emotional rollercoaster

cahjah75
cahjah75 Member Posts: 2,631
edited March 2014 in Breast Cancer #1
I met with oncologist yesterday and he recommended chemo. I was so prepared by reading all of your posts about chemo & rads before my bilateral mastectomies. Then I had my post op and my surgeon said because the margins were clean and the lymph nodes were negative he didn't think I would need anything besides Tamoxifen. The oncologist told me because of my family history and the size of my breast cancer tumor he highly recommended chemo to be possibly followed by radiation and then the Tamoxifen. Sooooooo the WooHoo went to OhNo!

Thursday I meet the onco nurses for teaching. Has anyone else had this????

July 30th I get a port put in and my first chemo is August 10th. The oncologist said I'm a high risk for infection and I've been anemic before because of all my surgeries. I will be on a 21 day cycle and will get the Neulasta shot the following day. I think I heard someone say I was getting TC??? I still don't know how many rounds. I don't care about losing my hair or having no breasts. I do care about more pain. He said I could get pain meds for the Neulasta. I already have osteoarthritis with lumbar stenosis and my left knee is bone on bone. I can't get injections in my knee or lumbar area until treatment is done. I already sleep at least 8 hours unless my knee is throbbing. I know I will get through this but I don't have to like it.

I went to the local CVS and bought Biotene toothpaste and mouthwash. I also bought Tom's of Maine deodorant. I'm hoping I don't gain any weight because I've been trying to lose 20 pounds I recently put back on.

I see my surgeon July 27 and will get a script for prosthetic bras and prostheses.

August 3 I'm having a needle biopsy on my thryroid because the endocronologist saw something on an ultrasound. What else can happen!?!

Thanks for letting me vent. I've tried to prepare myself because I'm more afraid of the unknown. So for all of your words of wisdom - no matter how trivial or embarrassing, please remember that there are many like myself who keep looking for the what ifs and what might happen. Your answers help a lot!
Char

Comments

  • greyhoundluvr
    greyhoundluvr Member Posts: 402
    #2
    Char -
    Sorry you didn't get the news that you were hoping for. I thought that by having the mastectomy and having such a small tumor that I was going to be done after surgery. I got surprised with 2 positive lymph nodes. The chemo training is pretty common - they will go over with you what to expect, the chemos you will be getting (sounds like Cytoxan and Taxotere which is very common for us), what side effects are possible and what to do if you have them. I found it very helpful. The Neulasta can be tough - while I found it harder than the chemo, there are also a lot of women who have no problem at all with it. And it did keep me from ever having problems with my white count dropping,infections, etc. so it seemed worthwhile.

    One step at a time and you will get through this. You know that we are all here for you every step of the way!

    Chris
  • Jean 0609
    Jean 0609 Member Posts: 2,462
    #3
    Hi Char,
    Yes, I do know what you are going through. Been riding the same emotional roller coaster myself. After my mastectomy my surgeon felt like I was done. However, my oncologist had other thoughts. My lymphnodes were negative too. My onc recommended 4 chemo treatments (Taxotere & Cytoxan), along with Herceptin (since I was HER+) for one year. She said this was her recommendation and that's what I did. Have had 2 of my 4 treatments (once every 3 weeks). Plus have to go back 24 hours after the chemo for the Neulasta shot). So far so good...no serious problems with either the chemo or Neulasta. I also had a port installed and boy am I glad I did. Hang in there. Hopefully, there will be more ups on your ride than downs. Hugs :>) Jean
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    #4
    Whoo hoo to Oh No!
    Char -

    My experience was different, but has some similarities to what you're going through. I had a lumpectomy for Stage 1 IDC with clear nodes, and thought I would get to skip chemo. We decided to do the Oncotype DX just to be on the safe side to see what benefit I might get out of chemo, if any, but my oncologist was pretty sure that my score would come back very low based on the pathology report. Well, my score wasn't really high, but it wasn't low either, which made my decision even tougher. I ultimately opted for the chemo (I also had the neulasta shots) and had 4 rounds of C/T.

