Starting Chemo in Nov. 2011...anyone else?
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Hi everyone. Sorry that I've been absent again.
Q - so sorry that your path has gotten so difficult. It's hard enough to deal with this disease and all the side effects but to have loneliness and feelings of betrayal piled on is just (I don't even have a word bad enough to put here). I hope your camping trip went well. I agree that you have been an inspiration. There was more than one occasion deep into chemo crap when reading about you and your horses and camping really perked me up. To add to that you are always so kind to everyone. I hope things ease up for you!
Grandma - I'm glad you're doing well. Sorry you had that scare.
Nel, linny, bahamamom - Im glad to see that you're all doing pretty well.
I had scans in Oct. and Jan. that were mostly clear. No new tumors and the old one is still dying. I am a year out from my last chemo and that makes me happy. It's the longest break so far! I am working on building my very own new normal since I am obstinate enough to not let anyone else define that for me. 😄 I started a new exercise program for some balance and stability. It's working! I don't feel so much like a weeble wobbling. I am also tutoring 4th and 5th graders in reading. Poor things!
I'll check back soon.
Phyllis
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great to hear from you Phyllis! does sound like you are creating a new life out of difficult circumstances. I love how both you and GV are focused on improving your physical health too---as you keep your emotional health going.
I had someone who did body work on me recently say that my body is so busy trying to hold the physical body with this tumor together than my energetic body is getting sidelined-- so NOT me and I tool it to heart. Good feedback though.
I was going to wait bcuz i still don't have any answers but yesterday I did a difficult thing and left my oncologist and the whole hospital system I have worked with for the 29 years I have had cancer. The thought of it was hard but now that it is done, I am happy. I lost total confidence in pretty much every aspect of their system--and I forgot how important it is to have a wonderful relationship with your doctors.
The new MO i met yesterday is fantastic--even better for me than the one at MD Anderson (and she was terrific). She is also wanting to be more aggressive but still allow me the quality of life I cherish. So, once we get more imaging and testing done I have two options of chemo regimens and will tell you later but while I am not eager to go through yet more--I am hopeful I will be here on this planet a little bit longer---playing with "My Heart" (my horse, my Mesquite) and my new little dude-- Eli who turned 2 yesterday (I got him as "My Hope" of a life and a future).
So, while my camping last time was not great-- I was sick the entire time, I am off this morning for 4 days with my son to enjoy-- my best to everyone! Q
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Quaatsi, Wow what a change, and such courage. Good for you taking care of what you need. Hope you enjoy the time with your son.
Phyllis - Yeah and tutoring. I am a weeble wobbles as well.
Grandma - glad things are going reasonably well
I have given my departure date for work,2 years out, but I need some planning time as does the board of directors and my children. My plan is to sell the condo the kids and I are in, they should be on own, but I will always be "home" I will be moving to a house I have on Cape Cod. My hope is that I will have the energy to continue for 2 years and then some enjoyable retirement years
We are an amazing group of women who have weathered many storms.
Be well
Nel
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Phyllis, it's so good to hear from you. Glad that old tumor is still dying. I sure hope it will soon be dead. Exercise definitely does help with the balance issues.
Quaatsi - I hope your new MO will be able to find the right answers for you. Hope your camping trip is just what you need.
Nel - Wow, Cape Cod. That sounds wonderful. I hope your plan works out for you.
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I have been off on a cruise where I didn't have Internet, so on my return home, I read all the news and recent posts on our board.
Q-so happy to "hear" the new hope in your words. I know change can be very scary, but it sounds like you made the right decision to seek out a different path with your treatment, including the doctor. I hope you regain a positive relationship with your new team as well as begin the very best treatment options for you.
Nel-sounds like you are planning a lot of changes in your future too. I know you feel good about getting your children mostly raised. I am glad your treatments continue to keep your cancer cells away without overwhelming you with side effects.
Phyllis-the clinical trial you are involved in seems like a good one for your bone involvement. I am glad your tumor is still shrinking and hope that it is soon gone completely. It is great of you to tutor children. I am a retired teacher, and I help both my daughters who are now teachers whenever I can. In a classroom there is always something to do to help! Good luck with your exercise program.
Linda-I hope you are still enjoying your retirement. I am thankful every day that I was able to retire when I wanted to, not too long after my husband, and in good health so that I can still do the things I want to do. I hope your blood tests all turned out good.
