Starting Chemo September 2015; join us!
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In SF - yeah after talking to our MO, who doesn't do scans unless there's a symptom, it'll be at my request to do one. She'll back me either way. It was almost like we talked her into it, but after thinking and contemplating I decided that I'm not having a CT scan. I'm going to ask about ultrasound/MRI to check on the spots on the liver. I spoke to a woman at my MO office that said the ct scans are the gold standard, so they might not go for the ultrasound or MRI. We'll see. I can't fathom having another 200 x-ray induced radiation scan to my already vulnerable body. They biopsied one spot and it was clean, chances are they both were.
Tessu/cajun, I had my cancerversary of my diagnosis when I was at the retreat. I told one woman when we did a 1 on 1 exercise. I wanted to tell the group it was my cancerversary but I was too chicken too. The woman I met with told them for me. I found it more difficult to say it out loud in front of people (usually I can say anything LOL), but I'm glad she did. I felt very relieved when others felt the same way about their cancerversary and the emotional toll it has and the PTSD that we all might experience. Sum it up there was a group hug after that and I was happily blamed for making a few gal's mascara run.
I heard about the "shrinkage/dryness" of our lady parts during chemo and i found fractioned coconut oil as a nice natural addition (hope not TMI). As for the mental component, yes i def do not feel in the mood very much lately. I think the effects of this ordeal is distracting me in that dept. Work in progress. That laser procedure sounds intimidating but well worth it I'm sure
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I hear you El Tigre I need to work on getting my sexy back....I just dont have any desire. I have started to exercise again Im hoping that will help my energy levels back up. Does anyone else feel constantly tired....
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I had my anniversary July 1. Finished 6 mo chemo then did breast conservation lumpectomy right side and 6 weeks max radiation. So I have been very tired. Finished radiation on April 25. Just started to get more energy I mean after work to bed at 6 pm. Everyone thinks I do not like them or do not want to talk just too tired. Weekends I drive to the country 3-4 hours . Tried red bull or 5 hour energy just to be more awake on weekends. It helps. I am sure it is not healthy but good clean living no smoking not drinking gambling or motorcycle riding got me here. So I am thinking about trying some vices since sex has been out same story as above pain and dryness my boyfriend of 25 years thinks I do not love him. He is extra grumpy.
I am triple negative. Just started xeloda 2 weeks ago so now I am nauseous again lovely
Anybody taking xeloda
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today was my cancerversary, luckily kept quite busy all morning then spent a long afternoon playing "local tourist" at a Russian Orthodox monastery. Especially enjoyed the nature photo exhibition and the concert by four monks with heavenly voices singing Russian hymns. I lit a prayer candle to ask for protection (health and happiness) for my two sons, especially if I'm not around as long as I'd like to be. Brought a tear to my eyes, even though I haven't been religious in decades. "Cancerversary" --- I hardly recognize the person I've evolved into over the past year; outer appearance, although drastically different now, being only a minor part of this change..
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Hi my September sisters. Just checking in with bad news. One year after finding the lump in my breast, with just 3 more herceptin infusions to go, I was told my cancer has spread to my L1 and L2 areas in my spine. All of my docs were so sure it wasn't cancer causing my back pain since I had a complete response to chemo. I was told I was NED with maybe a 7% chance of it coming back. I had asked my whole medical team about the pain I was having in my back, and only my surgeon decided to check it out. My bone scan was negative, but the MRI showed two lesions about 7mm each. I have never seen my surgeon at a loss for words before. He spoke with my MO and has ordered a PET scan. I guess now they want to make sure it isn't anywhere else. Even my RO is stumped. A pathologically complete response and now this. I am devastated. Thank you all for all the support you have shown over the past year. I pray that each of you has a better outcome than me.
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Oh fidget, my heart goes out to you! What a nightmare! Are your docs absolutely sure it's mets without a tissue sample? (Or is that what the PET scan is for?) I'm hoping for any other diagnosis than bc for those spots. ((((hugs)))
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No! It makes me so angry that cancer wants to progress on one of our own.😡 No, no, no! I'm just so sorry for this news, fidget. I will say a special prayer for peace and healing for you tonight. I am hoping they can get and keep you stable on a bisphosphenate for a LONG time.
Not on Xeloda, but on its cousin, Prolia. So far, no issues.
I had my vitamin D level checked and it is too high (>96). Time to back off of the supplements.
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Thank you everyone. Yes, I can use all the prayers I can get. I'm so depressed. I really hope I'll feel better once a treatment plan is in place like I did the first time around. Just waiting on the date for a PET scan. They want to make sure it isn't anywhere else. At least the first go round I was so happy that I was one of the "lucky" ones who Herceptin worked for. That's what has my medical team baffled. But I guess it isn't the first time cancer outsmarted them. Just last week my MO said I was good. My tumor markers were normal also. I just feel sick.
