New and looking for advice

slynne
slynne Member Posts: 31
edited March 2014 in Breast Cancer #1
Good morning, I am 47 years old and was diagnosed in December. I had a lumpectomy - 1 cm with clean margins, they did a sentinal lymph node biopsy and after a special test found microscopic cells so I went in for a 2nd surgery to have my lumph nodes removed - they were clear. I have had 3 doses of Adriomyacin (sp)- the 3rd dose put me in the ER and they decided not to give me a 4th. I have had my first treatment with Taxol and the pain was overwhelming. Is there anything anyone has used to help with the pain of Taxol? I'm afraid to have my other treatments. I can't help but wonder if something that makes me so sick is also hurting me. I just moved her 11 months ago, was married in September and have no family close. I feel so alone in this. Thank you for listening.

Comments

  • nancys
    nancys Member Posts: 323
    #2
    Hello slynne, I am sorry that the chemo is so rough for you. I got by so easily with both the A/C and the Taxol. Some of the girls here on our site and also at my treatment center have used GLUTAMINE,a nutritional supplement, and it has helped with the pain from Taxol. Check with your Oncolgist and see if he approves of you using this. I found getting into a hot tub and submerging myself helped with the muscle aches. Mine only lasted about 4 days. I have some arthritic stiffness in my fingers and hands and a little loss of feeling in my toes and I hope that will go away soon. Your tumor was very small and had clean margins, that gives you a great dx... This chemo is poison and it can not be all good for us, but it does kill the cancer cells and it is the best thing they have found, so far, to do that. It is so hard to feel sick, but there is an end to this and you will feel like yourself again,soon. I look back to when I first started treatment and it seems like such a long time ago. I started in September of 2000, so am not far ahead of you. I just started my radiation therapy yesterday. You are not alone and you are part of our family here on this site !! Stay in touch with everyone here. We are all together in this fight aganist cancer and together we stay strong. We discuss our fears (we all have them) and we celebrate our good news together and it helps so much. Love to you, Nancy
  • sueholm
    sueholm Member Posts: 205
    #3
    Hi, I'm afraid I cant help you with the Taxol, but I am wondering where 'here' is, and also what your name is? Since you have the computer do you have yahoo messenger...cos that is a great way to keep in touch with family and friends....every day I am obliged to answer all the messages I get, and that is very good for me...my family is far away too...keep in touch..Susan (age 56)
  • slynne
    slynne Member Posts: 31
    #4
    nancys said:

    Hello slynne, I am sorry that the chemo is so rough for you. I got by so easily with both the A/C and the Taxol. Some of the girls here on our site and also at my treatment center have used GLUTAMINE,a nutritional supplement, and it has helped with the pain from Taxol. Check with your Oncolgist and see if he approves of you using this. I found getting into a hot tub and submerging myself helped with the muscle aches. Mine only lasted about 4 days. I have some arthritic stiffness in my fingers and hands and a little loss of feeling in my toes and I hope that will go away soon. Your tumor was very small and had clean margins, that gives you a great dx... This chemo is poison and it can not be all good for us, but it does kill the cancer cells and it is the best thing they have found, so far, to do that. It is so hard to feel sick, but there is an end to this and you will feel like yourself again,soon. I look back to when I first started treatment and it seems like such a long time ago. I started in September of 2000, so am not far ahead of you. I just started my radiation therapy yesterday. You are not alone and you are part of our family here on this site !! Stay in touch with everyone here. We are all together in this fight aganist cancer and together we stay strong. We discuss our fears (we all have them) and we celebrate our good news together and it helps so much. Love to you, Nancy

    Thank you so much for responding.... I wish I could tell you exactly how much it meant to me. I made an appt. with my oncologist for this Friday. She is a good doctor - but she doesn't really spend a lot of time with me to explain and just talk about what is happening. I have read through so many of the messages here and it has given me a lot of understanding of what I need to ask. The AC treatments were bad and they told me the Taxol would be so EASY compared to them. I wasn't given any perscriptions for pain - just told to use Advil. When I did call in and ask for some medication it took almost 8 hours to get a response - all the while I was in agony. Maybe if I felt she really cared about what I was going through and tried to help it would make a difference, but I don't feel that way. I'm so afraid. Thank you again... I don't mean to ramble on, it just feels so good to vent.... Susan
  • tiger
    tiger Member Posts: 277
    #5
    sueholm said:

    Hi, I'm afraid I cant help you with the Taxol, but I am wondering where 'here' is, and also what your name is? Since you have the computer do you have yahoo messenger...cos that is a great way to keep in touch with family and friends....every day I am obliged to answer all the messages I get, and that is very good for me...my family is far away too...keep in touch..Susan (age 56)

    hi there, Tiger here. I know how you feel about the Taxol, I had eight doses of the a/c, then it was no longer working and had to take Taxol/Herceptin. My first dose of Taxol had me in bed and crying all weekend long, I did not want to bother anyone on the weekend, so I just suffered it out. Martyr or what eh? the second dose was still painful, and lasted about five days, I take Ibuprofen and it eases the pain enough for me to tolerate it. Check with your dr before taking Ibuprofen though, It lowers the blood count, so you have to be careful. My counts have always been high so I have no worries. I have my last(?) Taxol on Tuesday, that will bring me to a grand total of nine. I have been doing treatmenst since January 00. It is a long road and sometimes seeems like it will never end, but there is a llight at the end of the tunnel, and before you know it, you will be done, and your hair will be growing back. We are all here together in the same boat, same fears,but we will all get through this together with each others help and encouragement. No question is too personal,or too silly. Believe me, I am an open book and tend to say what is on my mind,no matter how strange.But that is what keeps me sane, laughter is the BEST medicine there is.Take your giggles where you can, and dont sweat the small stuff.
    Fight The Good Fight!!

    Hugs from tiger
  • leanne_00
    leanne_00 Member Posts: 36
    #6
    Hi There,
    In regurds to your message, I am 38 and was diagnosed with breast cancer in Aug. 2000 and have been on a roller coaster ride ever sence. I had the lump removed and lynph nodes as well. 4 out of the 8 had cancer cells on them. I also had the 4 of Adrienmysin and 4 Texol. The A/C made me very sick by the third and I too wound up in the ER. But I still received the 4th. The Texol sucked for the first week. About 5 days of pain. They told me as well to use the Advil but did not work. They prescribed me a pain killer and it did not work so I pritty much suffered throug them and once the week was up then I had 2 good weeks to recover where the A/c I was just sick. I did not try the gucosamine but some ladys here did and it seemed to help them some. At my worst I would get in a tub of hot water and soak for a bit. Hated to get out. It seems like the pits right now but it will get better for you. Stay posittive.
    I am done now and on my last leg of my journey in radition. I have 9 treatments to go and I will be done. If you want to talk send me a message and I will get back to you. Your not alone. We are all hear for each other. I will keep you in my prayers.
    Many hugs
    leanne_00
  • bdean
    bdean Member Posts: 259
    #7
    sueholm said:

    Hi, I'm afraid I cant help you with the Taxol, but I am wondering where 'here' is, and also what your name is? Since you have the computer do you have yahoo messenger...cos that is a great way to keep in touch with family and friends....every day I am obliged to answer all the messages I get, and that is very good for me...my family is far away too...keep in touch..Susan (age 56)