    It's no picnic, but it is doable. I was very fortunate to not have much paid from the Neulasta, but some others have had that. Many have recommended taking either Benadryl or Claritin which seemed to help with the pain, so you may want to discuss that with your doctor or the onco nurse when you go for your "teaching" (they didn't teach me anything, so I don't know what happens there). If the Bendryl works for you maybe you won't need pain meds, or at least not as much.

    As far as the weight gain, I did gain about 15 pounds, but I just decided that weight gain was going to be the least of my worries during chemo and I pretty much ate whatever I felt like. For me, it wasn't really the drugs (and it was the steriods they give you to counteract the chemo, not the chemo itself that increased my hunger) that actually put weight on, but what I was shoveling into my mouth. My motto was pretty much "I have cancer, so if I want a cookie, I'm going to eat a cookie, dammit!" If you can manage to shovel healthy foods into your mouth instead of what I did, you may not have that problem. If you do, though, just remember that the weight will come back off and just concentrate on what you need to do to get through this.

    Keep us posted on how you're doing and how your thyroid test comes out.

    Take care,
    Cindy
  • sparkle1
    sparkle1 Member Posts: 242
    #5
    cindycflynn said:

    Whoo hoo to Oh No!
    Char -

    My experience was different, but has some similarities to what you're going through. I had a lumpectomy for Stage 1 IDC with clear nodes, and thought I would get to skip chemo. We decided to do the Oncotype DX just to be on the safe side to see what benefit I might get out of chemo, if any, but my oncologist was pretty sure that my score would come back very low based on the pathology report. Well, my score wasn't really high, but it wasn't low either, which made my decision even tougher. I ultimately opted for the chemo (I also had the neulasta shots) and had 4 rounds of C/T.

    It's no picnic, but it is doable. I was very fortunate to not have much paid from the Neulasta, but some others have had that. Many have recommended taking either Benadryl or Claritin which seemed to help with the pain, so you may want to discuss that with your doctor or the onco nurse when you go for your "teaching" (they didn't teach me anything, so I don't know what happens there). If the Bendryl works for you maybe you won't need pain meds, or at least not as much.

    As far as the weight gain, I did gain about 15 pounds, but I just decided that weight gain was going to be the least of my worries during chemo and I pretty much ate whatever I felt like. For me, it wasn't really the drugs (and it was the steriods they give you to counteract the chemo, not the chemo itself that increased my hunger) that actually put weight on, but what I was shoveling into my mouth. My motto was pretty much "I have cancer, so if I want a cookie, I'm going to eat a cookie, dammit!" If you can manage to shovel healthy foods into your mouth instead of what I did, you may not have that problem. If you do, though, just remember that the weight will come back off and just concentrate on what you need to do to get through this.

    Keep us posted on how you're doing and how your thyroid test comes out.

    Take care,
    Cindy

    Cindy
    Thanks for mentioning
    Cindy

    Thanks for mentioning the weight gain. I expected to lose weight not gain.
  • Hubby
    Hubby Member Posts: 325
    #6
    Claratin for Neulasta Pain
    Someone suggested that my wife should take Claratin the day before a next three days after the shot to help with the Neulasta pain. I don't know if it is helping, but she doesn't seem to be having the pain. Ask the chemo nurse and your oncologist.
  • alexlib_mom
    alexlib_mom Member Posts: 46
    #7
    neulasta pain
    I didn't have any of the pain from Neulasta that people talk about. My side effects (from TC) were just being tired, and not having much taste in my mouth. Oh, and hair loss, but that's a given. The TC was not as bad as I thought and I found that the oncologists can really help with side effects.

    I didn't have a port - only four infusions and I opted to just do them through the veins. Either way is probably ok.

    Best of luck - the roller coaster is what we all are on.

    Stephanie
  • Pinkpower
    Pinkpower Member Posts: 437
    #8
    cindycflynn said:

    Whoo hoo to Oh No!
    Char -

    My experience was different, but has some similarities to what you're going through. I had a lumpectomy for Stage 1 IDC with clear nodes, and thought I would get to skip chemo. We decided to do the Oncotype DX just to be on the safe side to see what benefit I might get out of chemo, if any, but my oncologist was pretty sure that my score would come back very low based on the pathology report. Well, my score wasn't really high, but it wasn't low either, which made my decision even tougher. I ultimately opted for the chemo (I also had the neulasta shots) and had 4 rounds of C/T.

