Class of 2009 - Sisters in the same time frame
Comments
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M360 (hugs) hang in there sweet lady! you have so much to fight for... yourself and your beautiful daughters. When life hands you lemons make lemonade. I will be praying for you and waiting to hear from you... Please keep us informed on how you are doing.
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M360 - So sorry to hear that you are facing this all again. BIG HUGS to you and keep swinging you can fight this one too!
I'm glad to read that most of you are still doing well and passed your 3rd cancer-versary without incident.
M360 - you asked if anyone else was facing a recurrence. I don't know if I am or not I'm still in the "testing" stage.
I've been doing the rounds of tests and going for monthly blood work. So far my Tumour Markers have gone up, up (past normal), down (still past normal), up (past normal and highest it's been) and now down to normal again.
Since the fall I've had a Bone Scan, C/T scan, found some suspicious lesions on my right femur/hip (breast cancer was only on left side), hip xray, PET scan, and now waiting for a hip MRI.
The femur/hip lesions were found on the Bone Scan and all the experts say it's benign but further testing is hapening to make sure that's the case and also to provide some baselines for future testing.
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Marie, big hugs for you too.
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M360 my thoughts and prayers are with you, you are a strong womanand we will all stay with you. I wasvery fortunate andmy biopsy's came back B9, may have to stay on Tamox longer than 5 years but I can handle that.
Marie hugs to you, hope all remains B9.
I have had pain on and off on the R where I had the lumpectomy, I was told it should go away but now am told it is nerve damage and is proabably permanent, nothing I can't live with but wondered if anyone else has the same. I also have permanent radiation damage and get flair ups but again, new normal. It is good to hear from several of you again!
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Marie sending you good thoughts and prayers. Hope life treats you well. God be with you. And sometimes tumor markers go up when we are sick or have inflamation. It is not always necessarily indicative of cancer. especially if they are returning back to within a normal range.
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M360 you are in my thoughts.
Marie - praying all is benign with you.
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M360 you are in my thoughts and prayers.
I haven't made three years quite yet. I go by my surgery date which isn't until the end of March. I have a chest scan every 6 months due to a very small spot that showed up 14 months ago. All of my scans are due again on the 25th. I still get very nervous waiting.
Hope all are doing will.
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I finally asked for a Symptoms Specialist and they want me to see a Decision Planner. In just two weeks I now have 5 tumors in my left lung with two pleural based and one of those projecting into the epicardial. What shocked me even more is that it's entered my bones, first in the vertebrae from T1 to T!l, then in the femur and right hip including the medullary canal. Trying to find out what SE all the medications they want me to take have and will I keep QOL? Looking to the boards here many women are taking Faslodex and have little to no side effects and this was mentioned as one so I'm on board for such. But CMF 12 rounds worries me! I did well on Cytoxan last time but the CMF combination is old school and memory lost doesn't go away it stays even 10years after women have stopped taking it. So I need help with decisions. I will be fighting breast cancer the rest of my life I'm told but they say there are many women living with such and in constant treatment then no recurrence for six months or a year and then again the whole regiment. So confused!
The good news is that my baby turned 18 on Valentines Day and did we celebrate! I wanted a day without cancer, so we hit the city (San Francisco) doing all her favorite things and then a crawl (which I was not able to eat any of) but it was full of laughter, love and memories that will last a life time. Along with other gifts I got her a new camera and we took such wonderful pictures so that the day will never be forgotten. This was always my goal with cancer that being a single mom that I was there for each one to the age of 18. She is willing to and has signed legal papers that she will always take care of her Autistic sister, which what more can a mother ask. I didn't want her to do so, but this is her decision. They are both so close and I know that if I loose my battle that the two of them will go on stronger and with each other.
Thank you ladies for allowing me to come on and vent or just post to get things off my chest. I'm feeling angry and anxious these days, having to make some really big decisions and I want to make the right ones. That is why for the first time I've asked for help from Cancer Specialist and Programs on helping me to make such. Never knew that there was a Symptom Specialist and a Decision Specialist that see you before each appointment or treatment and make sure that your wishes are being carried out or that any thing the doctors decided is discussed with them after each visit and they intervene on your behave if such will not work because of SE, other health complications, etc. It's just seems that most of my days evolve around doctors and the cancer center and infusions. I'm hoping to plant my plants this weekend to just have another day of anything but dealing with cancer.
