Anyone.Starting Chemo in October 2016?

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  • Luwusu
    Luwusu Member Posts: 88
    edited January 2017

    good to hear from you, Barb. Yes, family situations always seem to surface at the holidays. You are not alone in that. I hope your Taxol goes well today.

    Lynn, yes, I'm having #12 Taxol tomorrow. Even with my side effects I am very glad that I stuck through it. I just really hope that A/C goes easy on me when I begin it at the end of this month.

    I am thankful for my kind, competent chemo nurse, Lin, who always has a smile, always has a suggestion, always is positive. When I first began chemo, I thought about asking for a different chemo nurse because I had difficulty understanding Lin. I am so glad that I didn't. We understand each other just fine.

    Nanci

  • VLH
    VLH Member Posts: 1,258
    edited January 2017

    ARRRGH! Blasted port won't produce any blood despite the anti-coughing drug. My CT scan several weeks ago showed the port had retracted 3 cm, but they've been able to use it with the anti-clotting tweak. The surgeon would want to do a specialized study plus a corrective surgery should mean having to meet my $5,000 again right away since it's a new insurance year so this is a major pain in the rump.

    Boo! Hiss!

    Lyn



  • Julesbabe55
    Julesbabe55 Member Posts: 39
    edited January 2017

    Barb - good to hear from you! Hope your Taxol went well. I had #2 today - my onc keeps telling me SE are different from A/C - hardly any nausea and feelings of neuropathy probably not towards the end. Going to hold her to that. Challenge is that there will be a cumulative effect on my hemoglobin counts so my onc is recommending a blood transfusion - she left the decision up to me today. I put it off until next week - don't think she was happy but my level is just under 8 and with this thalicemai thing, my body is used to operating at the low end of the scale so I think I can go another week. Then it's probably another all day at the hospital for the transfusion - joy of joys.

    Nancie - good luck on the last Taxol tomorrow. Sounds like you have some great trips to look forward to before A/C - how exciting!  At Christmas dinner, we started to play our annual family vacation - 18 of us traveling together. The farthest we got was agreeing where & when to go which is a challenge when trying to coordinate calendars. This year - Aruba. Can't wait. In the meantime, I'm thinking of planning a long weekend in Maine for the hubby & I after Taxol is done so something else to look forward to.

    For those of us that are working, have you considered using FMLA time for the days you take off for treatment or other things? How does it work for you? As I read the policy for my job, it looks like I have to use all my other allotted time before I can use FMLA which seems confusing - thought I could use FMLA instead of other time. Might have to call HR which is never fun.

    Julianne

  • Julesbabe55
    Julesbabe55 Member Posts: 39
    edited January 2017

    Lynn - sorry to hear that you're having such a time with your port. Any update?

    Julianne

  • VLH
    VLH Member Posts: 1,258
    edited January 2017

    Howdy, Julianne! When the chemo nurse had the oncologist come over to see how the port wouldn't work, the darned thing immediately produced blood! The port worked when the chemo nurse was demonstrating how to work with my wonky Port configuration to a less experienced nurse, then worked again when she was showing the port's performance to the oncologist. That makes me wonder if she's standing / holding the syringe at a different angle when she's interacting with the other people & that might have an influence on the port producing blood. Remember it has a weird loop in it and had migrated 3 centimeters from the original implantation location. May be a long shot, but I'm going to ask her to try different angles next week before we assume that the port is not usable. Wish me luck!

    I hope you can use the FMLA. I lost my career at age 42 to the blasted Fibromyalgia and had to quit my part time jobs due to the cancer so haven't explored FMLA. Good luck!

    Lyn

  • Luwusu
    Luwusu Member Posts: 88
    edited January 2017

    I finished my 12th Taxol today!!!! I have 3 weeks off before beginning A/C. I am hoping that my side effects fade enough and soon enough so that I will not have red, scary looking skin on our cruise, and that I will be able to taste the food.

    Lyn, yes, definitely ask them to try your port from every possible angle. Maybe you figured out the solution. I really hope so.

    Julianne, sorry to hear you need to have a blood transfusion and a day at the hospital. There's always something. I like your idea for a long weekend in Maine. We love Maine.

    I hope everyone is doing reasonably well and that your spirits are up.

    Nanci

  • Abracadabra
    Abracadabra Member Posts: 1,369
    edited January 2017

    Hello all,

    I had my first Taxol on Tuesday and it was absolutely fine ... I was drowsy from the Benadryl, but nothing more than that.

