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Starting Chemo December 2019

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  • maryjv
    maryjv Member Posts: 269
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    Thank you guys! And how exciting Eigna!!! I am def counting down these treatments!!

  • Sunrisefish
    Sunrisefish Member Posts: 35
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    Maryjv yes I had really bad dry eye before chemo - so knew dry eye would be an issue during chemo. The best thing ever for dry eye is the Bruder eye mask.... this really, really helps!

    https://www.amazon.com/Bruder-Activated-Dysfunctio...=sr_1_4?crid=1PEBS0LL8JMEX&keywords=bruder+eye+mask&qid=1581976622&sprefix=bruder%2Caps%2C220&sr=8-4

    Also be sure to try a preservative free eye drop - trust me - do not use one with preservatives as a reaction to the preservatives can feel just as bad as dry eye or worse. I like MGD Retaine

    https://www.amazon.com/Ocusoft-Ophthalmic-Emulsion...=sr_1_6?keywords=dry+eye+drops&qid=1581976814&sr=8-6

    Hope all you ladies are doing well! I am day 3 out from treatment 3. Only one to go!



  • Sunrisefish
    Sunrisefish Member Posts: 35
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    Oh one more thing with the Bruder eye mask - they are finding that dry eye is mostly being caused by blocked oil glands in your lash line...(not actually an absence of tears).... just heat the mask up for 30 seconds in the microwave - put on your eyes for about 10 - 15 minutes - then gently massage the lids to get the oils moving. It's a lifesaver - in 20 years of dry eye - this is the best thing I have found for relief. I'm doing it daily and my eyes are hanging in there. :)

  • maryjv
    maryjv Member Posts: 269
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    thank you sunrise fish!!

  • halezma
    halezma Member Posts: 13
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    Hey guys! Sorry for being MIA it has been a crazy couple of weeks. Sorry for the long post but here is my update...

    I finished my AC treatment on 2/3--Yay! Well that same day I saw my plastic surgeon and I had developed a small seroma on top on my left (non-cancer side) tissue expander. Unfortunately where the seroma developed was an area of extremely thin skin. The PS did an aspiration to make sure it wasn't infected (it wasn't) but the next day the spot of the aspiration had pretty much ripped a hole in the thin skin. So another trip to the plastic surgeon and he decided that I need surgery ASAP so I had surgery on the 7th. He decided to remove the tissue expander and delay reconstruction on that side until May. While all of that was going on I had to have a chest xray because I started to have pain in my left rib and had difficulty catching my breath and was really fatigued with any type of walking or even the stairs at home. The chest xray showed hyperaeration of my lungs, a small collapse of the aveoli and a small pleural effusion. All of my doctors are contributing it to too many surgeries close together (5 since September) and the anesthesia has impacted my lungs.

    So while I met a milestone of completing AC I was in my feelings about having another surgery and the removal of the tissue expander. I was down in the dumps for a few days and had a mini-crying fest. But onward and upward...Taxol starts Monday.


    Thanks for listening!

  • maryjv
    maryjv Member Posts: 269
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    oh Halezma! What a full few weeks! Glad you AC is over-looks like we are on the same schedule as I am set to have taxol on Monday as well! I will have a new port placed on Friday...feeling very fatigued from anemia but onwards and upwards-like you said!!

  • Eigna
    Eigna Member Posts: 256
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    Maryjv - congratulations on finishing your AC treatment!!!!! Woo hoo! We need to celebrate! 🎉

    I finished today my last TC chemo ! 😊

    Halezma-I'm sorry for all the trouble you are having with your surgeries. I hope that everything will turn out ok at the end.

    To all:It's ok to be down sometimes but the important part is toget up and fight. You got this. One step at a time! You can do it! 😘.

  • maryjv
    maryjv Member Posts: 269
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    Amazing Eigna!!! You made it through TC!!!! Thank you for your words of encouragement I know I need them sometimes but feeling better today than yesterday and that keeps me going!!🙏

  • havefaithtoday
    havefaithtoday Member Posts: 88
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    Congratulations Eigna and finishing your TC!!! Woohoo. How did that feel? You are just one week ahead of me. I'm supposed to have my last TC next Tues, however I've developed a rash and have hives, so they referred me to an Allergist whom I'll see tomorrow. They'll determine if it's an allergic reaction to the Taxotere and whether it's safe for me to continue or not. This all through me for a loop today and now my mind is thinking all sorts of things.

    Mary, Congratulations again on finishing your AC.

