Starting Chemo October 2014

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  • nottoday
    nottoday Member Posts: 162
    edited February 2015

    Congratulations, Linda!

    So glad this part is behind you - and soon - all of us.

    Hope radiation goes smoothly and life starts to be focused on happier things!


  • Tobycc
    Tobycc Member Posts: 789
    edited February 2015

    I have two more CMF treatments. Saw radiologist last week to discuss rads. He said because of the internal / upward position of my tumor he wanted a scan of my breast.

    Next think I know my MO ordered a full pet scan and now I am nervous. Anyone elses MO order this? I have no symptoms/ pain anywhere

    Kath

    CONGRATS Linda!!!

  • cbooklvr
    cbooklvr Member Posts: 66
    edited February 2015

    Yes I had a PET scan, compared to my breast MRI it was fine. On my back and not enclosed in the machine. I did have to drink some gross liquid chalk like stuff. The sat still for 45 min in a recliner before the scan.

    Cherice

  • Tobycc
    Tobycc Member Posts: 789
    edited February 2015

    Thanks Cherice! How long before results?

  • cbooklvr
    cbooklvr Member Posts: 66
    edited February 2015

    1 or 2 days for me

  • Ilovecoasters
    Ilovecoasters Member Posts: 199
    edited February 2015

    My insurance won't cover a PET, just Cts and MRIs. I have my ct on 3/13. I'm concerned if there is Cancer somewhere else in my body it won't be picked up. I asked my oncodoc how will I ever be NED if I don't have a full body scan. He said unless I had symptoms, my insurance is not going to budge.

  • Becca9800
    Becca9800 Member Posts: 79
    edited February 2015

    No CT, MRI or PET here. Well why not? MO explained studies show that while testing may find a problem sooner, the outcome is the same. I'm good with that.

    Finished chemo Jan 28. Muscle aching started about two weeks later. Every muscle in my body just aches, gets worse as the day goes on. So bad by bedtime I have to pull myself up every step to get to my bed. Otherwise feeling good. Taste buds coming home! YAY! Must be careful though, put two pounds on already :( Had second radiation tx today. So far so good.

    Went to see my PCP a couple of days ago, showed her this little flesh-colored painful lesion on my ear. She took one look and said oh I think that's a basal cell carcinoma. I laughed right out loud. She looked at me like I was a nut, I mean who laughs when they're told they probably have a skin cancer. I just couldn't believe the irony of it all.

  • nottoday
    nottoday Member Posts: 162
    edited February 2015

    Dear all,

    My MO and BC surgeon also seem to forgo scans. My surgeon said they found that when they scanned routinely women just held their breaths until the next scan, and aside from quality of life issues, they don't think there's a survival benefit. Asymptomatic is as good as it gets, one said.

    This no-testing strategy is a little hard for me to wrap my mind around, and I'm not sure I agree. On the other hand, I see their point and certainly don't want to be living from scan to scan. I'll probably read up on recommendations for scans after surgery and adjuvant treatment. I'll be getting at least manual exams for local/regional recurrence after BMX.

    Becca, sorry about the lesion. I think I would have laughed, too. I mean, what next!!?!

  • Tobycc
    Tobycc Member Posts: 789
    edited February 2015

    thank you all so so so much. I did find out why: my Rads doc wants to make sure all is clear before he does tattoos and rads. I had chemo today: only ONE more 3/21: then on to rads: Scan was asked for breast: MO asked for neck to mid thigh: my ARNP today said, he is just being thorough: they don't feel anything, etc.

    Skin Cancer: NOT to make light of it: am 3rd generation native Floridian. go to dermatologist every three months and get at least a dozen "spots" frozen off: a couple basil and squamous removed in docs office.

    Wonder if there is a connection. Too tired to google, and not sure I even want to know: but SO glad you caught it now. I would have laughed too

    Hugs and many many thanks for your support

    Kath

  • She-Angel
    She-Angel Member Posts: 149
    edited March 2015

    Hi Ladies, catching up on the threads while awaiting the start of a conference I am attending at Sunset Beach, NC. I have time between registration and was looking forward to getting in the thread. I actually did look up the "Casting for Recovery" program in this area the location is breath taking but I would have to be sedated for the drive, it is real mountain driving which I am a wreck driving nerves just shot. I remember the MO saying it would take about a month to get the meds out but my fingernails hurt so bad. I can't button anything and opening a can of beverage is impossible. Saturday I had my medical massage and I was so tired afterwards I had to go home and take a nap. It was like the switch was turned off. The same thing happened yesterday. I had a 3 hour drive and by the time I got here I could barely text the honey that I made it safely before I had to lay down....it was 2:30 in the afternoon. I am suppose to be getting stronger not weaker, what gives? It is so good to read about the continuous movement forward at our various stages. Today I actually saw a couple of eye lashes that I could put mascare on..its the little things. Lol

  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited March 2015

    two months post treatment, my fingernails have decided to come off :-(. This is bothering me more than the hair loss. At least I can wear wigs and hats on my head, but no way to hide fingernails unless i wear gloves, and that would look weird. Plus I'm in rads now and I have quite a bad patch of skin, same place where they will do the boosts. Cancer, the gift that just keeps giving.