    My big struggle has been the loss of my beloved dog Max ... we had him put down on Tuesday night. We were fortunate that he was able to make it through the holiday season, but he was having a hard time and it was the right thing to do. I can't believe how difficult I'm finding this ... I miss him so much! We had him for 10 years, and he was so much a part of my daily routine that I feel his absence at each stage of my day, from morning to night. I guess it will get easier with time. I hope so!

    Best wishes,

    Barb

  • deemendoza
    deemendoza Member Posts: 84
    edited January 2017

    Hip Hip Horray to you Nanci. I will pray that you storm through A/C just like you did with Taxol.

    Oh Barb, I'm so so sorry. I can't even begin to imagine how you are feeling xoxoxo

    As for me I'm nearing around 7 of 8 (3rd of taxol) and although other than the muscles, joint and bone pain for about 4 days PC I've been ok... I had a faint spell on Saturday but wasn't out for more than a few seconds (per my fiancé). Since I started chemo my only biggest complain has been headaches which have gotten worst with taxol some of you were/have been kind enough to offer suggestions. I spoke with my ONC last week and she suggested we run an MRI of the brain just to rule out anything. I had my MRI done on Tuesday and my ONC called me yesterday they found a cyst about 2in in the lower right side and she said it's nothing to worry about (yeah right) but because I slightly fainted and my headaches she wants me to see a specialist. Ughhhhh does this road get any better? I feel like I'm reaching the end of my rope. Having my only sister pack up and go and leave me alone to deal with my illness and my elderly parents, dealing with my parents broken hearts, my currently treatment and now this is just too much. sorry to be a daisy downer but I feel I can't really express how I feel with family and friends to not bore them or bother them with my issues.

  • VLH
    VLH Member Posts: 1,258
    edited January 2017

    Oh, Barb, my heart goes out to you. A photo of my then 15 1/2 year old Shepherd boy showed up in my Facebook memories today. He was such a delightful companion. I hate that you're losing Max at a time when life is handing you other daunting challenges, but I consider it a gift that we can help our pets pass so they needn't suffer.

    Nanci, YAY FOR YOU on reaching this milestone! I hope the skin heals quickly so you feel comfortable during the cruise. Fingers crossed for minimal side effects from the AC.

    Oh, Dee, no! How very scary to have the headaches and fainting incident. Being abandoned at this difficult time must be overwhelming. I'm so sorry that you're going through this. Feel free to vent away.

    Other than some numbness in my right hand, a little bone pain and the usual fatigue, I'm doing fine today. I'm a little concerned that my right armpit still feels tender after the oncologist examined the area Tuesday. She didn't find anything, but I'm paranoid about cancer cooties setting up shop somewhere.

    Lyn

  • Luwusu
    Luwusu Member Posts: 88
    edited January 2017

    so very sorry, Barb. That sucks. I know. Try to think of the good life Max had with you. We love our pets so much because they are true family members.

    Dee, geeze Louise. Sometimes there seems like there's no end to the stuff that happens. I am sorry that you have so much on your plate right now.

    Lyn, I know just what you mean about cancer cooties. I feel the same way after I've been "manipulated" by one of the doctors. And they can never, ever feel anything.

    I am thankful for the women on this site who share their ups and downs. Makes me feel a little normal, a little less alone.

    Nanci

  • Julesbabe55
    Julesbabe55 Member Posts: 39
    edited January 2017

    Barb - I'm so sorry about Max. My heart goes out to you.

    Dee - seems like when it rains it pours. We're all here to listen and virtually help in any way we can. Vent away whenever you need to.

    Lynn/Nanci - feel the same way. I had a bad case of the "what ifs" over the holidays. Have no idea what brought it on but it snuck up on me and I had a hard time shaking it. I'm trying to get back into my routine of some meditation/deep breathing every day which seems to help. Something to talk out with my therapist this week.

    Nanci - where do you go in Maine? We love Ogunquit - just over the border from New Hampshire. The place that we're looking at is on a cliff overlooking the Atlantic - The Cliff House in Cape Neddick. It will be off season - I think - so hopefully I can get a good deal on the price. We'll see.

    Julianne

  • FightingTheFight
    FightingTheFight Member Posts: 75
    edited January 2017

    Barb - I'm so sorry to hear about your dog. I know that must be really rough.

    Dee - Please don't feel like you're being a downer. I think we all understand this is a safe space to get our feelings out.


    For me, muscle weakness is the hardest thing I'm dealing with. It makes even the simplest tasks (like getting dressed) so draining. My last chemo is supposed to be the 12th. I feel conflicted. Dreading it, but looking forward to it being over. It feels like if my muscles get any weaker I'm going to need a wheelchair. Which doesn't work living in a 3rd floor apartment.

