Starting Chemo in Nov. 2011...anyone else?
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Good morning all,
beth, I can imagine being away form the babies - visit as often as you can. And yes this has been a great place to connect!
Phyllis - yes hoping it is bubble gum. Certainly swalloed enough of it and this is what my mother said would happen
I did have an adrenal biopsy yesterday - after much blood work and doc appts to determine if it was safe to do. The actual biopsy was easy, the prep before and after seemed to take forever. Results sometime next week. Given all the docs have said to me I will be very surprized if it is not a spead of IBC or a new cancer. But not really worried Not sure why. My onc has been very calming, after an appt with an endocrinologist who had me and a friend in tears. I am good with direct - but he was a bit heavy handed. My onc says we aren't going there until we need to go, doesn't want me to go there and if we need to there are many options.
So I am continuing to move forward - getting my house ready to sell as part of the divorce, I am soooo ready to be out of here and going ahead with the divorce. Can't keep putting my life on hold cuz of this nasty cancer stuff. I can live with cancer, if that is what I need to do - people do. Not my first option - but don't like the other option.
And could I just say my soon to be ex introduced his girlfriend to our daughter (15) last weekend, no heads up to her or me prior . And really with all this going on. But saw pictures and she has hard miles on her, so I had to laugh. I am not the cover of glamour, but really My daughter says she waits on him hand and foot so sure he is happy
have a beautiful summer weekend
Be well
Nel
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Nel-I am so sorry that you are having to go through all this waiting and worrying again, and I am very thankful that you have an oncologist who is helping you stay calm throughout the process. We can certainly understand any panic that you may feel with any type of new test results or diagnoses. It is a shame that your endocrynologist has no people skills. I wish you the very best possible outcome with your adrenal gland. Please do keep us posted on your news and updates. Now, as for the comment you made at the end of your last posting about your husband's girlfriend having "hard miles" on her, I laughed so hard when I read it. Really, though, you seem to be in a good place with the divorce. I know it was awkward and hurtful to have the girlfriend presented to your daughter, but I think you are smart not to be focusing on it too much. You don't need any of that right now. I know you postponed the divorce because of your cancer treatments 2 years ago, but it doesn't sound like your husband has been much support throughout that time anyway. I say good riddance, and I admire how you are moving ahead.
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A week ago my onc called and my IBC has spread to my adrenal gland, I am now stage 4.This was caught due to my first CT scan following the end of treatment. He seems to think it would have been a year or more befroe I had any actual symptoms. Processing, processing processing. I have met with him, along with memebers of my posse and then spent time again with him on the phone. I have a plan, have opted out of a clinical trial as I can have the same treatment with fewer appointments. Hercetin every 3 weeks and tykerb daily. Minimal SE's, so I can fly under the radar with neighbors, people I work with, my kids. I won't be saying anything to my kids (19 and 15). There is nothing for themto know until there is someting from them to know. Right now all they need to know is that the docs want me to have a few more treatments to make sure everything is OK.
So I alternate, terrified, crying and OK. My onc continues to be very calming, tells me not to begin giving anything away just yet and that he fully expects to be talking to me a year from now with me feeling as well as I do now.
For everyone's support, thank you.
Be well
Nel
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Good morning everyone!
Nel, I'm so sorry you got this news. I was really hoping for the bubble gum diagnosis. I'm glad you have a good support system. Also sorry that your husband is a butthead even though he's been that for a long time! Please come here to vent anytime and also please keep us updated.
Beth, are you doing better now? I hope you have been able to find a good support group near your new home.
GrandmaV - I hope you are still feeling good!
bahamamom - I'm so glad you are doing well!
My update: Evil Ixempra and Zelda SUCK! I have one more treatment - next Monday. They have been kicking my ass but that is to be expected from evil things. I have been almost pain free this cycle thanks to an increase in my fentanyl dose. I have even had some energy the last few days. Yippee! My MO up here offered to reduce the Ixempra dose due to low counts and pain. Since my low counts have not resulted in any infection through the whole treatment, she said the choice was mine. Since infection risk is not a safety issue, I chose full dose and manage the pain. Take that, Evil Ix!! I ain't askeert of you.
I am on LTD but will be terminated from my job on September 1. How nice is that?? My employer's leave dept called yesterday and went over some specifics of my benefits. At least now I will be able to plan how I am going to handle COBRA payments and other things until I am well enough that I can find another job.
I go back to MD Anderson in Houston in September and see the surgeon for a follow up, my MO for a follow up and my RO to plan my new rads for the level 3 nodes. At that time I will have the 3 month CT scans to look for progression.
I'm off to sit on the porch and see if I can scare any of the neighborhood kids with my bald head! Hahah,not really. It's just a nice day.
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Hello again Everyone! It sounds like we are all having our rounds of ups and downs.
