Starting Chemo January 2015

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  • mommacat4
    mommacat4 Member Posts: 215
    edited February 2015

    So many beautiful ladies here. You are all so strong. I don't know how you all work through this. I couldn't. I am on short term disability.

    SweetHope, that is precious that dh shaved your head with such care. And your little angel monkey picture is the best. Can I suggest the name Maggie?

    Beachbum, you need to talk to the main clinical nurse about your concerns with your MO. Obviously just talking to the MO is not working. It seems to me they are just blowing you off, which isn't right at all.

    Brandi, I am also praying for you. I hope things do get better for you. Keep on top of them. Pretty much the most pain I have had is in my jaws and teeth. Although today I was on my knees watching my daughters hermit crab and I got very nauseous, my head flashed like it was on fire and I got very dizzy. That was all a new experience for me. I had to lay down on the floor to keep from passing out.

    Jlstacey, keep with the cold foods, plastic utensils, and smaller meals. I had a hamburger tonight because it sounded good but now I am paying for it. And by the time I finished it, I didn't like it anymore. My stomach really hurts and I am bloated and I have taken all the meds I can for it and nothing helps. Yes there is the metalic taste all the time. I have had that since my first Tx.

    Everyone, yes, chemo and Neulasta shots are super expensive. I am trying to get my money reimbursed as I too qualified for financial assistance. They insisted I pay them 1/2 of my deductible before they even treated me. I took that money from my rent account with the agreement they would reimburse me when I was approved for the financial assistance. Now I have been approved and they are bull @!#^ng me about the reimbursement saying the charges have to go through the insurance first. I had to borrow money from a friend to pay my February rent. They don't care. I told the lady in the finance department today on the phone that I will give her till my next treatment (Wednesday February 11th) and I will be in her office demanding my check back. I told her they were so damn money hungry they wouldn't even treat me till I gave them this money and now they don't want to give it back. I am trying to stand my ground with her but it is so exhausting.

    It seems that my se's got away from me this week. Nausea, the big D, now the big C. And of course fatigue. And jaw pain. It makes it tough to eat when your teeth and jaws hurt and everything tastes like metal. Tonight I also have a temp of 100.9 that's also new for me.

    Ladies, good luck with your treatments. Have a Blessed night. Don't ever feel upset for having se's. It's to be expected. And no one should have to suffer from them.

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  • Brandi999
    Brandi999 Member Posts: 143
    edited February 2015

    Sweethope, my monkey name suggestion is Annabelle. She's so cute!

    Well I am finally agreeing to go on short term disability. My WBC counts are not really coming up yet. I've had IV fluids and Neupogen shots the past 2 days and I go in for another bag and shot today. My side effects this time around have been nothing short of horrid. Way easier the first week but harder the second week. The family I work for is really sad to lose me and I'm really sad too but I can't go to work with no immune system and no stamina and try to stay awake all night. I sort of feel like me pushing myself through the last 3 day weekend at work is maybe why I'm in this position right now. I saw someone write "shattered" at the end of her day. That is such a perfect word to describe it. I mostly just feel like I'm torturing myself and trying to have control over a situation I can't really control. It's not worth the self abuse to feed my ego, ya know?

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  • PMR53
    PMR53 Member Posts: 452
    edited February 2015

    Brandi999

    I am sorry that your blood count is not cooperating. I know how much you love your job. I never thought of it like you said but maybe working and pushing yourself is trying to have some kind of control or normalcy in your life. My job was really stressful so I knew I had to stop working right away. Now i don't think I will ever go back to that stressful environment.. I will pray for you today and hope your SE are better. My fingers are going numb here. Taxotere I think. Ugg.

    Patty



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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited February 2015

    Good morning dimccleland, I hope you can rest up and go to the concert, and I hope they sing just for you! Such important dates for you and your children. I am sure they all want you there to share the evening. Sometimes the thing we want to do the most is the one that will make feel the best! Good Luck!

    I so understand the lonely. I have people that care, but nobody really understands how we feel. So many emotions, so many thoughts swirling in our heads all the time, I feel exhausted from it all. All of the what ifs, and I hope it works, and what's next if this doesn't work? It is so hard to try to process it all. We all do the best we can. So much strength from all of the ladies here. And the whole time we have to make huge decisions that could be a game changer for us.

    Carry on Ladies, the next big thing may just be our big thing!

