Starting Chemo in Nov. 2011...anyone else?
Comments
-
I hope we hear from Linda soon
0 -
Quaatsi,
I am sorry to hear about your son. Gentle hugs. Our children, no matter the age, can bring us so much joy and equal measures of heartache. My son, 25, has had issues over the years with drugs, alcohol He is doing better these days, but still a worry I have been on this cancer path for 8 years and am so tired of it. I am grateful to be doing well ,but tired of the treatment routine.
That we continue to do well
Nel
0 -
I can't sleep tonight. I've got too much on my mind. So much to think about. I've been reading through our thread again and it brought back so many memories. We really did support each other through some tough times and I just wanted to say thank you to all of you for that close bond we have. Quaatsi and nel , I value your friendship so much. You've got so much to handle and yet you're facing it with such courage. I've read a few forums for pulmonary hypertension, but they're not anything like what we have had here. I feel very lost. The number of posters on our thread has dwindled down to just a few of us and we have lost many friends. Bahamamom, you've been right there helping with all your kind words, while you too were going through many personal problems. Your friendship is very important to me, too. I look forward to hearing from you all and became dependent on this connection and fear we're about to loose this beautiful camaraderie. I hope we hear from Linda real soon. I would also like to hear from yaya ,and many others we met along the way. I'm not sure how to handle this diagnosis. There's no real treatment plan, no solid path that gives any kind of hope. I'm on medication for my blood pressure and it's some of the same ones they use for ph, diet and exercise. I think I need to find a new doctor for it. I really like my cardiologist, he's the kindest and most caring doctor I have ever had, but I feel he's not doing enough for me. After the insurance change in July I may try to find a pulmonologist to get a second opinion. Until then I'm doing research to find out what else I can do to slow the progression. I've lost myself and can't seem to find the positives.
0 -
Grandma and all,
Gentle hugs. Grandma-find a new cardiologist if that seems the right thing - even if just for a second opinion. That might help put your mind at ease a bit. Seems like just having cancer should be enough I fell last week, note to self do not stand on chairs to try and change lightbulbs ughhh. I t seems I may have done something to my rotator cuff. S o annoyed with myself See orthopedist Monday for treatment plan Just get rid of the pain.
Quaatsi, H ow is your son.?? Our joys, our worries
Hope we hear from others soon.
Nel
0 -
Howdy all, Sorry about your rotator cuff, Nel. One thing that I try to keep in mind is that I have enough to deal with and will do anything to avoid a surgery that would slow down my time left-- and yet, I still ride a horse which is pretty dangerous since he is a youngster.
Things are not good with my son. I cry often. I have gone through chemos I did not want because I wanted to be there for him. It is affecting my will to live. I have been at this cancer gig for 32 years and frankly, I am tired. Tired of each day the word cancer is in my face. And now I am wondering why bother.
I think a second opinion is always a good idea, Grandma.
my best to all, Q
0 -
Quaatsi,
Good news I do not need surgery - very happy to hear that. A small tear that will hopefully improve itself with time and PT. So we will see. I resent every minute I have to spend with anyone in the medical profession. I have only been on this road for 8 years, not sure how you have done 32. Our sons - I know him better than he knows himself, right now he is doing OK, but I am his anchor I worry so when I am gone, but he is bright, knows what he needs to do to move his life forward - but isn't able to maintain I see some maturity - but still sleepless nights I am right there with you
Nel
0 -
Nel, how is your rotator cuff? I hope it's much better now. Quaatsi you're in my thoughts. Only other mothers can understand the kind of pain you're dealing with. My two grown children have both at some point did some really disturbing things in the past so I can empathize. Don't blame yourself. You've been a wonderful mother to him and he will know that someday.
I have stopped anastrozole about 6 weeks ago and am just starting to feel some better. The biggest improvement is stamina. I can last a little longer doing my everyday stuff, before having to sit down. Also I've noticed the depression lifting. I am finding joy in things I had lost interest in doing. I haven't done the second opinion, yet. I'm going to wait til I get Medicare and supplement sorted out. Medicare starts July 1, I have my drug plan, now it's just a matter of the supplement. I'll probably call my onco next week and let him know I'm off the drug. I'm supposed to see him in October, but he may not have me come in. I finished physical therapy Friday. I don't have the sharp pain under my shoulder blades any more.