Nel--I am so sorry to hear this. I really don't know what to say except come here anytime you need to say something. We have been through a lot together.
Phyllis--Sorry to hear about your job.Congrats on your last treatment and thanks for the laughter. My hair is growing out and is a weird sort of way, I miss my scarves. My hair is at that length that won't stay in a headband, barrett or even where I brush it! I was not blessed with curly hair. I got the same straight hair that I always had. I can't use hair spray because I get to sweating so much that my hair falls flat.
I have resisted taking antidepressants but I may need to give in and take some. I cannot get my act together. I am not working right now and my mind cannot focus on anything. There are days when I sit and cry and others when I am on top of the world. I took Zoloft for about 5 years and it was many years ago. I tried to take Paxil before I was diagnosed the 2nd time but I was not functional on it. If any of you take something, what do you take? I need something to help me out. I am exercising more and it helps. I did Zumba Gold and Hydro Fitness on Monday. I am worn out and haven't done anything since. Maybe tomorrow I will swim. Can't sit still forever.
I also want to look for work but I am afraid of beginning the search. It is so scary to think about starting over. My anxieties are working overtime!
I hope each of us can see some sunshine at least once each day. Be blessed My Friends!
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Beth-I don't take any medications, but I can tell you something that helps for me. I have been reading books with titles like, After Breast Cancer. Today my husband and I had our last massages at the cancer resource center, and while I was waiting for him I read one. The author was a woman who had had bc 2x's and she was married to a medical oncologist, so parts of the book were written by each of them.
Anyway it was about the way that having the bc diagnosis forever changed you, who you are, and your perceptions of many things and the ongoing challenges we face. It really helps me to read about others who are feeling the same as me. That is also why I think this discussion board has been so good for me as well. I am not "over" a bc diagnosis, even though things are going very well. i need to keep talking about it. But as the book says our friends and loved ones just expect us to celebrate our treatment being done, we are well, and then go back to our before bc lives. It is reassuring to me to read true stories and real advice like that.0 -
Nel, I'm so sorry. You've been through so much treatment already, I hate it that you have to have more. Are both adrenal glands involved? I hope tykerb is effective and few SE's. I just wish I could help somehow. Please keep us posted.
Phyllis, I know your chemo has been very hard on you, but you never wavered in your determination to keep going. Congratulations on your up-coming final treatment. Your employer is heartless.
Beth, I've been on Amitriptyline HCL 50 mgs once a day at bed time since my final chemo. It helps with depression and anxiety and can help with tinnitus and sleep problems. I really thought I would be off of it by now, but my new pcp thinks I should stay with it since I seem to be doing so well. Just like any medicine it has side effects and the one I've had some trouble with is dreams that seem so real that when I wake up, I'm still reacting to the dream. But I haven't done that in several months, so I think my brain adjusted to it. Maybe some counseling would help. I probably should be in counseling, but just haven't done that yet.
I had my mammogram a couple of days ago and all was clear. I was relieved to hear that.
bahamamom, I know what you mean about not being "over" our diagnosis. I just try to play the part that's expected and not talk about it except to one dear friend.
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Hello all, haven't been on for a while, but I need my sisters right now. I just had a PET/CT scan done yesterday and a few hours later I got a call from my breast surgeon who gave me some devastating news. I might have lung cancer with possible cancer elsewhere including my bones or I could have pneumonia, if I could choose, I'd like the 2nd choice please.
I had a very stressful situation during radiation and most recently in July, yes last month. Been taking better care of myself I thought, but I think the stress didn't help. Will tell u about that later too long. I lost a lot of weight, been exercising and eating better, I thought, but I really think stress is a big factor for me for both breast cancer and this one. Still crossing my fingers. Have to get a chest x-ray, possible biopsy to know for sure, so please pray for me my sisters! I don't need this right now and I don't want my young daughters 10&7yrs old to go through this again! So angry, can't believe this is happening to me again. Needed to rant and rave, thanks for listening!0 -
I apologize because I haven't kept in touch with all of you like I said I would. For those of you who are having new issues, my heart is sad for you and you are definitely in my prayers. I just HATE cancer! I had an MRI and it was negative, thank God, and I try not to worry, but it isn't easy. I know 2 people who have become stage 4 and it really brings everthing terrifying back to me.To say our lives have been altered would be a gigantic understatement.
I know that a lot of you have regular blood tests, but the MO doesn't believe in them on a regular basis. I saw a second MO and she said the same thing and also added that the results don't seem to really reflect what is going on. They both told me that having the mammogram and an MRI (alternating every 6 months) is something I must keep up on. I was told that if I notice anything or just have a "feeling" that something isn't right means I should let them know and they will order all the necessary tests. Their opinions were that finding a spread of the cancer sooner rather than later doesn't alter the outcome.