Grandma-such good news on the spots your onc is watching. I know you were nervous about the 6 month wait, but hopefully, since they shrank some already, the next waiting period will be less stressful. I am so impressed with your renewed mission to lose weight. I lost about 40 pounds after BC, but this past year I gained 8-10 pounds of that back. I had hoped to lose 10 more pounds, but at this point, I would be happy to get back to where I was.
I really enjoyed the cruise and am happy to be back home too. Today I slept til 7:45, had a leisurely cup of coffee and then sat here watching the big snowflakes fall while I started a roast beef in the crockpot for dinner tonight. This afternoon I will pick up my 1 and 4 year old grandchildren and watch them for a few hours. I have a bone density scan coming up. I am anxious to see how the arimidex has affected my bones after 4 years now.
Hugs and peace to all.
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I don't know if anyone still checks this thread, but I got some good news today and wanted to share. My cholesterol was high after 9 months on letrozole. It got up to 275. I didn't have high cholesterol before so I'm sure it's the drug. 2 years ago I had managed to get it down to 265, then sometime later 235. Today it 216. So it is possible to get it down without a statin. I do low carb and exercise. Also supplements that are supposed to help. I was so happy to hear that. How is everyone? I have 11 months 2 weeks and 1 day to go till I can get off of it.
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That is great news, Grandma! I am sure that the better eating and exercise is all around better for you, and lowering your cholesterol is an added bonus. It sounds like you have decided to stop the letrozole after 5 years. I take anestrozol and have mixed feelings about stopping it next year. It is hard to know which things to be more afraid of-the BC returning after we are not taking the pills anymore or the side effects of the pills if we continue past the 5 year mark. I am seeing my onc in 2 weeks. She will tell me how my last bone density test was, and then I think we will decide whether or not to continue or switch to another type of medication. So many things to consider.
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that's wonderful news Grandma v!!
I am going to start Letrozole likely June. I found a whole new team that actually care about my living a quality of life no matter how long I have; they bothered to test the fluid near my lungs and there it was- the cancer cells that are driving my tumor marker so high-- hiding away. New Chemo drug- Tykerb. So far tolerating well. Some diahhrea. Fatigue etc..
Afraid to start the Letrozole--I don't know anything about it (any advice??) and my experience with Tamoxifen was horrible.
I am off trying to go camping but have lingering high fevers-- like really high (103-104). Scares me when i am 300 miles from a hospital (no exaggeration). Not sure if I should go on or stop this lifestyle. Its the "not gonna give up" in me...even if it kills me. I know, not funny..
Typing on my cell phone while i am still in range of a tower. Likely only one more day..
Best to you all, Q
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Quaatsi - 103 - 104 too high. Maybe you should go back until fevers are gone? Don't stop that lifestyle, it's so much a part of you, but maybe not camp so far away from home for a while. Letrozole hasn't been too bad for me. The hardest was 9 months into it, but my onco wanted me to stick with it a couple months more because he said the side effects level off and sometimes improve. He was right. The hot flashes have all but disappeared. Only have on occasion now. I tested positive for osteopenia in one place, femur neck, and haven't gotten worse. I do take a lot of supplements to try to minimize side effects. And you saw how my cholesterol soared, but now much better. So it can be managed. I don't know if you've met chrissyb. She's stage IV and only takes letrozole and has been stable for years. She's the reason I continued the letrozole during the worst part. I figured if it could keep her stable then it was worth staying on. I've been on it now for over 4 years and have remodeled my kitchen, and have started on living room, belly dance some and other exercise. So qol has been ok. But am looking forward when I can stop. I plan on doing research to do natural things to lower estrogen after that.
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bahamamom, Yea, I'm looking forward to stopping the letrozole. I've been reading on these boards that some onco's are recommending to stay on Ai's longer, but I don't think mine will. He is strictly by the book. If the standard changes, however, he will. Also there are a lot of factors to consider, stage, nodes, size of tumor, general health and percentage of risk with and without the Ai.
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Quaatsi-I am glad that you are going to be starting letrozole along with the Tykerb. Everything that we can add to our arsenal gives us more opportunities to live a full life. I take another similar AI (anestrozol). Like Grandma said there are side effects. My worst was bad pain in my thumbs - trigger finger. I couldn't even turn a doorknob to open a door or write (and I was a teacher-so big problem). It got so bad that I was ready to see a hand surgeon to fix the problem when all of a sudden, it got lots better. Now I occasionally have a much less degree of discomfort but nothing like before. I also worry that you would be far away from home and medical care as long as you are having those fevers. It is hard to care for yourself when you are that ill. Just keeping fluids in you is very important under those conditions.