0 -
Hi All! It's been way too long since I have posted and I see that our group hasn't posted in many months as well. I hope all of you with ongoing treatment are doing OK. I know how hard it must be on all of you. I am still taking anastrazole, but fear that will be stopping soon as my calcium and magnesium levels are very low and I'm pretty sure that means that bone loss has been happening fairly rapidly. I have a fear of not doing "something" actively to stop recurrence, but I know that many of you have had a recurrence even though you have bravely done all that is available to stop it, so I will try not to complain or whine about it. I am sorry to hear that we have lost Phyllis. So many times I wonder what has happened to the many women who were on the original journey we all shared. My hope is that they are busy living busy, healthy and productive lives. I apologize for not posting in so long, but I guess I finally took that break I knew I needed. I hope to hear from all of you soon. Take care...you are in my thoughts and I pray that you are all doing well.
0 -
Hi, Linda and anyone else who is still out there reading our posts. I just had my mammogram and all was still good, so I'm happy about that. This past year's check up, my oncologist put me on Boniva for bone loss from the anastrozole. It's not too bad except that I have to take it first thing in the morning and wait an hour before eating or drinking anything else. And I am fond of my morning cup of coffee, so that is rough. I'm also supposed to stay upright, not lying down or relaxing in a chair, so I usually go for a long walk after taking it. That works out well because it kind of gets my mind off the coffee I'm missing, but at least it is only once a month to take it. I hope everyone is enjoying the fall weather. Peace and warm hugs to all.
0 -
I am still here-- kicking and fighting. been a pretty hard last 6-12 months with one chemo after another. Nothing seems to work anymore. Either the side effects are too much for my increasingly frail body or the cancer seem to be growing-- although we cannot find out where, only the tumor marker increasing is its indication. I was seeing one MedOnc for about 3 years after my very loved MedOnc left UMC and this other woman was fine but was not taking care of ALL of me and pushed stuff away-- including low red counts. Seems my bone marrow is not making enough red cells and I was anemic. It was a simple thing to check and she left me hanging with me telling her all of the symptoms of anemia. By the time I forced her to do the tests, which are simple, I was so low I was at the point of a transfusion. They gave me an infusion of iron but I lost trust in her and found what I believe is a magnificent doctor back in a hospital setting (UMC). I need that. I spent 8 days in the hospital last week after coughing and vomiting getting aspiration pneumonia. My new MedOnc even came into the hospital and coordinated my care. Given everything we are switching chemos yet again tomorrow. My oncologist feels I cannot take what is standard so she is arguing with the insurance to pay for a different regimen. I guess I find out tomorrow if she found someway to pay for it other than 60K from me which we do not have. And maybe it will work, hopefully for awhile. We are kinda out of options after this. But otherwise everything else is fine. Glad to hear from some of you. Hope all else are well. Q
0 -
Saw my onco today. I was really dreading it, because I stopped taking Aromatase inhibitors in June. I took all my research with me and was ready to defend my decision. When I told him I stopped and how bad the side effects had gotten, he simply said "That sounds reasonable. You were on them long enough" I about fell off my chair. I am elated. He still wants to see me in a year, though, but now I feel free to concentrate on extending life from pulmonary hypertension (pah). Amazingly enough the supplements I'm taking also are recommended for that, and loosing weight and exercising. But I feel that I've improved in the pah area too. It's been 4 months off the Ai's and I have improved dramatically.
0 -
Hi everyone, Had a bit of good news. Ct scan shows I'm still cancer free.
0 -
congratulations!!
0 -
Thanks Quaatsi, glad you're hanging in there.
0 -
Grandma V ...So glad you got a great report and continue to be NED! I am still taking anastrazole, but my osteopenia has progressed, so I'm not sure how long I will be able to continue. I do wonder how I will feel once I no longer take it. I see my MO in a couple of months for another check up. My other one left the facility to work closer to home, and while I liked her, I LOVE my new doctor. Things are stable and for that I am truly grateful.
Quaatsi...I'm sorry that you have had another stay in the hospital and hope you will remain stable and able to tolerate your new protocol.
You are both true warriors and I admire the way you have been able to keep fighting the fight. I pray that 2020 brings,all of us peace and stability. Take care and I hope to check in and continue to find that you are both doing well.
0 -
Good afternoon,
I am still here. Semi retired, living on Cape Cod and working part time. I think folks know I have been stage 4 for 8+ years. The only place the original cancer has spread is to my adrenal gland, go figure I have been very fortunate It has come and gone depending on response to treatment. So if you live long enough (LOL) new treatments arise So I just had 5 SBRT aimed at my adrenal gland I will have a PET Scan in September to see if the tumor has been eliminated or stopped growing So fingers crossed If I get good results I will not have to continue in treatment every 3 weeks I have been every 3 weeks for 9+ years The novelty has worn off LOL.