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  • SweetHope
    SweetHope Member Posts: 439
    edited February 2015

    Brandi, you are so right in thinking that you may be overdoing it. I'm sure that great family will get you back with them when you are able. Just keep them updated on your progress as they sound like an extension of your family.

    Now concentrate on you. Become a couch potato; sleep, eat, watch tv, post to us, drink lots of water, nap, eat, watch, post, drink, nap, etc. til bedtime. Enlist a friend for shopping or have food delivered. Your body is telling you what it needs...listen...and pamper it.

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited February 2015

    For all the Ladies on AC - It is rough, or at least it was for me. The funky tasting food, try the plastic forks and spoons. Try different foods. I ate cans and cans of mandarin oranges. They were cold and tasted like something. Getting ahead of the nausea, use the meds and if that is not working ask for something else that will work for you. I never had the jaw pain, maybe try ice packs or popsicles to keep them cold. I just hope you find something that can relieve your pain and frustration with the thing that is going to help us. I hope you feel better, and sleep well.

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  • Brandi999
    Brandi999 Member Posts: 143
    edited February 2015

    I just thought I'd post something I'm actually celebrating today. I have had no nausea for several hours so far!!! I just ate some homemade chicken pot pie and it was glorious!

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited February 2015

    Brandi999, I am so glad that you feel well, and enjoyed lunch. Celebrate as much as you can, we need every victory we can get!

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  • loriekg
    loriekg Member Posts: 263
    edited February 2015

    Yay Brandi999...glad to hear the good news! Hope that is just the beginning...

    Mommacat4—how are you doing? Did your fever go down??

    Dimccleland—I've been feeling pretty sad too…even though I've been getting so much love and attention from friends and family…but, the sadness is there. Yesterday, when I drove by the elementary school where my kids went (now 18 & 16), I had such a strong vision of them walking down the road with their little backpacks. I was struck with such an overwhelming sadness and longing for them I was reduced to tears. Good grief—yeah, I'm normally emotional, but not like this. *sigh*

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  • RV6gal
    RV6gal Member Posts: 331
    edited February 2015

    Brandi999, hope you are still having a nausea free day and enjoying your food!I just wanted to say that I feel that going on short term disability is not a loss of control but rather taking control and allowing yourself the time and resources to focus 100% on you and getting better.Hope your WBC's get sorted out real soon.

    Sweethope, my name suggestions is Lucy. For some reason, she reminded me of Lucille Ball.! Cute and funny!!

    On the subject of being alone in this, I think it is wonderful to have an outlet like this website to share our thoughts and feelings.It is good to have a way to vent. Anytime I share information about cancer, chemo and its side effects with family and friends I sense that they are uncomfortable about hearing it.I know they want the best for me and may even feel a bit guilty about any suffering I have. I think this adds to a sense of loneliness from time to time as I don't like to share too much with them because of this.In some ways, I think this is tougher on them too in a different way and I respect that. I do have moments of sadness (that's normal), but I really don't dwell on it.I look forward and try to think of things I want to do after my treatment is done. Once this is done, I will no longer put off things for tomorrow that I can enjoy today.This is going to be my new mantra!

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  • TeriMP
    TeriMP Member Posts: 89
    edited February 2015

    Hi ladies, I hope you are all doing well!

    Brandi999 I am glad to hear that your nausea has subsided and you have been able to eat. I agree with RV6gal that going on ST disability is a way of gaining control and giving your body the much needed rest it needs/deserves.

    RV6gal I too have a great network of support but also feel lonely at times as they do not duly understand what it feels like to be going through this. They do offer words of encouragement and always say "you will beat this". I understand they want to be positive but sometimes I want a real conversation that involves worse case scenario. I am a realist and like to be well prepared for everything; if I get bad news than I have already prepared myself for it. On the flip side I have also had a who I though was a very good friend become pretty much non-existent once I started my battle and then she proceeded to blame me for pulling away from her. I've known her 15 years and she was my maid-of-honour. I made the tough call to cut her from my life as I don't need to be dealing with that stress at this point in my life. It's terrible to say, but you really do learn who your true friends are when you are faced with adversity.

    Today was my round #2 of TC, I am glad to report no problems (so far). The PICC line worked wonders and I didn't feel the intense pain that I had the first time with taxotere in my veins in my hand. They gave me anti-nausea meds this time (didn't last time) even though I didn't have any nausea. Hopefully I won't need them. Only 2 more rounds left!!

