as I was to finish chemo. :-)

    InnaB—I think I’ve had a spider bite or two. I know August is their big month around here.

    Hope everyone here is slowly starting to feel more normal. I have rads into the first week of October and can’t even begin to think about the AI that will follow. Aiyiyi!!

  • debal
    debal Member Posts: 600

    Good morning! Hi LIFE, doing well. I'm 2 weeks post exchange with another 2 weeks of lifting restrictions. Cleared to start stretching which is good. Thanks for asking. If you are going to PT maybe they can give you hand exercises to help. Ibuprofen daily to get through is fine but not forever as it is not the best for our livers. Arimidex can be tough and you aren't alone with the joint pain. I take a plain claritin since I took it to prevent neulasta pain with chemo. Keep checking the other boards for ideas. Have fun camping!

    Inna B, I am under the same understanding as you about the lymph nodes .We have 3 "levels"of lymph nodes. Each person has a different number in each level. Some surgeons will take a whole level or further if needed depending on each unique situation. So that is why we may see 2/23 etc. Someone else may have 2/15. I guess you just cant tell from that if it's all one level or into the second unless you ask since we all have different numbers in each level.

    Frog, when is your surgery date? I'm sorry you aren't sleeping and you are not complaining! My family called me Voldemort too. Especially when I do the "hand"thing. Now I am even passed the "stranger things"stage if you saw that. Lol. I looked like Eleven! If not , Google it lol You will get there.

    Urdrago, yes I'm driving. No drains with exchange surgery. I had 4 drains longer than I wanted with mastectomy. I had a few PT visits. I made sure I saw a PT that was qualified to do lymphadema screening too and I did get a sleeve. I don't wear it often but will wear it when I fly. I hope neuropathy and eye crust thing is improving.

    Ingerp. I understand the waiting for the hair. You will get there. Are u taking biotin or a nail vitamin? I'm very close to where people think I chose a pixie cut..not!

    Duffy, djt. Hope you are doing well. GAW, I hope you got some rest this weekend.

    I know a few of you are close or just started the AI's. You can pretty much bet on joint pain will happen to some degree. I cant stress how much moving will help and will give you the best chance of success. If you are moving faithfully and still having issues you can always switch to another. Unless you are dedicated..some of us are and some not..log your exercise for the day. Think ahead..and plan your walks/gym/runs whatever around your schedule. Logging will keep you accountable and with time you will want to fit it in. And to be honest we truly NEED to.

    Take care everyone and enjoy your Sunday!

  • ingerp
    ingerp Member Posts: 1,515

    DebAL—I am taking Biotin. I have hairs sprinkled around my head that are much longer than the rest—maybe an inch. Someone posted quite a while ago that she felt like her hair had grown out enough to dump the caps when it could be parted and lie flat. Mine is definitely sticking straight up. This is a weird, funny journey. . .

  • gawarrior
    gawarrior Member Posts: 368

    Hey All, checking in. My fingers/feet are much better this weekend. I hadn't been hitting the l-glutamine as often, so I'm back to taking that full strength and is helping. I'm hoping the feet were just a one time thing. Hubby and I walked for an hour both yesterday and today and my feet were fine. Urdrago, I have just been walking 3 to 4 days a week this week, because I think the impact of running may be partly why my feet were sore last week. The fingers that are my worst are the ones I put pressure on at work, so it makes sense that running might have aggravated the bottoms of my feet. I can't find anything online about whether it's fine to stop chemo early (just people saying they did it, but how do you know if they had a recurrence?). Anyhow, I will definitely be doing the final two chemos - this week and next week- just too much at risk with being triple negative.

    Engine, glad Janice is doing well.

    Life, enjoy that trip! We're doing a long weekend next weekend for Labor Day and I can hardly contain my joy at getting away and having something else to think about other than cancer.

    Frog, so sorry you aren't sleeping well. I'm sure the impending surgery is weighing on you. I will be in your shoes soon and know it will be the same for me. Don't EVER feel like you're whining - that's what we're here for! We all need to vent - this diagnosis is all-consuming and preys on our minds. I feel like all I do is think about it incessantly and research incessantly and talk about it to my poor DH incessantly (and you all). Vent away, we'll listen! Oh, I'm in the No-Eyebrow Club along with you. Strangely, I had very sparse eyelashes before all this and they are still hanging in there. My fuzzies have quit, too. Go figure. Wishing you longer, warmer, SE-free days.