I wouldn't have to go back to chemo until the cancer showed up on my adrenal or someplace else - Even if I get 3 or 6 months without treatment on a 3 week basis I will be DELIGHTED!!!!!!!
In the interim, enjoying life, the beach, my kids, my friends etc Had plans for Italy in May - alas -that did not happen, but otherwise all is good I have been cautious, but not a big worrier.
I hope all are stable and moving along as we are able
Gentle hugs to all
Nel
0 -
Hello, everyone. I always enjoy hearing from all of you. I am glad that you are still cancer free, Grandma V. I hope you are still improving from the side effects you had, had with the AI’s. Nel, I hope that you do get a looooong break from your treatments. I’m glad you are enjoying Cape Cod and semi-retirement. Linnyhop, I am still taking Boniva for the osteopoenia. That seems to be slowing down the bone loss. I hope yours is stabilizing as well. Quatzi, I hope things have settled down for you and that this year is going better than last both health wise and in your relationship with your son. Things are going well for me. I’ve had another good yearly checkup with the oncologist, and I can still take anestrozole without it causing me too many bad side effects. I’ve been on it for more than 8 years now. I am spending time close to home as I’m sure all of you are too with the Covid pandemic, but I enjoy reading, watching movies on Netflix, and spending time with my daughters and grandchildren. Always thinking of all of you and wishing for the best health and happiness.
0 -
Hello all! Many months have passed since I last posted and I am happy to see that for the most part, you are all hanging in and continuing being the warriors that I have admired these past nine years! I have been on a journey of self reflection since all of this covid mess started. I have used the time wisely and finally figured out that in my old age, I no longer will allow myself to tolerate things that I shouldn't have allowed in my life. For far too many years, certain family members have been disrespectful and very unkind causing me much emotional pain. I won't bore you with the details, but will say that it has been very freeing to finally realize that I will create boundaries.when needed. I am quite certain that what I have allowed to happen in.my life has definitely contributed to my developing cancer and the other autoimmune diseases that I have had affect my health. It's too bad I waited so late in life to realize that I am good enough, but hey, better late than never, right? Fortunately, my husband is very supportive, so between that and using the quarantine time for self reflection, I will actually start standing up for myself. At least that's my plan...lol!
I saw my oncologist last month and it was a positive appointment. I really like and trust her. However, next week I have my yearly mammogram, and I am always anxious and fearful. I.know you can probably all relate. I am still hanging in there with the anastrazole, almost eight and a half years. As long as my osteopenia remains stable, the goal is ten years. I really wonder if I.will.have less aches and pains once I am finished?
Sorry to be so long winded. I truly hope that all.of you are finding joy in each day. I keep.positive thoughts that those of you having ongoing treatment remain stable. This has certainly been an unwanted journey for all of us, but I am grateful to have had the wisdom and support from everyone in our group. Thanks for being there no.matter how much time passes between our posts.
U
0 -
Hello all! Many months have passed since I last posted and I am happy to see that for the most part, you are all hanging in and continuing being the warriors that I have admired these past nine years! I have been on a journey of self reflection since all of this covid mess started. I have used the time wisely and finally figured out that in my old age, I no longer will allow myself to tolerate things that I shouldn't have allowed in my life. For far too many years, certain family members have been disrespectful and very unkind causing me much emotional pain. I won't bore you with the details, but will say that it has been very freeing to finally realize that I will create boundaries.when needed. I am quite certain that what I have allowed to happen in.my life has definitely contributed to my developing cancer and the other autoimmune diseases that I have had affect my health. It's too bad I waited so late in life to realize that I am good enough, but hey, better late than never, right? Fortunately, my husband is very supportive, so between that and using the quarantine time for self reflection, I will actually start standing up for myself. At least that's my plan...lol!
I saw my oncologist last month and it was a positive appointment. I really like and trust her. However, next week I have my yearly mammogram, and I am always anxious and fearful. I.know you can probably all relate. I am still hanging in there with the anastrazole, almost eight and a half years. As long as my osteopenia remains stable, the goal is ten years. I really wonder if I.will.have less aches and pains once I am finished?
Sorry to be so long winded. I truly hope that all.of you are finding joy in each day. I keep.positive thoughts that those of you having ongoing treatment remain stable. This has certainly been an unwanted journey for all of us, but I am grateful to have had the wisdom and support from everyone in our group. Thanks for being there no.matter how much time passes between our posts.
