Class of 2009 - Sisters in the same time frame
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((((Michelle)))) I'm thinking of you and praying.... Totally different than what you are going through but I still get sharp tight pains under my right arm pit where they took out the 4 lymph nodes and to the right side of my right breast. They gave me 39 radiation treatments and I have so much scar tissue that no matter how much stretching and pulling I've done or do it still catches often almost like I have a charley horse under my armpit and in the side of my breast. That's really the only way I can explain. The sad part there's nothing that can be done about it. Just gotta live with it. Oh well, small price to pay in comparison to so many other things. Especially when I'm on my feet for 12 and 13 hrs straight doing one long continuous med pass. Those are the days I don't get to eat, go to the bathroom or sit down and by the time I get home my feet are numb. LOL!! Those are the days when a catch in the armpit doesn't even compare to sore feet and a tired body... haha!!!
Be blessed as we all continue to travel this journey together. Love to all my sisters!
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Michelle my real name is Marianne.
I'm having so many SE's from chemo and other cancer meds. I find that I fall asleep just sitting in the chair talking with my girls. Then nights I can't sleep at all. Tomorrow another round and six doctor visits which means a full day at the hospital. I do feel the pain in my right hip and femur when I walk a lot or go grocery shopping. I was told I cannot do bike rides along the bike paths anymore, no horse back riding or using a small trampoline or exercise ball that I bounced on to move fluids in lymph glands. Doctors say it's too hard on my bones that have cancer and they worry about fractures. I am allowed to swim, and thank goodness it's warm so I can now swim inside or out, I do find that my hip hurts as I leave the pool if I do too many laps though! Have you other ladies been told to not do many things because of hip and bone mets?
I find that spending time with my children is all that matters anymore.
I'm wishing all of you the best.
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Marianne, Being with your family and supportive friends is the most important thing of all. Enjoy that time.
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Michele, I am so sorry to hear that you have had to start treatment again, sending you good vibs.
Marie, I hope they do to find anything new on you. I know it is a constant worry for all f us.
Marianne, I know you have been dealing with this again for awhile, keep your spirits up.
Hello to everyone else, hope everyone else continues to do well
I am still trying to recover from our wreck, and this is also the gift that keeps giving. I had surgery on 4/3 and when they woke me up they had not finished the surgery, so on 4/6 they operated again. They did not put another rod in my leg, they put a plate in. I am having non-union of the bone, so he is going to put me on Forteo. I have been taken off of Arimidex and am not taking anything yet. I will see my ONC the end of this month and she will put me on Tamoxifen until I can go back on Arimidex. As far as the cancer is concerned I am doing great there, I need some good luck in my life. If the bone doesn't heal this time, then the next move will be a hip replacement. I am not looking forward to that.
Praying for everyone
Juannelle.0 -
Another positive PET scan for me. Could be a false positive from a Liposlerosing myxofibrous tumour?
Next stop is a bone biopsy...
Wish me luck!
Marie
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Much luck, prayers & ju-ju headed your way Marie.
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Luck and love and prayers
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Marie, Sending you only posative happy vibes to help you relax and try not to stress to much.
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Marie,
I'm praying that it's not in your bones. Having such, I understand what you're going through and my heart goes out to you as well as my prayers. If you ever need to talk about anything and about bone metastasis, please feel free to contact me. I'm hoping that all goes well and it's not cancer. Let us all know.
Marianne
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Marie, keeping you in my thoughts and prayers. The waiting can be so hard.
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Still praying for you Marie!
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Hi BC IDC friends, I haven't posted on this thread but I loved the Class of 2009 topic. Just have a few questions maybe you all can weigh in on. I was diagnosed in April 2009, had lumpectomy on left side, then had a re-excision after finding a few bad cells in the margins from the original surgery. Started Femara in October 2009. My journey has not been without issues as many of you are experiencing. Lots and lots of bone pain. Onc took me down to taking it every other day. Then, summer of 2010 the generic came out. I started taking the generic and broke out with mouth sores. So I went back on regular Femara...bone pain came right back. I had to get a new Onc as mine went in to Research. New Onc put me on Aromasin (generic) and I got severe chest pains. Took a month off and now I am on Arimedix (generic). Only just started...didn't want to take it at all. For some reason, once I hit the three month mark, these side effects start. Am I crazy?? Have any of you experienced this in the last 3 1/2 years? What are your Oncs saying as far as - Can we go off these meds after the 5 year is up? At least I don't have the bone pain but I have a whole body stiffness going on. Have any of you taken the meds every other day to curb the side effects? All mamos are fine. I haven't had any other scans. Blood work is fine. Should I be so concerned?