  • Ilovecoasters
    Ilovecoasters Member Posts: 199
    edited March 2015

    Sjacobs,

    Did you have any nail issues at all during treatment? Nail loss would be devastating to me. It's my "thing". Everyone always looks army hands to see how I have them painted.

    My hair started sprouting last Tuesday. I have stubble over my entire head and it's already about 1/8inch just in the back. It's also coming back in the bikini area. Still no brows or lashes.

    I have two chemo to go. Last nights ordered a Wonder Woman tshirt from Amazon. Plan on wearing to my last treatment.

  • MJS1266
    MJS1266 Member Posts: 222
    edited March 2015

    I just had my last Chemo, Taxol. I'm so glad to be done with chemo. It was a bit anti-climatic. I have some neuropathy in my hands and feet mostly a loss of sensation. The PA did a touch test and said it was milder than she expected and anticipates improvement in 3 to 6 months. She thought it would go away all together with some time. I hope she is right, it isn't painful but annoying. Surgery next month and then on to rads. One step at a time.

  • nottoday
    nottoday Member Posts: 162
    edited March 2015

    MJS1266: Congrats on completing chemo! That's a big step forward.

    ilovecoasters: I checked with the local rep for Casting for Recovery and she said to keep your name in the hat. You will get chosen eventually. I'm sorry it wasn't this year.

    Sending good wishes to all October ladies.

  • She-Angel
    She-Angel Member Posts: 149
    edited March 2015

    Sjacobs, sorry to hear about the fingernails. Can they adjust your meds? Mine did not fall off however they all turned black, and are still black hence why I keep them painted right now. They are super sensitive and hurt, I can' t button clothes or hook jewelry. A friend advised hers fell off and they changed her meds. It can't hurt to ask the oncologist,they have made such strides with the meds now. If nothing else you can opt for the Michael Jackson look and tape up all the tips, just put a bandaid on before to pad the fingers. I think he said it was an Asian good luck thing, but mayhaps he was having a health issue too.

  • Tobycc
    Tobycc Member Posts: 789
    edited March 2015

    My nails lifted off after becoming dark yellow and really hard. BUT, no pain at all, and they are growing quickly! Hair sprouting now also: She, thought of you with the sweats over the weekend: bet you don't miss those!!!

    Hang in dear sisters, onward and upward

    K

  • Redporchlady
    Redporchlady Member Posts: 113
    edited March 2015

    From talking to others and reading the comments I think if you are Triple negative you are more likely to have scans because it is so agressive and there is nothing you can take for 10 years. My last carboplatim was 2 weeks ago and this Friday is my last Taxol!! Very excited and it has been fun watching all you gals come up on your last chemo treatments.

  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited March 2015

    Thanks for all the support re: my fingernails. I am done with chemo, so no meds to adjust. I'm going to have to accept that I will likely lose all of my nails, damage is done. Before chemo, my nails were a thing for me too. I had acrylics for years, and had them done every two weeks. I lost my left thumbnail last year after closing it in a car door. It took 9 months to grow back properly.

  • Tobycc
    Tobycc Member Posts: 789
    edited March 2015

    Redporch you are on your way! I found outwhy pet scan: radiologist wants to make sure all clear before rads start in April

    Pet scan tomorrow at 11 EST

    Not too worried: have faith: just want some fruit, but that can certainly wait until I can have carbs after test tomorrow

  • She-Angel
    She-Angel Member Posts: 149
    edited March 2015

    LMBO, night sweats gone, no way. I have been having flashes even worse and Friday will make two weeks since the last treatment and I am still only sleeping 3 1/2 hours. I find that one Tylenol pm and a light toddie with a squirt of adult beverage gives me a full 5 hours. I tried not doing it that way last night just the toddie no pill, I was up in 2 hours and tossed and turned all night which made for a trying day since I had a 3 1/2 hour drive back from the conference.

    I have a little peach fuzz on the back of my head, the wild thing is that at night when I have those flashes my head becomes super hot, the pillow even gets hot. I feel like Drew Barrymore in Firestarter. I was having a meeting with my partner when I got back to work today and I swear in the span of 20 mins I took off and put on my sweater 5 times just because I would go hot, cold, hot, cold, hot, cold. Last week I went in my office dead bolted the door and laid on the sofa in my underwear until I stopped sweating. I feel like I am about to jump out my own skin. I know it will pass as will the sore fingers but when you are going through it you just want to scream.