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Ugh.:( It makes no sense. Cancer doesn't care...whether you are old or young, thin or obese, have young kids or are widowed, ran a marathon or ate a diet of sugar and fried food. It just takes and takes and takes and takes. I feel so heartbroken for you. May God comfort you in a way that human words cannot. Big hugs. Hang in there, sister...Liz
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oh fidget that just sucks. I am so upset reading your post. As canjun said it hurts worse when it is one of our own. Scary to think that up you told your docs about back pain and they said your bloods were ok before. Thankfully your surgeon took your pain more seriously. I hope your pet scan shows minimal spread. Huge hugs and arms of strength around you.
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fidget, I don't know if this helps, but a woman in my local support group got widespread bone mets shortly after completing her course of Herceptin. She started Herceptin again, this time with Perjeta, over two years ago, and her mets shrank. She feels fine, is very active, traveling and such, limited only by having to get the infusions every three weeks. If those spots in your spine do turn out to be mets (I hope NOT!) then I'm praying they'll stop dead in their tracks like my friend's. Praying for you (((hugs)))
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Fidget--Dang!!! Crappy news!! Sending lots of love and prayers to you. You will get a good plan in place and stop those rotten cells in their tracks!! I have a friend in a similar situation. Hers is stable and spots shrunk with treatment. She's had great follow up news. Hoping same for you. Healing wishes to you.0 -
Thank you so much ladies for the encouragement. I'm in such a dark place right now and you give me hope and the will to keep on fighting. Still waiting on the appointment for the PET scan so I can meet with the MO. I am just so puzzled as to how I could of had a PCR in January and now this so soon while still on Herceptin. I guess cancer has no rules. I just want to get the ball rolling. I'll update as soon as I can. Thanks again.
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So sorry Fidget
You are in my prayers. That really irks me when they don't investigate further any pain or discomfort we have. I am hoping they are wrong. I had a liver scare before my BMX, they found 2 spots on my liver and all 4 docs were sure ti was cancer. After a biopsy of 1 of the 2 spots it came back not cancer. Docs are not always right I pray they are wrong.0 -
fidget - I'm really sorry to hear about the scan. Hopefully the PETwill point to a benign cause. If the bone scan was negative, it seems that may still be a possibility.
I have been struggling with some (likely) bad news. I also developed lower back pain and have two CT spots on lumbar vertebrae - between 5 and 6 mm. My MO is choosing to view them as benign since they are stable from when I was diagnosed and did not show up on the bone scan at that point. The spots are too small for biopsy. I considered requesting a PET but decided to wait a few months to see if they change a little further post - chemo. Statistically, mets in the spine is a higher probability than the benign alternative.
I also had an ominous result on a tumor marker blood test - the value has doubled in the past year when it should be going down after menopause. The most likely explanations are metastatic breast cancer or ovarian cancer (BRCA 2). My instincts tell me it's not ovarian cancer, and I will know either way after my ooph / hyst in a few weeks. What I am terrified of is mets from the breast cancer, but I am hoping it's just some pre-menopausal variability hanging around. Not likely, but possible. So we just keep hoping...
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inSF - I'm praying that all goes well for you. The waiting and wondering is pure torture.
I think I'm more distraught than ever today. I went for my herceptin infusion and was filling in my chemo nurse so she could schedule an appointment with my MO who is on vacation this week. She knew about the CT checking my liver, but not the bone stuff. At first, she was saying that she thought it could be something else since the other two scans saw nothing. But when she looked up my MRI results on the computer, her demeanor changed instantly. She almost looked as if she wanted to cry. She had also just called over to radiology and they told her no herceptin today because it may interfere with the PET scan tomorrow. So as she handed me my new schedule she said "here's this, and what ever it is we'll figure it out and change course if we have to". The look on her face after she saw the report just terrified me because in the year that I have been going there, I have seen nothing upset her. I cried all the way home.
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Praying for you both, fidget and inSF
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prayers for you, fidget and SF. Nobody should be dealing with these issues so soon after trx (or at all, actually).
Sf, I have tumor markers done too, but they are notoriously unreliable. I'm sending you mutant love from one coast to the next. If it's not one thing with brca2, it's another.
Fidget, I'm praying hard tonight! Can you get some anxiety meds from your MO? Or some ambien? A good night's sleep is greatly needed in this situation. Please keep us posted. We've all been together for almost a year now, we stand with you!!! Xo
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INSF just so sorry to have had such an emotional day and truly just so sad for what you are going through. I am praying for you and sending good karma in the wind.
Fidget: thinking about you and sending all good thoughts your way.
Breast Cancer brings out a toughness in spirit that we never dreamed we had. I pray for you strength for both of you.
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I forgot all about my cancerversary... Too busy obsessing over whether I have latent cancer cells floating around 😁.... Totally separate question for the sept chemo group: anyone's hair come in curly... Mine was straight before chemo... I am just glad to have some hair... But I am surprised at the texture and color... I attribute the dryness to lack of estrogen.
Prayers for you fidget
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I hate my hair. It is curly and kinky and dry and thick. It refuses to be tamed. And so much grey! I had almost no grey prior.