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Hi, dear girl,
I’m dropping in because I was a person having trouble with hormonals! I started Femara in April 2010 and found it the heaviest therapy of all before. The first two months I felt nothing remarkable, later I got terrible knee pain, but my Onco was satisfied and said “it’s working”. I was taking ibuprofen for six weeks, then Vitamin D3, for a while it was better, later I also have so much backbone and muscle pain, stiffness, depression. Taking pill before sleeping was a little tolerable. Complaining to Onco about heavy SE’s he proposed to switch me from Femara to Tamoxifen, but having had thrombosis two years ago I didn’t dare. For months I was on pain killers; D3, Calcium helped little by little, the most helpful were ibuprofen and pills of 30% tramadol with 70% paracetamol, as well massages, exercises, swimming, acupuncture and warm sunny weather in summer. A friend retired Onco suggested me privately to take it every other day for a while. It helped a little. I promised to me to hold on only for two years and give up. At check-up seeing my arthritic finger knuckles Onco proposed switching to Aromasin (Exemestane). Asking about on boards some ladies consider it being more tolerable. I tried and I felt less pain however headache, dizziness, raised cholesterol and BP sometimes have to battle depression. Last months I feel whole body stiffness going on again! I was proceeding after the third year with mixed feelings. I think that I would feel better on multiple levels without this med in my system and only the anxiety over possibly increasing my risk of cancer recurrence keeps me from stopping it now.
I was said hormonals for 5 years, younger ladies for 10! Some do it, some drop, some get mets being on, some never got it although dropping. Who knows? I think we should try to sustain for long as possible.
Sorry, English isn’t my native language!
Best wishes!
Usha
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I started on tamoxifen but after having a hysterectomy was switched to Femara. I didn't tolerate it well at all and was switched to the arimidex. For me the knee pain and back pain come in spells. It seems to correlate with weather changes for me. Stiffness anytime I stay in one position for too long. Fatigue comes and go as well as insomnia. I take mobic for the knee pain. 5000 IU's of Vitamin D and Calcium chews that also have some Vitamin D. When I forget to take them I feel worse. I think I have been on it for two years now. lol I can't remember when they switched me. Going on 3 years for all of them this July.
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I had a total hysterectomy with both ovaries removed 11 years ago this past April 7th, long before BC diagnosis. Med Onco started me out on Tamox 10mg. I was on that for over a yr then without discussing or telling me why he increased me to 20mg (usual dosage) and I started having weight gain, creaky knee (only one knee) and pain in my elbows. Now mind you, I had been past menopause for many years I had not taken estrogen in years. They had checked my estrogen levels at the GYN just before I found out about my BC and they were rock bottom low and my GYN was putting me on Estratest (has progesteron and estrogen in it) for vaginal atrophy and I had to stop it. So anyway, I took the 20mg for about a yr and had issues with extreme wt. gain so Med Onco changed me to Arimidex (I really didn't want to take it, but agreed reluctantly). I took Arimidex for 8 month with no major issues except a little hair loss and minor joint aches... NO big deal really. Then all of a sudden, I got really sick. It started causing me to have major hair loss. My hair was coming out in handfuls, my stomach was killing me and I ended up with diarrhea for 6 weeks that wouldn't stop (lost 20 lbs) and they put me in the hospital to do test ( all test were negative and showed nothing). My primary care doctor said that she thought "I had develped and ulcer". LOL! I stopped taking the Arimidex the hairloss slowed and the stomach problems resolved after about 2 months. I gained some weight back. I went back to the Med Onco and he started me back on Tamoxifen 10 mg daily last May and that is what I currently take. I will take this for another year and I will be finished. I am not going to take anything past 5 yrs.
I know that everyone is different and has different side effects from meds. Mine didn't start till I had been on them 8 months. I've always been kinda strange. LOL I've taken antibiotics before and completed them and then broke out in a rash from an allergic reaction. Only me...