Love and Laughter to you all.
M
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M360-Sweetie, You come here anytime. I'm glad Valentine's was special for you. I'm a single mom too, but my DD (who is 18.5) was busy with college & then working that evening+hanging with the boyfriend in the few available moments, so I barely saw her. She posted nice platitudes on FB about me tho
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Ladies I was having one of those sleepless night and I did a word ladder game on this site and saw pj12 is Stage IV also. Need to go back and read previous posts, sent her a PM. How many of us 2009 sisters have had a recurrence?
Love to know how everyone is doing. Hope that pj is doing well and everything is under control?
Thinking of you pj
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M360-I think that Stage IV post was JoyE1947, not pj, but if you get clarification could you let us know?
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I'm wondering the same thing Eph3 12! There was a problem with the site and PJ actually commented that all the icons disappear but hers and post seemed to be overlapping. I'm praying she is okay. I sent her a couple of PM and waiting to hear if this was just a error with the site.
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I have been very delinquent on trying to keep up with the boards. I have finally managed to catch back up, I will try to be better.
M360, I am so sorry to hear that you are having so many problems. I am also interested in recurrence, however I have had no problems in this area.
You know that this is our safe place to come when life is dishing us crap? I have been so busy trying to recover from our wreck last summer. I can tell you one thing and that is that this has kept me from thinking about BC.
However, I just can't seem to get well. I had more surgery in December on my shoulder and have been doing rehab. Now I have broken the rod in my leg again and will have surgery again in the next two weeks. I am going to go off of arimidex and go on tamoxifen because my ortho dr thinks that the arimidex is keeping me from healing. I went to my onc today and she said she had no problem with it. Now I will be off my cancer meds for probably 3 months. I had very few SEs with arimidex, I hope I do fine on the tamoxifen. I am also going to take Forteo to help build bone, and it comes with its on set of SEs. I just want to be well and get back to life.
I have passed all my three year cancerversaries with no problems. All my check ups have been good and have not had to have any extra scans or tests.
Good to catch up again
Juannelle0 -
Good to "see" you Juannelle!
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Thanks Joni. It always feels good to catch up here and see what everyone is up to.
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Hi Juannelle, I'm so sorry that you're still struggling after your accident, the AI's and some other medications that they give us do stop us from healing. Be careful and watch for any SE's. I'm on Faslodex and the first day I have bone pain and joint pain, then nothing else. But we don't know if it is helping at all.
I asked the doctors how long do they think I have and they said that is all the different medications I'm on now doesn't slow the process then about a year or so. However, with my fight they say maybe a little longer. I had a set back this week. I thought I had an allergic reaction to something and I usually don't run to the doctors, I take prednisone, benadryl, and wait it out. Well this time my arm got really swollen and it was the lymph-edema so I let my daughters convince me to go to the emergency room, they kept me in the hospital for seven days. What came from it all is that I had a full out Lupus attack, didn't even know I had Lupus, I was always told that I tested negative. This time they did blood, lymph-nodes, skin, and muscles biopsies and it's Lupus. So on top of being Stage IV I'm now fighting SE's from the Lupus. I just wonder if a girl can get a break in life sometime?
Here is an early Happy Easter to all of you out there and I hope you are all spending wonderful days and time with family and friends.
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M360--try to find a rainbow tomorrow (still Sat as I type this) & look for that pot of gold! I hope & pray for good times over the next while & peaceful rest so your body can continue the fight!
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M360, I am so sorry to read of your new diagnoses. I just wanted you to know that I'm thinking all positive thoughts for you.
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M360, I too am thinking only good thoughts for you. Keep fighting, you are a spunky gal.
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Hi everyone Happy 1st day of Spring!! and if you happen to be where there is still snow on the ground please send us some cold and snow here in the deep south so we can kill some bugs, spiders and fleas before summer. Thank you
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My dear M360 you are not catching a break. My problems are so small compared to yours. I am so sorry to hear that you have Lupus on top of everything else.