  • Luwusu
    Luwusu Member Posts: 88
    edited January 2017

    julieanne- we most often go to Ogunquit also- also York which is in the Cape Neddick area. I get emails from the Cliff House occasionally but haven't stayed there. We've also stayed in Kennebunk. An area we stopped in last summer for an afternoon was Portland and I want to go back again. We've also gone to Acadia National Park (in summer) and stayed outside the park - forgot the name of the town. I also want to go to Boothbay Harbor. We live in NH so it's easy to get to Maine.

    FightingTheFight- I sorry you have such muscle weakness. But you are soooo close to being done! Hang in there and this will be soon be in the past.

    Nanci

  • VLH
    VLH Member Posts: 1,258
    edited January 2017

    I hope the weakness resolves quickly once you finish the chemo, Fighting. I've struggled with that issue as well, but didn't know how much it might be related to my Fibromyalgia.

    Lyn

  • Leydi
    Leydi Member Posts: 146
    edited January 2017

    Julesbabe55 - You definitely need to check with your HR on the FMLA. Each company does it a little differently. Most commonly, they require that you use your usual leave (sick, vacation) in parallel with FMLA. Remember that FMLA only guarantees that your job will still be there for you when you return, it is not paid leave. You use your usual leave time to get paid during your time off. So, if I have 2 weeks leave sick/vacation time built up and want to take 12 weeks FMLA, I only get paid for the first two weeks off and then can take the remaining 10 weeks without pay but with assurance that I can return to my job. You can also take FMLA intermittently rather than all at once.

  • Charlene1
    Charlene1 Member Posts: 72
    edited January 2017


    image

    Ringing the bell............Chemo is over!!!!!!!!



  • kshorten
    kshorten Member Posts: 102
    edited January 2017

    Congratulations on Ringing the Bell. It's a great feeling..........

    Had my port removed on Thursday and that was a great feeling too.


  • VLH
    VLH Member Posts: 1,258
    edited January 2017

    Wow! Charlene ringing the bell and kshorten having her port removed. Things are moving along.

    I hate my wig. Barb, Gracie was definitely eying the critter on Mama's head with predatory interest. My best friend was trying to say something nice and the style is cute, but she had to admit that it screams "WIG!" from a mile away. The good news is that scarves and hats are more comfortable anyway.

    Lyn

  • Whistlestop
    Whistlestop Member Posts: 45
    edited January 2017

    WOO HOO Charlene1!!! What a feeling ! ( I am singing Lionel Ritchie Dancing on the Ceiling) FightingTheFightCheering you for the 12th. You Go Girl ! I am right behind you. I look forward to this Fri. the 13th. I will be doing my dance to Dancing Queen and Abba's serenade. Ladies seeing the success is so energizing. Countdown alone seems to provide such a boost. kshortenPort removal must bring a sense of some norm too.

    Abracadabra…Barb, sorry about the loss of your beloved Max. May the memories wrap you like a comforting blanket.

    This last week has had some interesting ups and downs.....UPs - #11 of 12 done. Ultrasound - revealed axilla node clear, and the former 3.75 cm tumor inferior within 6cm fatty cyst is now less than 1cm.

    Venting time..... DOWNs - Tragic loss of neighbors I have known for over 30 yrs. a lovely letter from Humana. day after Christmas....thought it was my new premium. They are eliminating my individual PPO effective 6/30/17.No longer writing in Texas. Individual plans tougher to get in Tx. Will be getting creative. Have some unique parachute plans up my sleeve in order to keep my Dr's and Methodist ...since there are extreme limitations for individual self employed in Texas...Many are pulling out. Will be putting all possible procedures, etc pre June 30th I can. Interesting to have a plan for 15 yrs, only using it the last quarter of the year and then to be hit with the letter, seems a little awkward on timing. ( Ok, rant over for now). There is a better solution ahead as releasing the funky energy opens up to opportunity. ( Thanks in advance for ears/eyes ladies)

    ===========================================================================================================

    image

    Courtesy from more of my support team..POWER Women ( Powerful Outstanding Women Experiencing Results ) ... when they saw me post the saying weeks back.

    Here's to each of you.......Now POWER Women in your own right ! Attitude and Support the skies the limit .

    Terry ( aka Whistlestop)

  • Julesbabe55
    Julesbabe55 Member Posts: 39
    edited January 2017

    Taxol #3 in the books! Hemoglobin number was good - actually went up a bit so no talk of blood transfusions - at least for this week. I can see the beginning of the light at the end of the tunnel.

    Terry - love the pic. It's so great that you have such a large support team! Love the t-shirts.