Have a great day!
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Mimi, you make me laugh...
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Hello All!
I had my fat grafting surgery on Thursday afternoon and I'm still on the pain meds. The breast part is fine and is looking nice and plump but my lower abdomen (where the fat was harvested) is giving me a lot of pain. Luckily it's the long weekend and I've got lots of family around to help out.
I also heard from the hospital and I've got a bone biopsy on June 3 for my right femur. I have a follow up with the ONC on June 19 - hopefully we'll get some answers and make a plan for the next steps.
I hope you all are enjoying the long weekend where ever you are!
Marie
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Marie, remind me...is the fat graft from your tummy for a new breast? I have delayed chemo brain, I guess. Best of luck on your biopsy. We should have a pocket party on that day. They have them all the time on the Canadian thread. We all will jump into your pocket that day and hold your hand. I will bring margaritas and perhaps a salty snack...
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Thanks Michele - a pocket party sounds like fun! I love margaritas and salty snacks although lately I've been indulging in chocolate martinis (1 oz Creme de Cacoa + 1 oz Vodka with a chocolate hersheys kiss).
I have a gummy implant but my skin was stretched pretty thin across it. I could see the implant like a dark bruise and it was very hard and tight pressing against my chest.
My PS felt that the best way to make it better was by doing a fat graft. I have to say that 4 days post op the breast area is much better - still a bit swollen - but I can see less of the implant and more "plumpness" on the ridges and divots of the reconstructed breast.
I'm off the demerol now but the lower ab area is still giving me a lot of pain. So I'll continue with some tylenol for a few more days.
Until then I'll have to hold off any alcohol....
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Marie I've never had a martini of any kind (never liked vermooth or gin- ugh it's smells and taste like pinestraw!) but the chocolate one sounds YUMMY!!! may have to give that a try
Hope you get to feeling better
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M360. I have been thinking of you lately and I am hoping you are doing ok. I find these threads arn't as active lately...I don't often post, but I am always thinking and praying for all of us..
Marie, what's up with you. Any news yet? How is your lower ab?
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Hi,
I feel to be attached to this site too and I’m always reviewing how the sisters are doing.
Let us know more about us!
Wishing the best to all of you - from all my heart.
Usha
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Michelle, Thanks for asking, I'm hanging in there. Markers are way up and with the heat in California I'm feeling tired. Wondering whether to continue treatment. All tumors are growing and cancer is spreading even while on chemo and Faslodex.
Went to visit my oldest and dearest friend yesterday ended up staying for over 15 hours just sharing and caring. Her brother was just diagnosed with lung cancer and has less tumors and much smaller than mine and he's given up. After seeing such, I decided that I'm not that person, who just throws in the towel. I see Oncologist next week and will have to start a whole new set of doctors again, four are leaving and going to other hospitals around the U.S. and I felt I wasn't able to go through history, rebuilding a rapport etc. But as tired as I am of doctors every two weeks, pain and just being tired (Seem to fall asleep during a conversation with my daughters, they laugh at how right in the middle of a sentence I'll start snoring. lol) I know I just have to try and see what changes they are thinking of making to try and turn things around. Spinal pain and hip leg pain limit me, but I've decided to dance for a half hour a day with my daughters to just keep dancing and being up. Easier said than done at times. I'd love a vacation but doctors said no traveling, horse back riding, no exercise balls, or riding bike, etc. I can swim but if pain increases stop immediately. Problem is I'm having mini heart attacks. I have an order to do not resuscitate so I take a couple of nitro and oxygen and I'm still here. From so much chemo and other medication my body seems to just be tired. I'm at peace and happy though. This weekend has been such an eye opening experience and I'm putting on my thinking cap and doing some research to see which way or what chemo next to try and turn my current situation around.