    I wish you all the best and lots of love!

    Teri

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    sweet hope you look so cute with new do. Your DH looks like a doll. How are u feeling?


    Kristin

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    Brandi, how are you, dear. I agree with sweethope's take. You take time for YOU. We nurses care for everyone else and in order to continue our most important mission we need to take care of us! I know easy for all of us on here to tell you take a break when you are the one facing financial implications, but if we don't have our health, what do we have? We must care for ourselves so we have to energy to care for others when we are well. I work all weekend and hope against hope it does not run me down. My work is my extended family just like u and it is therapy for me to be there with my work sisters and bros. so glad you can eat and enjoy. Keep the news coming, friend. Love andblessings to you.


    Kristin

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    hi spooksgirl and Marjo. How are you? Need updates! Miss hearing from you.

    hope all are well today!

    Much love,

    Kristin

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  • Brandi999
    Brandi999 Member Posts: 143
    edited February 2015

    This isn't my first time to go through a huge thing like this... actually this is sort of a walk in the park compared to the other thing, but you definitely find out who are the weeds and who are the flowers. It can also be shocking who sorts out to be what. Often, not what we expect. One thing I learned is if a person is going to hold you to the same behavioral standards as a person going through regular life stress, cut them loose. If they are a true friend they will come around but be prepared to let go for good. When stuff gets this heavy on your shoulders, you realize you have to cut certain things that are weighing you down or be crushed all together. I have learned, after that, not to form strong attachments to people lightly and to be as zen as possible about it when things go by the wayside. I privately thank that person for the positive memories and let them go. Onward and upward.

    I just want to say thanks a bunch to you guys for the support on the ST disability thing. Today I found out my WBC jumped up a HUGE amount. Like I'm in the high end of normal now! It amazes me how it kicks in so suddenly and with such force. No major bone pain either but last night, as soon as I felt a twinge, I took 600 mg of Ibuprofen. Nip that sucker in the bud. Today was so great. No nausea today and with my WBC's in the normal range I actually got to go to a restaurant! I had bbq chicken and there was a wild kitty meowing at me outside so I threw it half my leftovers. It needed my chicken more than I did.

    I actually felt so great that I am fighting the strong urge to work this weekend but I won't do it. I'm just postponing the inevitable and I need to just take advantage of the few good days I have and relax. Not just save all my icky days for at home.

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited February 2015

    Hey Brandi999, fight the urge to work and take care of yourself. We all have a lot of days to work. I am so glad you feel better today. It is so nice to go out and live a little. It does makes the day better, and we can look forward to the day when all of the days are good.

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  • TeriMP
    TeriMP Member Posts: 89
    edited February 2015

    Brandi999 that is wonderful news!! It always amazes me when you feel at your lowest things seem to start falling into place and gets your right back on track!!! It's crappy that it took awhile for your WBC to bounce back but I am happy that they did!!

    Bask in these moments of being able to feel good and eat out (even if you can't quite taste food. ). You are back on track!!

    I tried to work after my diagnosis but my mind just wasn't there (for my line of work I have to be pretty sharp - lending $ and selling mutual funds); I could tell my work was slipping so I asked them to put me on disability. I knew I'd rather be away from work than give out money or sell investments I know I shouldn't because I wasn't thinking straight. I think it was the best decision as he allowed me to focus on getting better.

    You are so right on privately thanking the person(s) for the great memories/ times and then letting go with out looking back. I don't regret my decision, just wish her all the best in the future. I can't be vindictive about it as it gets both of us now where.

    Teri

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  • Cherylfg
    Cherylfg Member Posts: 97
    edited February 2015

    I'm here and doing okay. The fatigue from my last round really did me in. I tried to rest a lot on the couch with my boys. They loved all of the TV time! I had my third infusion today and it was fine. My MO gave me oxy for bone pain and a huge amount of vitamin d to bring up my vitamin d levels.

    My sister had a breast MRI and they found what they think is a fibroadenoma. Her biopsy was yesterday and now we all playing the waiting game. One good thing that has come out of my diagnosis is that she had an MRI and they found it early.

    Brandi- I agree about short-term disability. I cut back from half to quarter time at work because of chemo and I think it's made a huge difference.

    Sweethope- I love the new do! Your husband looks so sweet.