    Charlene - so great on ringing the bell!! Happy for you! I looked around my infusion center today and didn't see a bell. So when my time comes, I'll be blasting some 80's disco from my phone - complete with pink boa and crown.

    kshorten - congrats on the port removal. I get to keep my friend for the rest of the year to finish out the Herceptin. I'll be glad when that thing comes out.

    Best to all

    Julianne

  • VLH
    VLH Member Posts: 1,258
    edited January 2017

    Julianne, great news on the blood work!

    I had Taxol #3 yesterday myself. My port was initially uncooperative, but they were able to finally draw some blood out so that they could proceed. They didn't have to use the anti-clotting medication, which saved me 20 - 30 minutes in the infusion room. I just wish the darned port would work first time, every time. I hate to think about the cost/hassle of a port study and perhaps facing a fourth surgery in less than 6 months plus now it's a new insurance year with another $5,000 out-of-pocket before I meet my catastrophic requirement. My arm is still really bruised from having to go the IV route last week. Ugh!

    Lyn, Donning her Wendy Whiner Hat. :-D


  • Abracadabra
    Abracadabra Member Posts: 1,369
    edited January 2017

    Hello to all,

    Thank you for your sympathetic messages about Max. It was like the straw that broke the camel's back, but losing him just tipped me over the edge and I was really struggling for a while there. I think I'm back on my feet now!

    So much has happened ... Charlene, congrats! So happy for you to be done!!! Kshorten ... it must be great to be free of the port!

    Nanci - Congrats to you too for getting done with that Taxol. Enjoy your well-deserved break!

    Dee - I'm praying that the specialist has good news for you, and that the cyst turns out to be nothing to worry about. ((Dee))

    Fightingthefight - I'll be thinking of you tomorrow, as you have your last treatment. :)

    Terri - Your energy always amazes me! I was glad to hear that the US results showed improvements.

    Julianne - Way to go on the hemoglobin front! Keep doing what you're doing!

    Connie - Hope you're doing better, and feeling stronger.

    Lyn - It sounds like that port is driving you crazyl! Why can't things just do what they're supposed to do, hmmm? I hope that things settle down for you. I love it when you tell Gracie stories ... keep them coming!

    Have a nice evening.

  • Nfullblume
    Nfullblume Member Posts: 171
    edited January 2017

    hey there ladies!! Just checking in on you guys. Sounds like most of you guys are getting pretty close to being done. I had Taxol 2 today. I'm on dose dense Taxol. Only 2 more!! Wahooooo! Anyone have luck icing to prevent neuropathy? I'm limited to Vit E and B6 per the MO, but I still had numb fingertips in Taxol 1. I iced about have of today's session, so I'll see if I notice any difference.

    Dee, I have a fatty cyst called a lipoma on my butt, it's pretty deep under the skin. I know you were visualizing a lump on my butt. 😂 Anywho, my chemo has even shrunk my lipoma. I'm hoping your cyst is nothing more than another lump. Thinking of you!

    For those that are finishing, give that bell hell!! 1 month from today, I will be!!

  • VLH
    VLH Member Posts: 1,258
    edited January 2017

    I took advantage of my steroid rush from Tuesday's Taxol to run a couple of errands yesterday. I was doing great until the minor exertion of loading my purchases into the van resulted in one of my fun episodes of labored breathing, racing heart rate and feeling like I was going to pass out. I thought I was going to follow up gracefully lying down in the freezer section at Target with keeling over in the Costco parking lot. I barely made it into the van where I antagonized my poor herniated disc by awkwardly flopping with my upper body across the bucket seats while my legs were still in the footwell. Boy, I'm really looking forward to being able to perform simple daily tasks again.

    Nfullblume, my friend is doing the dose dense Taxol, too. With the weekly version, I still have 9 more to go, but I reminded myself yesterday that I'm almost halfway through the 16 week AC+T protocol. Gotta focus on what we've accomplished, right? Reducing butt lumps has to be an unexpected bonus with chemo! :-D

    Hang in there, Barb!

    Lyn the Limp


  • FightingTheFight
    FightingTheFight Member Posts: 75
    edited January 2017

    Luwusu - Thank you so much for the encouragement to hang in there.

    VLH - I'm sorry to hear you've been dealing with muscle weakness also. It makes even the most mundane tasks really hard and tiring.

    Charlene1 - Congrats on making it through your chemo and getting to ring that bell!!

    Kshorten - I'm surprised they let you remove the port. I keep hearing that they want people to keep it in for awhile after chemo, as some just in case measure. Personally I'm eager to get mine removed, once I'm done taking herceptin for the year.

    Whistlestop - Good luck tomorrow and congrats on your last chemo round!! I know I'll feel good. I hope the side effects after this last round are minimal for you. But I'm sorry to hear about your insurance. I'll say a prayer about that for sure.