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Hi ladies,
Q - I'm glad that you did what you needed to do for your treatment. However I'm sorry that there is more crap to face. Maybe taking care of yourself physically is the new lifestyle for a while. Maybe "for a while" is all it needs to be, then you can get back to the way it was. OR...just ignore me. (I end up having to reinvent myself about every 8-10 years.) I hope things are going smoothly.
Nel - I hope your plans are all working out. I'm with GrandmaV - Cape Cod! Sounds like a beautiful place to retire to.
GrandmaV - I'm so happy for your success with lowering your cholesterol. I understand that can be a struggle.
bahamamamamama - Glad that you got a cruise! Also glad that your pain level is much better.
I don't know about targeted therapies since I'm triple negative and we don't gots none of those. We suck.
I just got news on Friday (from a biopsy) that a pesky abdominal node that showed up in January is now growing and is malignant.
There is something funky going on with my sternum tumor also. It should be dead but instead it grew a bump of it's own. Really, for heaven's sake! The area shows more dye uptake on the PET but the docs are trying to decide if the change warrants a bone biopsy. I don't really care what they think. I know the little bastard is back.
Anyway, I am waiting for the consensus from my RO and MO about the new treatment plan for one or both areas. RO says surgery to remove the node is the best way to get rid of it and then radiation on the area. He was to meet with MO today to hash it all out and determine if the treatment plan will include chemo.
There is all sorts of buzz about new treatments being developed for TNBC which is great but almost all of the studies do not include metastatic cases. They better hurry the fork up!
Phyllis
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Phyllis- so good to hear from you, but I am sorry to hear that you are still battling the bone mets and now a new abdominal area also. Are you still doing the clinical trial for bone mets? I hope your continued journey is both easy and positive. I am sending you a hug and healing thoughts.
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good morning ladies-- i thought I replied to Phylis' post but it never got posted so I am home--early from my trip (darn, but reality required it). Phylis I am so sorry you continue to deal with all this. Then I think, but what is our choice? I admire your strength--heck I admire so much in everyone one of you on this thread. You are all amazing women.
I think about all this alot but yesterday was full of emotion--emotion I cannot seem to share with my engineered minded spouse. It was not only Mother's day and I have a special needs son I do not want to leave but also, it was my 59th birthday. On my trip at one of the many low moments of fevers, i got to calculating the average survival and figured if I was average, I will not see my 60th birthday. It gave me pause, let's say. But i am not 'average" in fact I do not think anyone one of us here on this particular thread is "average" --we go way beyond that. So I figure that I have longer and if I do, I don't want to live with fevers and weakness. So I have to come up with a plan of action that take care of the thing I personally CAN do. I have an appt with an Infectious Disease Specialist in 2 weeks but in the interim....
These are the cards I/We were dealt. Grandma V-you got it girl--you have a formula for what helps you--you are amazing. I do as well but was waylaid by whatever happened last November (my infected port???). So with my son, my absolutely amazing son who brought himself back from taking the dark route he started down when he found out I was dying and was just accepted into EMT school (free tuition!) I will counter what I CAN do and keep playing that card game-- no matter what card gets handed me.
love you all-Q
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Thanks bahahahahahahamama and Q. Quaatsi, you're right. These are the cards we've been dealt. I've decided to just play the hand.
I had a long talk with my MO today. Details of all that carp are here: www.carepages.com/carepages/phgraham
No, I am no longer in the trial for bone mets. The malignant node kicked me out of that one. We are now looking for new trials. Hopefully one of the new immunotherapy studies. I feel a little at loose ends while we're waiting on that but mostly I feel pretty good. My health aside from cancer is pretty darned good, so I'm going with that!
I hope everyone has a great day.
Phyllis
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Phyllis, I love your attitude. I hate that cancer. It just won't quit. I've heard that the immunotherapy route is doing amazing things. Is that what President Carter did? He says his cancer is gone. I heard pembrolizumab is for advanced triple negative breast cancer. I hope you can get in a trial with this one. They are currently enrolling in the KEYNOTE-086 phase II trial
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Quaatsi, Your post sounded hopeful. It was very good to hear. Thank you for that. I agree infectious disease doc is a good idea. I had MRSA in 2012 and now any time I have an infection they just automatically assume it's MRSA and do not test it. I'm sure I got it at the cancer center. Regular docs just dole out more antibiotics (which is what caused superbugs in the first place) whereas infectious disease docs have other things in their arsenal.