    TO: Slynn; Hi, after having 6 treatments of Taxol, I can tell you that it was the thigh bones in my legs that ached so badly that I did cry on occasion (hips too, but not as bad). I found that a heating pad on top of legs and hot baths helped alot. I would take up to 3 extra strength Tylenols for pain at bedtime. You just feel worse if you do not get enough rest. Steroids help some people--but not me. Ask your doctor or chemo nurse about the pain, and what to take. The TAxol hits the bone marrow real hard and causes this pain for a few days. I know what you are going through, and my heart and prayers are with you. Just hang in there, it gets better, I promise. God bless you. Brenda in GA.
  • mjdp2
    mjdp2 Member Posts: 133
    #8
    Hi Susan,
    We have gone thru similar experiences but your tumor was smaller than mine (1 cm vs. 3 cm) I was able to complete the 4 A/C but the pain from my first Taxol lasted 10 days. The Tylenol they suggested did not help but fortunately had some left over Vicoden from my lumpectomy. Needless to say, my oncologist did not encourage me to continue the other 3 Taxol. We are in the 5% who suffer from severe pain and neuropathy. It has been over 2 years from my stopping Taxol. I no longer have the intense pain but I do have tingling in hands and feet. Margaret
  • luella
    luella Member Posts: 26
    #9
    Hi Slynne - My name is Luella. I am 41 years old and I was diagnosed with BC in September of 2000. I had a total radical mascectomy with 17 lymph nodes removed (14 of which contained cancer. I had 4 Adriamycin (AC) and am going for my 3rd treatment of Taxol next Tuesday. I was very nauseated with the Adriamycin, so I thought nothing could be worse until I felt the pain from the Taxol. It brought me to tears. I couldn't even sleep. I told my doctor and he gave me darvocet. I am not much for pain pills, because they usually upset my stomach, but I took half a pill everytime I felt the pain begin. I do want to tell you the pain wasn't even close to the pain I experienced the first time. It was so much more bearable. I was so relieved. I had the same feelings about what this must be doing to my body, but I have talked with so many BC survivors who went through the same treatments and have been cancer free for years. Hang in there, you will get through this and please keep us posted as to how you are doing. This is a great place to come to ask questions or just vent when you feel the need. God Bless and take care! Luella
  • lynnie444
    lynnie444 Member Posts: 3
    #10
    Hi slynne. I was diagnosed stage 4 in Aug 98. I had super high dose chemo, and was on neupogen the entire time so my counts could stay up for the heavy doses every 2 wks. The pain with the taxol was awful. My onc. gave me Oxycontin (continuous release oxycodeine) and oxyIR (immediate release). They worked wonders for me. I had the taxol in 24 hr. infusions, so that it would go all over for a longer length of time. It really was tough, and I'm a real baby....really. If I can do it, I really believe anyone can. I believe in my heart it saved my life, as I'm still in remission. I'm also still dealing with the after-effects....numbness, achy muscles/joints, and extreme fagtigue. My life is certainly changed. But I'm here.
    In all honesty, sometimes I wonder if I had it to do over, if I would fight so hard. When I was going through it, I was so afraid of not making it, and now, I'm almost afraid I will make it, but not be able to lead a normal life. I developed Lymphedema in my left arm/hand after masectomy and radiation. That has been a challenge too. I guess all we can give is our best, and the rest is in God's hands. I understand how you feel, I almost gave up treatments too a couple of times. I also had to be hospitalized during treatments for blood and antibiotics. Hang in there, you really CAN do it. Blessings! Lynne, 55 yrs old.
  • 24242
    24242 Member Posts: 1,398 Member
    #11
    It is a hard road that so many have take. I too had just moved and after six months of a new job, new home and new life I too was diagnosed. It is hard getting through the treatments and finding something good coming out of it. I can only tell you what a difference a few years can make to change the way we cope with our lives. Please read my contribution in Expressions Gallery, it says it all.
    You will be close to all our hearts
    24242 Tara
  • blackbandana
    blackbandana Member Posts: 64
    #12
    Hi Slynne, I finished my 4 taxol on March 15 after doing 4 Adriamicin/Cytoxin, so I know exactly how you feel. I couldn't bear the pain either so my doctor put me on Oxyir, I found them to be great. Ask your doctor about them, also hot baths really helped me as well.
  • nancys
    nancys Member Posts: 323
    #13
    slynne said:

    Thank you so much for responding.... I wish I could tell you exactly how much it meant to me. I made an appt. with my oncologist for this Friday. She is a good doctor - but she doesn't really spend a lot of time with me to explain and just talk about what is happening. I have read through so many of the messages here and it has given me a lot of understanding of what I need to ask. The AC treatments were bad and they told me the Taxol would be so EASY compared to them. I wasn't given any perscriptions for pain - just told to use Advil. When I did call in and ask for some medication it took almost 8 hours to get a response - all the while I was in agony. Maybe if I felt she really cared about what I was going through and tried to help it would make a difference, but I don't feel that way. I'm so afraid. Thank you again... I don't mean to ramble on, it just feels so good to vent.... Susan

    Susan, I don't know where you live or how many Oncologists are available to you in your area. But you should not have to wait 8 hours for you Onco to respond to your pain. I would look for a new doctor. We are experiencing a life threatening disease and we need a physician who is compassionate and caring. Talk to your family doctor and maybe he can refer you to someone else. You are a valuable person and you should be treated that way. I think most Onco's in the same area treat their patients with the same drugs and you would just continue with a new doctor. Your doctor should give you encouragement and confidence in your treatment. Don't sellte for less!!!! Love to you, Nancy
  • Unknown
    Unknown
    #14
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