    Teri- I'm glad chemo went well for you. How are you feeling?

    Cheryl

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  • Tennisfan
    Tennisfan Member Posts: 114
    edited February 2015

    Kristin, thanks for asking! Hair loss has definitely begun and tomorrow is AC cocktail no 2.

    Saw my MO today, and he asked me about what I take for heartburn. Zantac, I replied. He swear that Losac is far more effective but I have to take one a day everyday whether I feel well or not. He assured me there are no side effects and he has been taking it himself for the past 15 years so I will give it a try as it woke me up in the middle of the night the last time around. My nails are doing good so far (I am obsessed with nails always looking good so that's a relief).

    My neutrophile count was not as high as I hoped and I barely escaped the Neupogen shot. They will check me again between the 7 and 14 days and decide if I should get it or not. My onco nurse said to stuff my face with fruit containing vitamin C during weeks 2 and 3 (but vitamin C pills are forbidden during chemo). We cocluded that kiwis are not on any no no list and it is very rich in vitamin C. Apparently it boosts the immune system. More on that later!

    Bonne nuit my virtual friends! I wish you a full, uninterrupted night of restful sleep, all of you!

    I almost forgot to mention that my suggestion for the cutie pie baby monkey is Charlotte...

    Marjo

    P.S. Glorious tennis training yesterday. A little consolation for the weekend that awaits me lol.

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited February 2015

    Good evening! I am so glad that you are all doing well. The fatigue is just that, and I find that I am still dragging from chemo, surgery, and now rads. The constant running and the side effects will take a toll also, so take care and rest when you can. But fun tv time with the kids sounds like a quiet time Cheryl. And Marjo playing tennis, great exercise. TeriMP I hope you are feeling well also, and getting rest and time to take care of yourself and relax.

    You got this, it's closer to the finish line, and ringing the bell! You will be there before you know it.

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  • spookisgirl
    spookisgirl Member Posts: 96
    edited February 2015

    Hi all,

    I am around, having a bit of a strange day-woke up with severe back pain, but can't tell if I have pissed it off during activity, it's the chemo or my version of menstrual cramps, or a wacky combination of all 3 :(. Tylenol and muscle relaxants don't seem to be helping, and the worse thing is sitting, so I have been pacing a lot today. I actually went to dance to see if that could help work it out, but while the moving seems to have been good for me, still can't sit very long. Icing now and will do heat next, and trying muscle relaxants again. If it keeps up tomorrow I will have to go back to the health clinic to see about stronger pain meds. Thankfully I have acupuncture tomorrow and she can focus on my back. It keep alternating between feeling like it is seized and spasms.

    Other than that, I seem to be doing ok. Had my 'pre-op' for my port placement on the 16th so have the pain prescriptions and everything for that. Blood pressure was a little low so doc told me to be careful doing activity. Starting to bruise everywhere (not a huge shock being a redhead--I bruise easy on good days). Having some heartburn here and there, but it is manageable with tums. Got my head shaved on Tuesday, and noticed today it is starting to come out much easier (what is left).

    One week to go until my next infusion. Feel like I am just waiting all the time and it is starting to weigh on my. Waiting for my hair to fall out, new side effects, my next infusion. Keeping busy, but it really feels like a slow process. Just want to be done! Saw my surgeon this week to discuss my next surgery (Dx Mas with DIEP Recon) and she said she would like to remove all my lymph nodes on my right side so I can avoid rads near the transplanted tissue (it would be under my arm only). I am really against this idea because I don't want to run such a huge risk for lymphoedema--that would affect dance and my job! I see the radiation oncologist for the first time next Thursday to decide if I need rads or not. Hopefully that goes well and I will have a better idea what will happen.

    Hoping my back 'smartens' up for me tomorrow. It's hard to treat when I am not sure what is causing it--even my doc couldn't be sure.

    I hope everyone is doing ok,

    Jenn

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  • mommacat4
    mommacat4 Member Posts: 215
    edited February 2015

    Brandi999, glad to hear about the no nausea. I hope you keep that relief. I also pray that the WBC'S come back for you. I also agree with everyone else that you need to rest and take care of yourself. But keep the family you work for close. I believe they could be a key to helping you recover Because they mean so much to you.

    Rv6gal, I like the name Lucy for the monkey. That's just too cute.

    Lorikg, yes my temp did come back down, thank you.