I am wondering if those of you who have follow-up PET scans ask for them or is it just something that is routine for you? My husband asked my MO if a person can be cured from this disease. He answered that it could be cured, but when my husband asked how to tell when you are cured, the doctor said, "When the patient dies from another disease." My husband said that was very depressing and that he didn't know how I live with that knowledge. I told him I didn't have a choice and that I am trying to live my life without that in my head every single day. However, there isn't a day that goes by that I don't have that thought at least once or twice.
I am hoping to be better at checking in. I have missed knowing what is going on with all of you. I had to take a break because I was becoming obsessed with reading topics that fueled my fears. I hope I have things in perspective again. Take care and hugs to all! Linda
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Julie, That's just awful. I hope you don't have to wait too long for further testing. You and your daughters have been through too much already. Ordinarily I wouldn't wish pneumonia on anyone, but in this situation, yes, please be pneumonia. I know what you mean about stress. It does take a toll. Seems like this stuff never ends.
Linda, we've missed you, too, but so glad you come back from time to time to let us know how you are. I was told the same thing as you. No tests unless I have symptoms. I also don't have blood tests regularly. I had worked myself into a frenzy worrying about my recent mammogram, but it turned out everything is fine and I was glad to hear that, but it didn't allay my fears. I'm still feeling well, but worried about every ache and pain. Aches and pains that before cancer I would have just taken some pain reliever and went on. Now, I take pain reliever and worry.
I want to try to adopt Phyllis's attitude. She is such an inspiration in the way she is dealing with her recurrence and awful treatments. She has a great since of humor. Thank you Phyllis.
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Linda - So nice to hear from you. I know what you mean about having to get away from reading too much that scares you, but I do like to see what everyone's news is as we continue this journey. My doctor doesn't do any tests other than bone density every 3 years (because of the arimidex) and blood tests (just finger prick every other time and full panel on the other visits). I am not happy with that, but it doesn't seem like we have a choice to get more tests run.
Grandma - Happy news for you! So glad your mammogram was clear. Mine is September 30th, so I am already looking forward to and dreading it at the same time.
Phyllis - I am so glad that you are almost finished with your last chemo. Grandma is right. You do have a remarkable spirit, and I am sure that it has served you well, especially during this recurrence. Hopefully, when you find a new job, it will be with a more humane employer. It should be illegal to terminate someone because they are sick.
Julie - I am so hopeful for you that it is pneumonia. I wish they would have ruled that out before they used the word "cancer" with you again.
Nel - Let us know when you start your new chemo meds. We will surely be wishing minimum side effects and a very quick recovery time for you.
I also wanted to let everyone know that my husband's and my big trip to Hawaii is getting close now, September 9th. I am so looking forward to it! I have also lost 25 pounds now, and my hair is finally looking much better. Beth, it is straight like yours, but I got it trimmed up in places yesterday, and it does look very nice.
I hope everyone has a great healing weekend!
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Bad news just became worse, I'm hospitalized right now. It is lung cancer with mets to my brain and other places. I just had blood test done in June 2013 at MO, guess they weren't right. My new MO sent me to ER to get a head MRI, which confirmed mets. Guess it really sucks to be me right now. Ladies u must demand PET/CT scans fight for your right to never go through this again! If u have any changes that don't add up, mine were a cough for over a month, which antibiotics didn't cure, new lumps not in breasts, 1. Left neck, 2. Left shoulder, 3. On back of head, mind u I had right breast cancer, not even same side!
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Julie, I'm just heart-broken for you and for your daughters. It just makes me so angry that in this day and age the medical community can't stop this horrible disease. Please don't blame yourself for this. It's something that happens that no one seems to understand. Are you in the hospital for treatment? Or more testing? I feel that the doctors just don't seem to prepare us enough for what to watch for. We all care about you very much and wish we could help. And thank you for the words of wisdom to be vigilant about new symptoms. Its so sweet of you to think of us when you're going through so much.
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I'm in the hospital cause I have a neck tumor biopsy tomorrow afternoon after which I'm finally going home. My new Onc wants me to start radiation first thing Mon, so here I go again. Finally going to find out where this damn thing started from, what cancer I have and stage, but onc says definitely mets.
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Naan
So sorry to hear about your news. I will keep you in my prayers.
Susan
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Susan, it's good to see you.
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Julie, so sorry for this awful news! Please know that we are thinking of you and praying for you and your family.
Phyllis
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GrandmaV:
Thank you. I always follow this thread even though I don't post often. This thread kept me going during chemo and gave me the strength to go through it all. You are all sisters forever....
Susan
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Susan, I feel the same way. Please let us know how you are.
Phyllis, Is your final chemo still tomorrow? I hope it's not as hard on you as it has been.