    It's no picnic, but it is doable. I was very fortunate to not have much paid from the Neulasta, but some others have had that. Many have recommended taking either Benadryl or Claritin which seemed to help with the pain, so you may want to discuss that with your doctor or the onco nurse when you go for your "teaching" (they didn't teach me anything, so I don't know what happens there). If the Bendryl works for you maybe you won't need pain meds, or at least not as much.

    As far as the weight gain, I did gain about 15 pounds, but I just decided that weight gain was going to be the least of my worries during chemo and I pretty much ate whatever I felt like. For me, it wasn't really the drugs (and it was the steriods they give you to counteract the chemo, not the chemo itself that increased my hunger) that actually put weight on, but what I was shoveling into my mouth. My motto was pretty much "I have cancer, so if I want a cookie, I'm going to eat a cookie, dammit!" If you can manage to shovel healthy foods into your mouth instead of what I did, you may not have that problem. If you do, though, just remember that the weight will come back off and just concentrate on what you need to do to get through this.

    Keep us posted on how you're doing and how your thyroid test comes out.

    Take care,
    Cindy

    Cindy, totally agreed with
    Cindy, totally agreed with you. Though I am not happy with all the weight gain, I know most of it had to do with the Occasional, ok more the Occasional, piece of cake or ice cream I was shoving in my mouth. I too had the same thought, "I am fighting cancer" besides life can be short, so why not enjoy the wonderful things in life, including double deck chocolate cake!
    Lupe
  • cahjah75
    cahjah75 Member Posts: 2,631
    #9
    Thanks for
    Thanks for all your comments. I need the port because my veins are not good. (Too many surgeries over the past few years.) I met with the onco nurse yesterday (I went to high school with her so it's nice having someone you actually know). She went over everything and pretty much answered all my questions. I am having TC. I still don't know how many treatments but I will see my oncologist just before every treatment. My problem is that I already experience several of the possible side effects; ie: muscle & bone pain, some neuropathy, weight gain from lack of exercise. I'm almost 4 1/2 weeks post surgery and steri strips are finally falling off one by one. I counted 60 total. I'm actually glad it's been slow because I'm a high risk for infection. So, on that note the onco nurse is calling in 4 scripts for me. I have to take some pills the day before chemo. I will also be given something to counteract the chemo cocktail and one for nausea. While I was there a woman came in for the Neulasta shot. I'm praying that I don't get many side effects. I'm very good at sleeping and not doing much so as long as I'm not in pain this too will pass:)
    Char
  • mimivac
    mimivac Member Posts: 2,143 Member
    #10
    cahjah75 said:

    Thanks for
    Thanks for all your comments. I need the port because my veins are not good. (Too many surgeries over the past few years.) I met with the onco nurse yesterday (I went to high school with her so it's nice having someone you actually know). She went over everything and pretty much answered all my questions. I am having TC. I still don't know how many treatments but I will see my oncologist just before every treatment. My problem is that I already experience several of the possible side effects; ie: muscle & bone pain, some neuropathy, weight gain from lack of exercise. I'm almost 4 1/2 weeks post surgery and steri strips are finally falling off one by one. I counted 60 total. I'm actually glad it's been slow because I'm a high risk for infection. So, on that note the onco nurse is calling in 4 scripts for me. I have to take some pills the day before chemo. I will also be given something to counteract the chemo cocktail and one for nausea. While I was there a woman came in for the Neulasta shot. I'm praying that I don't get many side effects. I'm very good at sleeping and not doing much so as long as I'm not in pain this too will pass:)
    Char

    Hi Char,
    The unknown can definitely be scary, but it looks like you have a good handle on things. I did have some bone discomfort with Nuelasta, but it only lasted a day after each injection. The Claritin didn't seem to help me much, but I know others for whom it really worked. It wasn't really a pain, but more like severe achiness, which I could deal with. I didn't actually gain any weight from the chemo because I was eating really healthily. I got on a health kick, which I maintained throughout treatment. However, I have gained 15 pounds post chemo, mostly from falling off the healthy-eating wagon a few days each week. That will do it. Trying to lose about 30 pounds now, but I seem to just stay at my current weight. Very frustrating. Anyway, my best to you. You will make it through this.

    Mimi

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