    Halezma, sorry to hear about everything you had to go through with all those surgeries. Congratulations though on finishing your AC.

    We are all making progress...sometimes it's a few steps forward and one back, but we are heading in the right direction. I couldn't have done it without all the support from you all.

  • Eigna
    Eigna Member Posts: 256
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    Havingfaithtoday- it feels great to finish. I hope it did it’s job. 😊 Let me know how it goes with th allergist. Maybe you won’t do the last treatment because of your rash!

  • jrnj
    jrnj Member Posts: 407
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    Mary and Eigna, Congratulations!!

    Havefaith, hope everything clears up and you can have final round. I saw your post on hair loss. It is traumatizing for me too. I lost about 80% and have two more treatments. It was long and wavy like yours, but not as nice. You look much younger than your age!

    Halezma, I also lost my tissue expanders to psuedonomas infection. I also have ILC, it's in my nodes and my surgery was 9/24. To be honest, losing them was not as traumatic to me as the stress at the time of not knowing if I was doing chemo and having positive nodes and going for a second and third opinion, and hating my breast surgeon. My plastic surgeon has his own surgery center. I was lucky, I had two quick procedures under a local, and didn't need the anesthesia, one to irrigate and clean, and the other to remove them. Didn't hurt at all and I was talking to him through the removal. But I was in the hospital for 4 days on IV antibiotics trying to save them and that was horrible and it didn't work, and skin started to die. I look horrible, but my foam breasts are light and comfortable. I think it was a blessing in disguise. I don't want to delay radiation to put in tissue expanders again, it may go bad again, so I'm going to wait til the fall and do DIEP, and I have six months to gain weight and try to avoid implants. Are you having radiation? What was your Oncotype? ILC is often low. I'm surprised your are getting AC with ILC. It is usually a low Oncotype. I was in gray area. One Dr. said no chemo and one said yes.

    Bejeweled, thanks for the support! I get so frustrated at bad information and rude medical staff. I know where Marlton is. I am an environmental engineer. I used to do soil and ground water cleanup at gas stations, and I had Exxon Marlton and Exxon Cherry Hill. It's about an hour and a half from me.

    So I called my insurance and they said no problem, try the Nuepogen and you don't have to cancel the Onpro approval. I thought this was good news. I called the MO office and they were so rude to me. They said you can't believe them, they won't pay and you need to cancel the onpro first. I also mentioned I was on statins, my liver enzymes are slightly elevated and realized maybe I should lay off the statins. The nurse Dr. (some new degree) said not my issue, call your primary and I have patients to see. Then I got transferred to a nice nurse who said it might be a good idea to stop taking them for a few weeks if ok with your primary, the right thing to say! but why didn't they think of it instead of me!! They told me to stop drinking and taking Tylenol, duhhhh I'm on statins that can affect liver. I don't want my chemo delayed because they are not prepared with insurance. However, the good news is I didn't take the Nuelasta last week and my blood test yesterday was ok, just above low normal range. Just because all my numbers are OK, is no excuse for bad care. They keep saying your fine. Doing fine and feeling fine are two different things. Sure, overmedicate me and make me sick because you are too lazy to deal with insurance. My own fault I suppose, I was aware the Dr paid the FDA for Medicaid fraud, 2 million, for buying non-FDA approved chemo drugs from mexico, but everyone loves the Dr., and he is head of oncology at a major hospital and didn't lose his license so I figured I'll give him a try.


  • maryjv
    maryjv Member Posts: 269
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    funny story I thought I would share: yesterday I was craving Chinese so had my hubby grab me something and when we are eating dinner I say, “well I guess my eyes are bigger than my stomach” because I ate so little and of course my ever brutally honest 7 yr old says, “yeah well that’s not true, your eyes are definitely not bigger than your stomach”. Oh she makes me laugh everyday!!!!!
  • Bejeweled
    Bejeweled Member Posts: 22
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    JRNJ - I am appalled by the provider's lack of coordination with the insurance, and their general apathy. How much more do you have to go? I can't remember how many rounds you have. I truly hope you are almost done. Thinking of you in the meantime!!


    Mary and Eigna - congrats on those milestones!

    Hazelma - So sorry about these surgeries and complications - what a trial for you! I am glad you are ok, but sheesh what a journey.

    Havefaithtoday - hope the rash is a simple thing and you can just keep going and get this done!


    As for me... I am doing generally better on Taxol and Herceptin than I was on AC. I still have fatigue and some other side effects, including awful taste in my mouth, but I am not debilitated by nausea the way I was with AC. I finished my 7th total infusion, 3rd of the Taxol and Herceptin. I have 9 left to go before graduating to Herceptin only. Plugging along!