I hope everyone else is doing well and hanging in there. I think of you ladies often and sometimes I don't post because I was in such a negative mood with nothing changing or getting better. Why seeing and speaking with someone who was so eager to give up on life made me want to fight harder for my own situation I find interesting. I respected his views and offered to be there at the end if he needed because his sister and other family members say they can't handle such. I realized how lucky I am that my teenage daughters have taken classes for palliative care, stay in the hospital with me on pull out beds, go to every appointment and they take shifts so that someone is up with me when I'm up. If I'm having a hard night one of them will be up to just be there, if it's just sitting next to me reading a book, or on the computer, or watching a movie at 3 in the morning. Or bringing me a cool washcloth or a change a clothes after I've been sick. What a gift I have in my children. They want me to be here at home til the end and will do everything for that to happen. They want my last breath to be with them at my side. I was there for my mother but never expected it from my children. I feel so blessed.
I'm in one of those reflected moods and could go on and on.
Enjoy the weekend ladies and know that I thank all of you from the bottom of my heart for allowing me to vent.
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(((((I have no words only loving hugs)))))
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God just smiled on me. When about to start chemo on Thursday my port wouldn't work. Was sent to Radiology Intervention and they said I had a clot in my line. So after four flushes with Heparin, two TPA's, they could get a flush and blood back. This procedure took over 8 hours. I was asked if I wanted to do chemo or skip this week because my blood was off, so that I could have a PET Scan or skip PET Scan and do chemo. I chose to do the PET Scan because my left shoulder was in so much pain and I couldn't lift that arm. Also every time they told me to take a deep breath it hurt. I thought my cancer had just spread to different areas. Well had PET Scan and was allowed to go home. Next morning my phone was ringing off the hook. Doctors said I had to come into hospital and not drive because I had a Pulmonary Embolism, in both lungs. If I had not had the PET Scan they would have not found such and I would have died. So now I'm taking injections every 12 hours for the next 30 days.
Again my blood pressure was up, I told doctors and nurses that I couldn't take a deep breath. I followed my own instinct and knew something was off an the PET Scan would show what was up. I didn't think it would be what they found. I walk five miles every day and started swimming because it's summer time here. But I take Faslodex and read that 10 out of 100 women have thrown clots. I really wish I could have stayed on Faslodex but have chosen not to do so because the chance of another Pulmonary Embolism is too great.
How many of us take these medications and have no side effects, but there are also so many of us who do.
I think we all need to follow our hearts and what we feel is going on in our body. This has happened to me so many times that with this last situation I think God just has more for me to do here on Earth, and it's just not my time to go. My daughters and family have said if we had not lived this with you we wouldn't believe how many times death knocked on your door and you refused to answer it, and followed whatever was telling you to listen to your heart.
I hope all of you are doing well. I feel so blessed today to just post to you ladies today.
Love M
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What a blessing. God is good!
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holy cow.
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Hello All!
Marianne - you are so brave and your positive attitude is so inspiring! Way to go - you dodged a bullet with that embollism! Yes we should all listen to our bodies and speak up for ourselves. You are living proof of that.
Michele - thanks for asking about me. The lower ab lipo was brutal. I got some nice results and some fluffy bits on my reconstructed breast. I still have a bit of swelling but each day I see an improvement. The lower ab though will take some time to heal - it looks all saggy and pocked right now.
On June 5 - while still healing from the fat grafting (aka lipo) - I had a bone biopsy of my femur. The suspicious lesions that come up on the PET scan and bone scan are at the top of the femur at the hip. To take the biopsy the dr had to go through my butt while I was laying on my side in the CT scanner.
I'm sure you can imagine the indignity of having my bare butt out for all to see. But having children and going through cancer have taught me to grin and bare it during these procedures.
So while I'm lying there waiting for them to get me into the right position and start the biopsy the nurse tells me she's going to give me a cocktail - a light sedative - and then she says "your hair smells nice" and "now you're going to hear a drill". I'm not sure which one creeped me out more!
I see the ONC today and find out the results of the biopsy. I should know later today what path I'll be on next....
Wish me luck!
Marie
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Bad news...
The suspicious lesions on my right femur at the hip have been confirmed by biopsy as breast cancer.
ONC suspects that it's been there all along.
Now I'm waiting to hear from RAD ONC on starting radiation.
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Marie, I had to laugh out loud at ' "your hair smells nice" & "now you're going to hear a drill". I'm not sure which one creeped me out more!" Cracked me up. I so hope that it's good news.
M360-If nothing else, God is using you for this forum as well as blessing your family & showing them the true meaning of perserverance! You go girl!
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