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Quaatsi, that news about your son starting EMT school is great. I know that you worry about his being able to take care of himself and that will give him a skill that he can use to do just that. And yes, you most definitely are not average, but well above the crowds. I know that will serve you well as you continue this journey.
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Good evening all,
Haven't been here for a bit. Continue to plug along. Fatigue really gets me down - not sure I will last working for another 1.5 years - but one week at a time. Recent discomfort in a rib, so a PET Scan. Neither the radiologist or Onc were able to say definitively yes cancer spread or no. So sitting in an unusual space and watching and waiting.
Yep - these are the cards we have been dealt. I wish all a wonderful weekend
Nel
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How is everyone?
I just want to check in with you lovely ladies. I am still waiting on a treatment plan. I will meet with my MO on Wednesday and am waiting in a consultation date with a thoracic surgeon. Evidently they have not found a trial for me. I hate the waiting but I know that at this stage of the game I want the best opinions. I guess I have to wait for them.
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Hi Everyone ~ Sorry to have been away and not keeping up with all of you, but I think I needed a break from all things cancer for awhile. I am sure some of you will understand that. I am happy to hear that there are some great things happening, but sad that the big C is giving others of you some trouble. My big issue is that I need/have to lose weight and just can't seem to get into the mindset. I know that the estrogen from fat is a bad thing and I keep wondering what is in my brain that seems to ignore this fact most of the time? I have to have my yearly mammogram in July and see my MO in August. I do like the MO a lot, but for some reason I felt "safer" with my original doctor. Maybe it is because he was stricter and a stickler, and the new one is a female who seems to be in tune to what women feel, and is more casual in her demeanor...not that it's a bad thing. i guess I am just a hot mess who can't decide what I need!
I know that some of you have much more serious issues than I do, and I hope that those of you who are having active treatment for mets continue to do well. How I hope and pray that a cure will be found soon. I truly do think of you guys even though I have been away for awhile. You are awesome and brave women who have gotten me though many rough times. Hugs to all...Linda
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Hi, special ladies. Nel, I am sorry you are feeling so tired. Cancer treatments definitely zap your energy. I retired 3 years before I had planned, but I have no regrets. After cancer, I felt like I would rather have peace and fun more than the extra money that retiring later would have brought me. I hope you can continue to work as long as you want to, but that you can stop whenever you are ready too. Phyllis, I hope you begin to get some answers and soon can start any new treatment available for you. It is odd that now things seem so slow for you because with the initial diagnosis, it seemed like everything was lightning fast. Linda, I also continue to try to get extra pounds off me. I had lost 40 pounds, but 10 have come back and I struggle every day trying to lose it back.
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Hi Gals,
Phyllis I hope you find a trial soon-- so sorry things are such a challenge--waiting is definitely hard. Do you think it is because your hormone status is negative that makes it harder to find trials?
Linda-- I try to keep my weight down and when it goes above a certain "magical" (?) number I start to vomit every night spontaneously while sleeping. I think it is because of a valve that is defective but I cannot get a GI person to take me seriously-- they seem to be the worst doctors. That said, I go to one tomorrow for whom it took me 3 months to even get them to respond to my doctors referral and she is supposed to be good...we will see. And, I worry since i start an AI in the next month and find that people seem to have more weight issues. This is not your fault Linda--so I surely hope you are being kind to yourself!
Nel-- any news on that Petscan and the rib?
I had my left pleural space again drained--300 cc's of fluid. I kinda feel better but not really sure. Tumor marker didn't go up as much as it normally does every month. i take each each day and some days seem awful long as I lay around doing what feels to me as nothing. Finding myself uncharacteristically irritable. Kinda like I am just waiting for the whole thing to just end--- and no, I am not ready to go but its that waiting thing that gets me.
Meanwhile, I think I am doing crazy stuff like decorating my house. I get started and then I poop out due to the fatigue. Of course, today it is 118 degrees outside so that might not be helping too much (and no, I am not exaggerating).