    Abracadabra - Thank you for thinking of me regarding my last treatment.

    Nfullblume - Sorry to hear about your cyst, but glad to hear that the chemo may be helping to shrink it.

    Finally, I had my last chemo today! It was a relief to get it over with, though I've had some anxiety in the days leading up to it. There was no bell to ring, but my cousin came with me and presented me with a nice bouquet of balloons and my favorite candy. So that made getting through today that much easier. And for my herceptin doses that I'll still be getting every 3 weeks, I'll be getting them done at a different infusion center in the same network (that my MO also goes to) and it will be a nice mental separation to never have to return to the place where I got my chemo. Everyone there is lovely, but I can't help but associate the place with something that makes me feel bad. I thanked all the people there today for being great, but I won't lie and say that I'll miss that place. If I never see it again that'll be fine with me.

    And regarding the muscle weakness, I think part of it recently was exacerbated by retaining water. I felt like a blown up water balloon about to burst for about a week. But a nurse gave me some advice to elevate my legs above my heart. So I've been propping my legs on a pillow at night when I go to sleep the last few days and it has been helping. The swelling has gone down considerably, though I am still retaining some fluid, it's not as bad as before. But at the same time, I did have my MO fill out the form to approve me to get a temporary handicap tag. Since every step counts these days, I need to be able to park as close as possible to my destinations.

    I really hope my side effects are minimal after this last chemo round today. My toes are tingling more than ever before after today. And I'll need to be diligent in taking my Vitamin B12, Vitamin E and Vitamin D3. I don't need to more neuropathy at this stage in the game. I just want to put this part of treatment behind me and work on getting stronger and heading back towards normal.

    Agai, good luck to all the others that are closing in on the last of their chemo also. I'm glad we have each other to cheer us on.

  • Connie1230
    Connie1230 Member Posts: 192
    edited January 2017

    just a quick note...I asked my oncologist about port removal and she said as soon as chemo is done....or within a few weeks anyway.

    Haven't been here in awhile and have a lot of catching up to do. I've had just 3 of the taxol/carboplatin infusions since I had to miss 3 in Dec. So I won't be done until mid March. I so envy those of you who are finishing up

  • Abracadabra
    Abracadabra Member Posts: 1,369
    edited January 2017

    Hi everyone,

    It's a beautiful sunny day here ... the puddles from yesterday's mild weather have frozen solid again, so we're back to icy sidewalks and slippery steps. Pedestrians ... beware!

    Lyn - It must be so unnerving to be caught by those spells of weakness. I know it's tempting to go full-out when energy runs high, but try to rein it in, just a little. Gracie wants her momma home safe and sound!

    FightingtheFight - Yahoo ... it's done! Best wishes for moving onward from this.

    Connie - You and I can travel along together ... I still have 10 more weekly Taxol to go, so I'll only finish in March as well. I hope that you are feeling well these days.

    Hoping that each of you find something to smile about today!

    Barb

  • Abracadabra
    Abracadabra Member Posts: 1,369
    edited January 2017

    Lyn - I thought of you yesterday ... I was walking across the Canadian Tire parking lot, planning to go in to return a few items. As I approached the front doors, I tripped over a slight rise in the pavement, and went sprawling full-out on the concrete. It was shocking, and it hurt. As I lay there for a second or two, my immediate thought was "I must tell Lyn about this!". My next thought was to check to see if my wig had popped off and rolled away (it had not). I hauled myself up, checked myself for damages (not much), straightened my wig, and carried on.

    I wondered if it was Taxol related ... I haven't had neuropathy in hands or feet yet, but I'm definitely more of a klutz these days. I guess it could also be fatigue ... guess it doesn't really matter.

    Anyway, I thought it was funny that you immediately popped into my mind. Hoping that we both have uneventful days today!

    Best wishes to all.

    Barb

  • VLH
    VLH Member Posts: 1,258
    edited January 2017

    FightingtheFight, I'm so glad that you had a celebration in recognition of your last chemo. WAHOO! Most ladies seem to have minimal problems with Herceptin. I hope that's true for you as well.

    How funny that you do a face plant and immediately think of me, Barb. :-D I'm glad you weren't hurt badly, but the wipeout must have been very startling.

    Lyn

  • Abracadabra
    Abracadabra Member Posts: 1,369
    edited January 2017

    Lyn - How could I NOT think of you ... there was the Target incident, then the Costco parking lot close-call ... you are my reference point for these kind of things!

    Seriously, it's disconcerting when you just want to do regular day-to-day things, but your body starts to play tricks on you.

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