  • jrnj
    jrnj Member Posts: 407
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    Bejeweled, thanks for your concern.

    So update. I skipped Neulasta 2 weeks ago. Felt better first week. It was really knocking me out on day 3 and 4. They tested my blood last week, I was a tiny bit low, they gave me a shot of zaraxio, similar to nuepogen. Anyone heard of it? I also informed my nurse I stopped statins for a few weeks, my primary oked it. I also said I am waking up with numb hands, mostly right, so it may be lymphedema. She says oh no, it's probably a herniated disk. Same thing my inexperienced PA said before bmx!!!, I had chronic arm pain that went away after the cancer was removed, it is cancer or chemo related!!!!! Then she says Dr. will probably send you to nuerologist. I'm thinking, how will he send me if I'm not seeing him today? It's not that bad, I was kind of testing her and she failed. I don't want to see a neurologist with one more chemo session left. I am doctoring myself. So although my nurse and Drs. assistant are very rude and inattentive, the head nurse assured me I am well taken care of and if I need the shot, I will get the shot and chemo will not be delayed. Had chemo today and feeling the usual tired, headache, but overall all is well and my last session is in 2 weeks, yah!!! Better not to rock the boat. Telling the Dr. his staff is rude and making mistakes will get me nowhere.

  • maryjv
    maryjv Member Posts: 269
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    JRNJ-I have the same problem since diagnosis! My cancer hand falls asleep and I feel some tightness at times, I have had no surgery other than lymph node and tumor biposies....hoping it is cancer related and goes away when treatment ends!!! So glad you have your last treatment coming up!!!!! I had my first taxol today (the new port was used) but the nurse applied a bandaid and of course when I went to remove it to shower it peeled off half my glue!!! Doctor says let’s just observe for now and will have my nursing team clean and dress when I go to work tomorrow!!!
  • jrnj
    jrnj Member Posts: 407
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    Hi Mary, I had a lot of arm pain and throbbing before surgery, and it did go away. Hope the same for you. Cancer can be pressing on a nerve. So far its not as bad, but hoping it doesn't get worse. I know I complain a lot, but I am grateful for the positives and my heart goes out to you all that have severe side effects. I hope Taxol treats you better than AC. How many Taxols are you doing? I hope your port is ok. I had a bandaid peel off my skin after a biopsy and I freaked thinking it meant I had skin cancer. But the Drs. said no, it happens all the time, lol. They are so cold, but I guess they have to be to deal with what they see.

  • maryjv
    maryjv Member Posts: 269
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    I have 12 total taxol...counting down!!! these are weekly so hoping since it’s. A smaller dose the side effects will not be as bad🙏 I am thinking the arm pain I feel Is from the port infections and surgeries

  • jrnj
    jrnj Member Posts: 407
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    yes if it’s the same side definitely could be. Port could also be pressing on a nerve or blocking blood flow. They punctured my friends lung on port install.

  • gearup52
    gearup52 Member Posts: 12
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    Hey guys, I am struggling with DD taxol! I am week two today after my second round. I am only just starting to feel better. On day #3 I start to have severe nerve/bone/muscle and generalized pain. Nothing helps (narcotics, tylenol, motrin or THC). Very mild neuropathy thanks to icing my hands and feet during infusion. I am trying to make it through but am afraid it will just get worse on #3 & 4. It also make me wonder what long term damage is being done. Sorry to be a debbie downer, I really am trying to keep it together...ugh.

  • maryjv
    maryjv Member Posts: 269
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    No need to appolgize Gearup we are all having our challenges together of course!!! I have weekly taxol x12 and one down so far but def concerned for all these new side effects that may come praying for you all🙏

  • jrnj
    jrnj Member Posts: 407
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    gearup, it's ok to vent. Thats why we are hear. To listen. I constantly worry and need to vent. My day 3-5 crash was due mostly to the neulasta shot. That shot is pretty nasty. After suffering 6 treatments I finally went off it and they are giving me shots of Zaraxio. Talk to your dr about alternatives. I'm in day 3 now and mostly just really tired but better wo Nuelasta.

  • Marmotka
    Marmotka Member Posts: 19
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    Gearup - Perhaps you can ask your oncologist to switch to weekly taxol for the remainder of your dose? When I was given the choice between DD and weekly, I was told I could switch at any time if I chose to start with DD. For you, it would mean 6 more weeks of small doses. I find the side effects of the weekly to be almost non existent aside from fatigue.