    Now I am reading about the scans, and us triple negatives are more prone to getting them? I wonder if that is if you are getting radiation. Since the 5 lymph nodes they took were clear although clearly in distress and I am having a double mastectomy the MO said no radiation needed especially with the tumor completely going away feeling the chemo would take care of the rest. I will be doing some additional research, as always reading the posts are always informative.

  • Redporchlady
    Redporchlady Member Posts: 113
    edited March 2015

    I have all my fingernails but you can tell where I had the red devil back in October and November as my nails have a discolored look. Thank goodness the new nail growing in looks better. I thank my wonderful husband for the fact I did not lose my nails as he did all the dishes for 5 months!

  • She-Angel
    She-Angel Member Posts: 149
    edited March 2015

    Hi group, just a quick check in from work. My fingernails are still super sensitive and hurt but are still hanging in there. :-) No sign of any real hair yet and Friday will make three weeks since the last chemo treatment. I did get a few more eyelashes though. :-)

    Surgery in 8 days, ready to get it done and move forward. My hope is for everyone to be experiencing some type of rest between treatment where they are not having severe side effects.

  • Ilovecoasters
    Ilovecoasters Member Posts: 199
    edited March 2015

    You know what's worse than cancer and going trough chemo - finding out your position is being cut and you only have your job until May. I've been with the same school district for 18 years. Perfect evals. This is all because of funding. Who the hell is going to hire me knowing I still have a lot of treatment and surgery to deal with? Feeling like giving up.

  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited March 2015

    Ilovecoasters, you can't seem to catch a break. So sorry to hear about your job. I hope that things work out for you.

  • ml143333
    ml143333 Member Posts: 658
    edited March 2015

    Ilovecoasters - don't give up!  Maybe there will a silver lining in the job being eliminated and you will find something better!  I haven't lost my job, but am applying for a different job with the company I work for.  My dilemma is whether or not to tell them about my cancer.  Although my treatments will be done in April, I will still have at least one more reconstructive surgery and doctor visits and lab work every six months for who know how long.

    Hoping that you find a better job!

  • Ilovecoasters
    Ilovecoasters Member Posts: 199
    edited March 2015

    My medical insurance will end in May. I have over $20k still in bills to pay and upcoming radiation will be $50 a day copay. Was supposed to have a hysterectomy overthe summer and I still have expanders. Feeling like rock bottom.

  • ml143333
    ml143333 Member Posts: 658
    edited March 2015

    Ilovecoasters - I work in a hospital.  Check with either a Breast Cancer Navigator or the Social Worker to see if there is help for copays and medical bills.  Get their help in working with the hospitals about payment plans.  Most hospitals have financial assistance programs that can help.

  • Ilovecoasters
    Ilovecoasters Member Posts: 199
    edited March 2015

    Chemo and radiation are at private practices. The hospital wouldn't even schedule my surgery unless we put 10% down on an estimated bill. It's all just too much right now. None have been flexible about payment. Positions are scarce when you are a school administrator, especially when every Principal in your district knows you have cancer.

  • ml143333
    ml143333 Member Posts: 658
    edited March 2015

    I am so sorry you are going through this.  I have chemo at a private practice and they said that there are special funds set up to help with co-pays.  I didn't qualify, but maybe your center has these programs as well? 

    I did some research on the web to try and help.  I didn't actually go into each site though.

    http://apply.lifecreditcompany.com/dynamic-landing-page-v1/?Title=Cancer-CoPay-Assistance&Intro=Financial%20Assistance&Type=cancer&adgroup=Cancer__Copay&gclid=CjwKEAjw8oSoBRCss4qDrP3Y7yUSJACKumZ9rJVc6q7wtVOds-GlhB5WjxlS1uk6yvwgwUSUz2C6mhoCDNfw_wcB

    http://www.copays.org/resources/breast.php

    http://thepinkfund.org/the_pink_fund_state_resources.php

    http://ww5.komen.org/BreastCancer/FinancialResources.html


     

  • MJS1266
    MJS1266 Member Posts: 222
    edited March 2015

    ilovecoasters: Cancer is covered under the Americans with Disability Act of 1990. Your employer can't discriminate against you because of your illness. This includes firing as well as not selecting you for available jobs for which you are qualified. I would check on who the EEO counselor is for the district and find out how to file a grievance/complaint. If they don't have that type of system then go to www.ada.gov and there are directions on filing a complaint. Often just raising the issue with the appropriate persons changes attitudes. Employers do not want to go through an EEO investigation. I know this is hard particularly when you are facing cancer. There are also health insurance options through COBRA or "Obamacare". Hope this might help.

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