Q
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Quaatsi, 118 degrees - I can't imagine leaving my house in that weather
Phyllis - any word on a trial. We do a lot of waiting in this world of cancer
LInda - I tried weight watchers online last year and did well. I didn't want to go to meetings. Then I got this crazy idea I could manage myself and promptly regained everything. Such is life. I think with all our bodies have been through, we need to be gentle with ourselves.
The discomfort from the fractured rib is gone - so I guess that is good news. If the discomfort had gotten worse - then he would have assumed it was cancer growing. I haven't seen my onc in about 6 weeks, have seen his NP who is wonderful, but it doesn't feel like she has much info for me. Looking forward to seeing him on Wednesday. It sounds like the plan will be wait and watch with a PET in the fall. So much waiting.
Hope all continue to find moments in each day that are joyous
Nel
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Hi all. So far no trials are available to me. Do you think they heard about me?! Anyway, I was to have the lower half of my sternum removed along with the abdominal node last month. When I met with the thoracic surgeon he was concerned about a spot on my right clavicle. So, no surgery until they find out if the spot on the clavicle is malignant. It wasn't clear on the April PET. A new PET the first week in October to see if it has grown. If not, then I can have the surgery. If it has grown, they will go back to the drawing board. However that damn drawing board is scribbled all over. I hope they can find room for the new stuff!
Quaatsi - yes, a big problem is the triple negative status. That plus it seems to be a resistant type. What happened with your new GI person? I made the docs schedule the next round of stuff after my vacation. A friend and I are taking an Alaska cruise in September. I didn't want to try to take the vacation so quickly after such a big surgery.
Nel - I'm glad your rib is better. How did your June appointment go?
Speaking of losing weight, I've lost 33 lbs since I quit chemo in Dec 2014. That was the most I ever weighed. I lost a bit between then and February of this year. In February after the Jan. scans, I started a new fitness program and started eating better. 18 of the 33 lbs were lost since February 1. www.growyoungfitness.com I feel so much better! I am no longer a squishy mushroom and my balance is better than it has been in the last 5 years of treatment. The program starts with exercises from and beside a chair that you can use for balance. I started out pretty wobbly but now I'm a happy camper. Yippee! I'll feel strong for my vacation and that's not nothing. (please forgive the double-negative used for effect)
Phyllis
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P-- if they heard about you-- they would WANT you-- you are tenacious as a bulldog!!! (never had a bulldog, are they as tenacious as a terrier??)
I am so happy that you feel up to a trip and that you have a friend who will go with you and can enjoy it with.
I am very tired of our 100plus degree temps-- maybe the worst summer and certainly for me-- I am on Letrozole now and the hot flashes--well, it seems that when I DON'T have one, it is unusual ...lol... but I can handle it- I just haven't been able to do the things I love.
That said, I had several friends just complete the TEVIS--100 miles in one full day--no sleep for horse nor rider! And there was 75 year old woman who completed. I thought--well, if she can do 100 miles, I can certainly get back to doing 30 miles, right? RIGHT??? lol so I am motivated ...except for the heat...oh and the snakes...yes, the snakes in the heat--they come together.
Keep it up ladies!!! I hope you all are enjoying summer more than I am! Q
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Hi everyone, we are 5 year survivors this year! Yay us!!! Just passed my diagnosis date of Sept 1. My latest mammo shows the 3 cysts they've been watching have shrunk. No need for mammo every 6 months now. 7 months more of letrozole if everything continues as it is. Hope everyone doing well and find joy in every day.
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Hi Everyone,
5 years - WOW. I continue on herceptin every 3 weeks and tykerb each evening. Fractured rib earlier this spring that presented a scare, but apparently just a fractured rib and nothing more!!! Planning for my retirement in about a year - many changes ahead
Grandma - glad you are doing well.
How is everyone doing??
Be well
Nel
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Five years - I go for my mammogram in October, and I will feel like the 5 years are up then I think. I enjoyed hearing from everyone on their updates and wanted to share mine. I still think of you all often and cheer for your progress and accomplishments. I am going on a weeklong vacation to Las Vegas with my husband next week between my birthday and our anniversary. I am really looking forward to that.
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Saw my onco yesterday. He asked me if I can tough it out 6 more months on letrozole. I told him I've made this far, I'm not stopping this close to the end. Released from my breast surgeon this week. No more annual check ups with her. Only call if something new. That made me so happy. Onco wants me to have another bone density test in December. So I guess I will, while I still have my good insurance. Probably will change next year.
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