U
0 -
Anyone out there? Hope you're all doing ok! 😁
0 -
Hi, Linda, I am still here. It was good reading your post a while back. I was just too lazy to reply. I know what you mean about having family members try to run you down. It really does take a toll on you. I am very lucky to have close relationships with my sisters and get along great with all of them. We can't talk politics. I am the black sheep of the family who disagrees with all of them on that, but otherwise, all is good. I am the youngest, so that may be why, but even though the 4 of them sometimes have disagreements, none of them ever try to hurt me. I am glad that you are trying to distance yourself from that stress in your life. I don't think we should waste a minute of this time we have left worrying over things like that. I was worried that I may be getting inflammatory breast cancer a while back. I have several of those symptoms, and I was a little worried that my upcoming mammogram wouldn't catch it. But the bruise that I was most worried about has gone away now and the other symptoms have been there a long time, so I am feeling better about that. I will ask the doctor who sees me when I get the mammogram the end of this month, and hopefully he can reassure me. Like you I have been on the anastrozole so long that I don't know if I will feel better when I stop taking it or if my age is part of it by now too. It is hard to say. I always think of all of us at this time of year, our cancerversary. As always I wish all of you good health and happy lives.
0 -
Hi all,
I am still here as well Almost 10 years with BC, 9 of those with MBC. This summer has been a roller coaster with treatment - still not on steady ground but hopefully in the next month. Probably have to change docs as well Very unhappy with current onc.
Not working for the present - will see what happens after the first of the year. Covid, election etc all a bit unnerving
Kids are both doing well. Our little dog, Maltipoo, 11 years old is failing. He has congestive heart failure Difficult decisions are coming. My daughter who is 22, will be a mess. She love him more than life itself.
Hope all have great holidays - safe, simple and enjoyable
Nel
0 -
here too. 33 years of cancer... stage 2 NHL AND 10 years BC. Last almost 6 with MBC. Getting so tired. New drug after new drug, destroying my willpower. Nowxat end of what is available and it’s not working and I cannot tolerate side effects. Nel, what are you doing and how do you handle it? Please.
My son keft for the umpteenth tine but gor good this time. Twisted. Mentally ill. All my fault i ruined his life... time i think to allow my body to go. Too many toxins and i feel beaten down. trying to decide this week.
0 -
Quaatsi,
Apologies for the delay in responding. My roller coaster continues. I am tired but still feel well enough to continue on the treatment path I know a day will come. It is a struggle for all of us. I have an anti depressant and anti anxiety that are probably what allow me the energy to get out of bed everyday I hope you are reasonably well These decisions are difficult Feel free to PM me if you wish.
0 -
Hi everyone, I wanted to wait til after my cancerversary to share an update. I'm trying to break the pattern of being diagnosed on Sept 1. Had a ct scan recently and it showed a few cysts on kidneys and a small nodule (3mm) in left lung. Primary wanted me to go to onco and get a pet scan. So I made an appointment, but pushed it out to December, because I really don't want to go. Radiologist that did the scan recommended ct scan in 6 mo's. So that's what I'd like to do, we'll see what onco says. Otherwise I'm feeling fairly well. I lost the 20 pounds I had gained back after last surgery. So back to the 50 pound loss I had before that. I need to loose another 50.
I miss you all and think of you often. Quaatsi, nel, Bahamamom, linnyhop, I hope you're getting the care and love you so richly deserve.
0 -
Hi to all. I am always so happy to hear from each of you. Nel and Quaatsi, I hope that you are still finding some joy in your days. I know that you both are tired from all you’ve been through and pray for strength for you to continue your battles. Grandma, I hope your tests are all benign, and I’m sorry that you have that to worry about for your near future. I’m happy to hear that you got those pounds off again. I’ve always felt that losing weight once should be enough, that you shouldn’t have to keep doing it over and over, but it’s the story of my life too. I am at a good weight right now, not perfect, but wearing a size I feel good about. We are going on a trip to see the Balloon Fiesta in Albuquerque later this month and I recently was able to go on a shopping spree for smaller clothes to wear on the trip. That was super fun! Linda, how are you? Ten years! Thinking back on it all and how it played out, I’m still shocked by how fast and how overwhelming it all was that first 6 months or so. I can’t help but think I’d be so much better prepared now (if I needed to be) than I was 10 years ago. Warm hugs to all of you!
0