I did it. I registered for the 11/6 marathon. Running is hard, I am so beat up on the Afinitor and Arimidex, but it makes me feel normal. And hot. 85 degrees at 9 p.m. God willing, I am going to do this. I AM.
Love to all you ladies.
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you will do great in the marathon... !!!!you have all of us in your pocket running with you
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Thanks jojo! Love! Fidget and inSF, I'm going to write your usernames on my shirt when I run and post a pic from the race. I run for all my sisters that can't do so. Cancer brought its "A" game last year. This year, it's my turn.
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GO, CAJUN!!!! Hope you have a fantastic time at your marathon!
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Run Cajun run☺☺☺good for you Im really proud of you. Fidget and InSF you have been in my prayers and will stay there.
My hair came in very curly and grey and dry. I have coloured it and it seems to be getting straighter Im so happy to have hair...its not my old hair but nothing is the same and in the big scheme of things its not a biggie Ive learnt to accept it. Love you girls xxx
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cajun-you are the sweetest!!
Well everyone, your prayers have meant so much to me. I think God may have answered. I had the PET scan on Wednesday. Even though my surgeon is on vacation this week, he called to tell me that nothing was seen on the PET. Nothing, nada, zilch, zero. He said he is so puzzled by the MRI. So CT, Bone, and Pet all saw nothing but old age bones (I'm 52), and the MRI seem pretty definitive that it showed mets. He is choosing to go with not cancer, but he said it is up to my MO who I see on Thursday when he gets back from his vacation. Something is there according to the MRI, but we just don't know what. The MRI said possible large hemangiomas on the T12, which I guess can mimic cancer, and metastatic lesions on L1 and L2. Degenerative disc on L5 S1. So I guess the PET was good news, but I still feel in limbo.
I could not get through this stress without all of you. I realized the past couple of weeks will be our future. So many of us will always worry with every ache and pain, with every future scan. It has been so up and down for me with all these scans. Four scans in a matter of weeks. Some days I have just felt sick to my stomach with worry. You my sisters are my constant. You are the only ones who truly understand this life. I am so grateful to have found this site and to have landed in the September group. I love you all.
inSF--never give up hope. Maybe you will be my enigma partner. We will live long lives keeping the docs on their toes. That is my hope.
Hugs and prayers to all! I will let you know what my MO says next week.
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Best news all day, fidget! I'm so happy for you!!!!
Yes hemangiomas can look JUST LIKE METS on MRI --- at the very start, the surgeons delayed my mastectomy because of the MRI "definite met" in my liver that thank heaven turned out to be hemangioma on the follow-up blood-vessel MRI.
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I hate hate hate getting so scared over every new ache, pain, and lump that pops up. If anybody knows how to shut that off, please please share. Even my therapist is getting frustrated with me. She very sensibly reminds me that it would be a shame if/when I finally do get mets, to look back on these days now and feel stupid for how much time and energy I've wasted fearing a future I cannot control, instead of gathering the joy of being alive in this present moment. Yes, I get it, I believe it, I meditate and breathe and get out in Nature and do "all the right stuff", but the thoughts and fears are often still so overwhelming, it takes hours to claw my way back up out of that black hole. Cancer sucks. It's so hard to keep thoughts of cancer out of my mind, when the gray chemo curls in the mirror, the compression sleeve and glove, the night wraps, the prosthesis bra, and the lymph-massage and exercises I have to do all the time keep shoving it in my face that I HAVE CANCER
When I went in yesterday for my Herceptin, I begged the nurses if the senior oncologist I have to see next month for the one-year check up could be anyone else besides the woman I've had from the start, because she always uses the phrase "WHEN you get your mets", never "IF", which is so unfair and so scary. What ever happened to doctors giving patients hope?(sorry. And thank you for being here.This is the only place I can let this out, This group is my lifeline.)
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Ugh. Tessu, I know what you mean. I also wonder if I wasted the last 3 weeks crying for nothing. The whole episode made me physically sick. I'm still being cautious though. What are the other two things on my spine? Maybe I'll never know. As for the doc, I get it. There are two in the practice where I go. One I call Dr. Doom. He's the first one I met with. NIce guy, but always makes me feel like I should update my bucket list. One of my chemo nurses noticed he upsets me, so she started scheduling me with the other MO whom I love. My good MO now tells me when he is on vacation so I can schedule around it to avoid Dr. Doom. He knows how I feel about him. I still prefer my surgeon above everyone else.
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IFidget Im so relieved for you. We still need to pray for each other. This is our lives now every ache every scan is scary.
My mother went through this when she was 35 she is still here and had a couple of reoccurences but got through it.
She said to me that she used to worry like us with every ache and pain but as time passes she worried less and less. Her aches now are associated with getting old a problem she didnt think she would have when she was 35.
Anyway Fidget reading your news was the best way to start my day. Its going to be hard to stop smiling.
Tessu I think you need to tell the women that says when instead of if to fuck off you dont need negative energy in your life. Despite all your worries and what youre dealing with you have been a light in my life.
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