    Urdrago, sorry your fingers are sore, hoping it resolves quickly. Enjoy your first no-chemo week this upcoming week!

    InnaB, sounds like a great day (mosquito bite excepted). A sauna in the basement would be heavenly.

    IngerP, one week of rads down! Hoping your fuzzies start to sprout more. Mine are light in color, too, so I can't see them except against something dark. It'll be months before I can part my hair, lol. I agree about how exciting it will be the day I can ditch the wig. Maybe we should ring a bell for that, too.

    Hoping you all are having a great weekend. Hugs!

  • debal
    debal Member Posts: 600

    hi ingerp, I get the sprinkling of longer hairs!. I had the same and i will attach a pic. I was exactly 7 weeks out from last chemo and you can see the long hairs when you zoom in. I'm coming in dark with more gray than before and you are a blondie so it may seem to take longer to cover the scalp. I used nioxin shampoo throughout chemo and still do. Just be sure you are using one that keeps the scalp clean so the hair can come through.

    Everyone is different as to when the right time is to lose the headwear. I probably felt comfortable sooner than most. I worked with a girl years ago that had her chemo curls poking out of her wig. She could barely get it to fit over her head. She finally ditched it soon after.

    I would look constantly too just like you are! Now I'm actually washing hair. It's coming in pretty thick but too short for chemo curls just yet.

    GAW. Glad you are feeling better and going thru with the next 2 treatments!

    image

  • ingerp
    ingerp Member Posts: 1,515

    Oh Deb you look wonderful! If I had that much coverage I’d buzz the long hairs and ditch my baseball cap. I’m happy to go with a GI Jane but there’s still too much of my scalp showing. Still—seven weeks gives me hope. I’m only at 3.5. I decided to take a picture at all of my Herceptin infusions—I have one this Friday but maybe I’ll see significant progress by the one after that, which will be seven weeks PFC.

  • gawarrior
    gawarrior Member Posts: 368

    You look great, Deb! Wish my hair looked anything like yours. I guess I have at least 9 or 10 weeks to go, lol.

  • Engine104
    Engine104 Member Posts: 241

    Deb, That looks great. I can't wait for Janice's to start coming back again.

    GAWarrior, Best wishes for an easy time with the two last chemos. I think that is a good choice.

  • Frog-on-the-lilypad
    Frog-on-the-lilypad Member Posts: 159

    DebAl, you look beautiful. Post a recent pic also. I am with Ingerp, if I have that kind of coverage I will ditch the wig. I did google Eleven from Strange Things. Urdrago has given us unrealistic goals 🤣. Urdrago keep doing what you are doing. Your pic gave me hope. Hope SEs are waning every passing day.

    We are planning a short getaway this week. Nothing finalised yet. Wherever I go will be colder. I will send pics.

    I had been walking 4 days a week around 4 to 5 kms. Yesterday, I walked at a reserve. That greenery and fresh air made me feel a lot better.

    I go to see my MO today, post chemo check up. Surgery is on the 6th, have had the pre surgery talk with BS. I am glad about this trip. I have something else to think of than thinking about the surgery.

  • maggie2
    maggie2 Member Posts: 240

    Thank you Frog and the rest of you for continuing to wish me well. I’m 10 days post exchange surgery. I developed an allergic reaction to the surgical glue only on one side. That’s under control and the bruising is dimishing too. PS said it will be another 4-6 weeks for all the swelling to go away

    DebAL, you look great! It looks as if you kept your eyelashes. My last eyelash fell out the other day, but I do have new growth, same with eyebrows. I’ve been taking Biotin, but haven’t tried nioxicin shampoo. I used Penguin cold caps during chemo. Unfortunately, I didn’t experience the same success that many on the cold capping thread have. All the new growth is gray and the remaining old hair is very thin, scraggly brown. I either wear a baseball cap or have tried the wig a few times.

    I’m glad to read that so many of you have finished chemo and I wish the rest of you a very easy time for your last remaining treatments. This April chemo group has been such a godsend.

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