    For those of you who have had treatment today, I hope it went well for you. well wishes to no side effects and/or controlled side effects.


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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    hi jenn, could you get a lymph node dissection involving say, 8 more nodes just to be sure no more nodes are pos? Just a thought... I had ten removed and only 2 were pos- the sentinel and node #2 just next on the chain. I feel my likelihood of lymphedema is much less likely than someone with all of them removed. Still, I will have 6 weeks of rads to axillary and right chest wall... I guess it is a question of which you prefer but I would rather have fewer nodes removed, but enough to know about lymphatic involvement as this increases likelihood of recurrence and then have the rads which is designed to prevent recurrence. I don't think it needs to be all or nothing. Perhaps a second opinion is in order?

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    sorry, jenn, I only had eight removed..


    Kristin

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    Brandi so glad u r feeling better and your wbcs jumped up.

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    Cheryl, so glad your sis had MRI with her bx. On US my tumor was estimated to be less than 1.5 cm. On MRI the est was 4.8. This much larger measurement was in keeping with the path report post surg. Please keep us posted on your sisters result, praying for hers to be benign! Btw, my sis just completed her treatment for BrCa including 6 rounds of chemo of C/T and 33 rads. Her cell type was the same as mine but no lymphatic involvement so her treatment was far less aggressive than mine. She did very well. We are both shocked that we got hit with cancer within one year of each other. Makes us wonder... Nearby refineries growing up? Too much Popeyes chicken and donuts?

    Cheryl it sounds like you are taking good care of yourself and your boys. There is little that my son loves more than snuggling and watching the cartoon regular show, a documentary or a comedy with mom and he just turned 12! Good bonding time. Take care!


    Kristin

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    one last thing....

    The Cleveland clinic has a risk calculator for lymphedema. You answer the questions and it tells you your lifetime risk. Mine was 18% based on ht/wt and other factors such as how many lymph nodes were removed, whether you are receiving chemo on ipsilateral arm with tumor (med jargon for same side as opposed to contra lateral, opposite side) and if you will have radiation to axillary region, etc. you will need your height in meters and weight in kilos, for all the Americans on here:) let me know if you have trouble finding the tool.

    Kristin

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  • thecolorpurple
    thecolorpurple Member Posts: 126
    edited February 2015

    Patty,

    Did you hear about the 30 gm glutamine to prevent neuropathy? This is a divided daily dose- 10 gm three times daily. Ask your OD about it if you haven't already... Beachbum has told us she has irreversible neuropathy as well as cardiac complications due to these harsh meds we are getting... I hope you get the feeling back! Keep us posted :)

    Kristin

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  • TeriMP
    TeriMP Member Posts: 89
    edited February 2015

    Hi Cheryl / beachbum - I am feeling pretty good so far. Was able to hop on the treadmill this morning and get a 2km walk in while I still feel good and have energy. I haven't really had any side effects creep up on me yet, just some minor facial flushing and heart burn. I'm sorry to hear about the bone pain Cheryl but I definitely know how painful it can be, I was also given oxy for this round. I hope I won't need it. How are you two ladies feeling today? Beachbum, was your MO able to get you anything for your pain?

    Tennisfan -good luck with your treatment today!! I too have my hair jumping ship at a very fast pace, I have resorted to using a lint roller on my head to assist with the shedding as it is driving me bonkers (I can't remember if I read beachbum did that too it if it was one of the other ladies). I will be happy was it's all gone as I am shedding worse than my dogs!!

    Spookisgirl - waiting is probably one of the worst parts of the treatment as it gives your brain copious amount of time to wonder! I am happy that you have been able to fill your time with dancing and keeping yourself active. Keep it up!! Idon't know if this would be an option but would they be able to delay surgery until after radiation to give your skin time to heal and then do the recon? I did not need radiation so I do not know too much about it.

    Wishing you ladies the best and a speedy recovery from treatment!!

    Lots of love.

    Teri


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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited February 2015

    Hey TeriMP, if you don't have a lint roller, duct tape works! I also washed my head with Johnson's baby shampoo and a lot of it washed off. I used a soft net bath puff. Good luck. Funny how losing the hair we all dread but as soon as it starts to go we all want it gone - now! My hair is now a little over 1/2" short. With a lot of gray, I dyed it for years and did not know how gray! That freaked me out when I shaved it down more than having no hair.

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