My surgery will be 4/3 and I will be off work for about 6 weeks and on crutches about 12 weeks. I should have some toned arms when this is over.
Happy Easter to everyone.
Juannelle.0 -
Happy Easter everyone!
Juannelle - good luck with your surgery and I wish you a speedy recovery!
M360 - your courage and attitude inspires me. I wanted to write "hang in there and keep fighting" but that seems pointless since it's not like you have any other choice. So instead I will send you some positive thoughts and prayers.
I'm still going through testing to determine what is happening on my right hip. It doesn't hurt but the ONC wants to know what it is and so I'm having ANOTHER PET scan sometime in the next few weeks.
All my bloodwork seems to be normal now and so I've gone ahead and booked my fat grafting with the PS to further reconstruct my implant side.
Happy Spring to you all!
Marie
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Hi guys!
Its nice to see some of these names again. I havent stopped by this thread in awhile.
My 3 year anniversary passed without incident.
Marie K and m360 you are in my thoughts!
Hugs and best wishes for all!0 -
Hello gals. I too am having some testing done. I am having pain in my left hip. So my ONC sent me for a bone scan. I did that last week so now they are sending me for an xray today. I am freaking out. I try to remember that is could be a billion things going on with my hip.
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Michele sorry to hear that you are having some worries with your hip. Have you had any recent falls? Since chemo I fall all the time and actually tripped over my old dog between scans!
What about your bloodwork & tumour markers? Mine were going up, up, down, up and finally are in the normal range. It's a big mystery as to why...my ONC tells me that some women are like that.
I had a bone scan (it's not a bad thing to have one done as a baseline), xray after that, then CAT scan, then PET scan. Still no answers.
My tumour markers are now normal but ONC wants to send me for another PET scan to see if anything has changed.
My bone scan showed "suspicious" lesions on my right hip, xray inconclusive, CAT scan showed nothing, PET scan showed something in the area as well. But my ONC tells me that bone scan was reviewed by radiologist who thought it was some kind of benign osteoma. He's following through because if that was the case then why did the PET scan fire up and why is the bloodwork affected and then not?
I'd like to think that it's probably some kind of inflammation - that can affect blood work and show up on scans - but time will tell. Right now I don't feel any pain but feel secure in knowing that I am being monitored.
I was given 3 rounds of Zometa (to build up bone and prevent mets) but stopped after I started having jaw pain.
Did you have Zometa?
My thinking is that it's better to have tests and know than not have any follow up and not know until it's too late.
I hope you get your hip sorted out soon.
HUGS to you all<
Marie
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Hey everyone hope all your tests come back B9 Love to you all and prayers as well.
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Well, my friends....it's back. I got a call from the ONC yesterday. She says that there is something there. I am going for a chest abominal ct on Tuesday. As well I will see her. I'll keep you posted. Please don't say anything on FB, my family doesn't know yet.
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Like others, I haven't been here for a long time. My 3 year anniversary was in Sept. I was dx with chest wall recurrence in January. I'm now 3 weeks post op and my left DIEP is half gone with pec muscle. Skeletal muscle they called it. It's devastating, worse than losing the originals. Grade 3 invasive. I feel like a hand in a poker game. What does 3 primaries & CWR trump.
M360, MarieK and Michele, I'm sorry you're going through more of this too. It all sux. I'll be on my barge on de rivah DeNile until hormone results are in. The next well intentioned person who tells me I'm amazing, brave, courageous, or a real trooper is gonna get ..... Upset with my reaction. Lol what I really want to say isn't PC..... I'm afraid my edit button is gonna be out of service real soon.
If anyone has CWR research to share I'd really appreciate it.0 -
Big hugs to all who need one!
Had my ooph on Thursday..... already have had a few pretty big flashes!
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MIchelle-I am so sorry! Keep us posted, here, where it is more private than FB.
She, I get that feeling of the PC thought process going by the wayside.. that happens to me more & more & I have nothing new going on.
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