  • havefaithtoday
    havefaithtoday Member Posts: 88
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    Good Morning beautiful ladies. How is everyone doing?

    I'm just coming back up for air after finishing my last chemo this last Tues. I dealt with lots of side effects along the way and had to see several other specialists (Pulmonologist Gastroenterologist, Allergist and Cardiologist) to get through some things. Everything seems to be under control at the moment. I'll be even more relieved when I'm passed the 14 day mark and hopefully no longer Neutropenic.

    My thoughts and feelings are all over the place at this point, relief, excitement, fear, etc. I'm sure this is normal. Anyone else feel all over the place? I look in the mirror and I struggle when I see my head without hair. I know it will grow back, but gosh, it's the salt in the wound, isn't it.

    I start radiation in about a month, then on to Tamoxifen.

    Where's everyone else at in their journey at this point?

    Sending positive healing light and love to all you brave warriors;)

  • maryjv
    maryjv Member Posts: 269
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    Have faith-how wonderful! I have completed 1 of 12 weekly taxol...going back every Monday! First week has not been so bad, hoping side effects are minimal! I meet my surgeon 4/2 to discuss mastectomy and continued treatment plan

  • kat333
    kat333 Member Posts: 38
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    havefaithtoday I, too, completed final chemo last week. It surely does leave one with a mixed bag of emotions. At front line is feeling so grateful for family, friends, health care workers and all of you here for their caring, sharing, love, and support.


  • jrnj
    jrnj Member Posts: 407
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    havefaithtoday and kat333, Congrats on your last! Mine will be 3/9, than radiation, than ovaries out than about 6 months after that DIEP surgery. Radiation Oncologist won't see me til 3/18. I hope I start right away after that. So sorry you had such a hard time. I'll be very happy to be done with chemo. Can't wait for my taste buds to be normal and my hair to start growing in. I have about 10% of my hair. I spray it with root touchup and I just bought a ponytail on amazon for $11. Its more comfortable than my $300 wig I'll probably never wear. What little I have left sticks straight up like Heatmeiser in the morning when I wake up without gel, lol. I hate waiting 6 months for surgery, I just want to get it all done with, but I know it is for the best. I'm used to my foam filled sports bras.

  • havefaithtoday
    havefaithtoday Member Posts: 88
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    Thanks Ladies for the support. Hard to believe it's March and most of us started chemo in December. Here's to the start of a new month. This sure has been an emotional ride. We'll all get there one day!

    JRNJ, what kind if ponytail did you buy on Amazon? I've been searching for some. I did see a ponytail headband on Headcovers.com that I was thinking of ordering.

  • jrnj
    jrnj Member Posts: 407
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    Havefaith, here's the ponytail story, lol. First I bought: Sofeiyan 13" Ponytail Extension Long Curly Ponytail Clip in Claw Hair Extension Natural Looking Synthetic Hairpiece for Women (Golden Brown) which is really cute, but has a huge claw and is too heavy and annoying for fragile hair. Than I bought Miss U Hair 20" 140g Women Long Curly Synthetic Hair Extension Clip in Ponytail Layered Hair Piece P12 (A13 6/27) because it has a light comb, but it is really long and curly, like the hat piece you bought. It was actually cute, but looked more fake and was a little heavy with all the hair. I cut the hair myself and flatironed the curls out on low heat and it looks great and is comfortable. I attached the comb to the tiny little pony tail I have left and it held. My friends thought it was my hair. I'm not a hair stylist by any means, but I've been cutting my own crazy thick wavy hair since I was 15, not usually that successful, lol. So worth $11.

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  • kat333
    kat333 Member Posts: 38
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    JRNJ ... You're beautiful and did a great job working around the hair issue. I'm right on board with you. Hair loss and not being able to taste anything have been the two most difficult side effects. My bilateral mastectomy was done before chemo. Thankfully was released the same day, had no issues, short of the irritating drain tubes which came out a few weeks after.

  • kat333
    kat333 Member Posts: 38
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    ps: I would feel more comfortable if both ovaries were removed. Left was some years back. In spite of seeing several doctors due to constant, severe, pain in left abdomen nothing was done. They said 'cyst'... no big deal. Some months later it ruptured, ended up in the hospital with peritonitis. Though he cut across my stomach from appendix (he didn't believe me when I told him it was due to left ovary) didn't bother to take right ovary. Then acted if I was 'off the wall' being upset he didn't remove ovary on right. Thankfully I'm much more confident in my team of doctors now.