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I found out today from my surgeon, I'm stage 4, don't know what type of cancer yet but due to mets I know the stage. Had biopsy, went well took whole thing out, was a size of a pea from my neck, felt like chicken bone cartilage, hard, white. Tomorrow, Monday morning starting radiation in brain first, then after that is under control, will hit other areas. Wish me luck and please pray for me.
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Julie, You are in my prayers. I'll be thinking of you tomorrow and praying that the radiation does it's job and is not hard on you.
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Julie-we will be praying for you and your family. I am hoping the radiation won't be too hard on you. Just take one step at a time and focus on keeping your strength up. We are here when you need us.
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Julie,
Many thoughts and prayers. It so sucks to be satge 4, I was just dx a week or so ago. I begin treatment this Friday. As I discovered blood work seems to tell the docs nothing. MIne a month after treatemtn was finished came back normal, including all tumor markers. It was the CT Scan and then PET Scan that caught the spread.
Be well with as few SE's as possible.
Nel
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Julie and Nel---Hugs to both of you and prayers. I cannot imagine how you feel. Please feel free to visit here whenever you need to "let it out!" We are here for each other.
I see my onc every 6 months. I have a nodule on my thryoid that my PCP is watching with ultrasound. I had bilateral mastectomy so no mammogram and how will I know? My oncotype is 54 so high rate of recurrence. I am in a new state with new doctors. I wish I could go back to my regular doctors who know me and have been with me from the beginning.
I am going to meet with a new friend tomorrow to talk. She has grandchildren in another state like I do and we are going to talk about that issue. My depression is because my daughter who has the twins is not talking to me. I don't know what I did but I have been shut out of her and the babiez lives. She doesn't take my calls, texts or messages. I have been crying for about a week. I need to get over it. The stress is not good for me. Why do some of us have family members who make it so hard for us?
Be blessed my friends. I am going to keep exercising and trying to dance through my tears!
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Beth, I am so sorry your daughter is doing that. I know how much those babiez mean to you. Your avatar says it all. You look so happy holding them. Can someone else in the family, husband, other kids, intercede for you? I know that's a sticky wicket, as they say, because you don't want other family members taking sides. I've been through some of that myself with my sisters. Does your new onco know about the nodule on your thyroid? Hopefully your pcp sends updates to him or her. I know I've had a lot of trouble getting all the doctors coordinated. My new pcp is helping with that. Now all of them that need to get updates, get the updates and she gives me reports as well. I just love that. I see her on the 28th and have some concerns to discuss and will get a pap test that day. I'm going to request an x-ray for my back. I've had some back issues since a herniated disc in 2001, so it's nothing new, but I'm just concerned about it. I want to go to a chiropractor, but insurance won't pay for them or the xray they want. If my pcp orders the xray, then insurance will cover it. It's all just a mired maze dealing with insurance.
Julie, I hope everything went well this morning.
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Julie & Nel ~ Words can't express how sad I feel that for both of you. I have been praying for all of my "November 2011" friends and will continue. I guess now I will have to believe my MO when he says that blood tests really don't give info that is necessarily correct. It is so frustrating and scary to not have any definitive way to let us know how we are doing and it frustrates me that we aren't able to have PET scans regularly. All of that aside, I will pray that your new treatments keep things in check and that you don't have bad side effects. I can't even imagine how you must feel and how you are coping with all of this. I hope that you are able to take it one day at a time and know that all of our love is with you both. Linda
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Beth ~ I am praying that your daughter's heart will change and she will realize how important it is for you to be with the babies and how important it is for the babies to have you in their lives. As my BFF says, "Too bad we can't put an "old" head on young shoulders! Another thing I truly believe...we all have some issues with family that no matter how hard we try, we can't figure out what went wrong. Some people just won't admit it. I hope your new friend is a wonderful new part of your life. Hugs...Linda
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GrandmaV, yes I had my last Evil Ixempra infusion today. Thank heavens! I still have 2 weeks of Zelda. I took smoothies and lattes to all the chemo nurses to celebrate. I also wore my 'lips' mask to make them laugh. We had a little fun!
Nel and Julie, I wish you both the all strength you will need for yourselves and your families on this crappy journey. The rest of us also need your special kind of wisdom if and when you might share with us.
Linny and sue, so glad you stopped in!
Beth, I'm very sad for you and the situation with your daughter. I hope it is resolved soon!
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Phyllis - That's great! No more evil lx. I hope you never have to go through that again. You mentioned Md Anderson and radiation starting in September? It's too bad you can't have a little more of a break.
Linda, it so good to see you. Please come back often.
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Phyllis ~ Glad to hear you are finished with the "evil" drug! Those milestones make us feel better, don't they? If you do have to have the radiation that GrandmaV referred to I hope it goes quickly and with little side effects for you. We have all been on quite an unwanted journey, but it's great to have people who understand (our group) when we share! Take care of y-o-u!
Thanks, GrandmaV, I am going to try and check in regularly with my November 2011 sisters!
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