August 2010...anyone starting chemo besides me?!
Comments
-
Good evening chemosabes and radicals:
I hope this post finds you all doing well. I just woke from one of my luscious naps! I wish I could say I did not need these naps but I do. In fact, before this past year I *never* took an afternoon nap in my life except for maybe the occassional one on the weekends where I am attempting to recover from the night before! In any case, I am wide awake now!
Ckptry: What I don't understand is Yale does not like to do post-chemo mugas NOR regular ones. They just told me today that usually they only do 1 before you start chemo to "qualify" you for chemo and then don't do another? I was like uh, no, we are doing another one. They act as if I am insisting on something that is completely never requested. The freakin' patients should NOT have to request...they should just be doing it. You and Lisa are both getting regularly scheduled, post-chemo mugas/echos and this should be protocol for all of us. More inconsistencies in cancer care.
Lisasinglem: Have a great time in Durango!
Iowa: the lady that had mets after 13 years is an example of progress being made in treatment as she was able to benefit from something that was not on the menu when she was first dxd. That, if nothing else, should give us all hope that even if the distant future, should we have recurrence, we will benefit from the standard of care at that future date. That is the definition of hope!
JSW: not so good news on the extra cells in the epithelial layer but certainly going onto rads quickly is. I am sorry to hear they did find additional cells but they seem to think it is so sparse that perhaps rads now, a later retesting and a plan of action from there is what will benefit you most at this time. Cells....damn cells!
Unbelievable that you, too, are scheduled for a muga regularly and I have to fight to get one ordered at Yale. I don't understand.
Lady: so glad things are going well and you are feeling good. That is amazing how they "take" your ovaries out through your belly button! A-mazing!
Guys, I know we have gone over this before but please humor me: if I have a bad time on tamox and I want to get a hysterectomy to "close down" the estrogen factory, does that then negate the necessity of tamox? I know some of you have had hysterectomies but I don't know why tamox after a hysterectomy is necessary. Tolerate me and my chemo brain, please!
Goodnight-
0 -
Because I am post total hysterectomy I won't have Tamox but another anti hormonal. We still need the antihormpnals because our bodies make estrogen in places besides the ovaries. In fat I think, but there may be more places. Taking the antihormonals does add percentage to our survival stats. My rads doc says that women are stopping the AI's and some are paying with their lives. He told me inno uncertain terms that when I get to that point to take the medicine and do not stop!
This is my understanding as of today.I hope it sheds a little light.
Ginger
0 -
Yes, that is my understanding too, that other tissues make estrogen (fat) and the anti-hormonals reduce those levels.0
-
Lizzy The reason why Lisa, ckptry, and I (and probably others) are getting regular MUGAs is because we are on herceptin. A known risk of herceptin is heart damage so the standard is to do MUGAs every 3 months or so while on herceptin. Since you are not getting herceptin, that is why regular MUGAs are not standard for you. However, since you were on a chemo drug with a known risk of heart problems, it does seem perfectly reasonable to get a post-chemo MUGA to see how your heart is doing post-chemo. Anyway, I just wanted to clarify that the herceptin is the reason why some of us are getting routine MUGAs. As for Tamox and other anti-hormonals, I agree with Ginger and Omaz. What I have been told by my onc is that if you are pre-menopausal you get Tamox and if you are post-menopausal (either naturally or by surgical means) then you get an AI such as Armidex (not sure on spelling). As they said, there are other estrogen producers in our bodies besides the ovaries so even getting rid of them means you still need to take some kind of anti-hormonal, and as my onc said they may be the biggest weapon in preventing recurrence. My onc actually went ahead and gave me the Tamox prescription at my appointment last week for my last chemo but said to wait on taking it until after rads are finished.
Currently I am waiting for a call from the rad onc to get in and make a plan for rads. I am hoping to get started on those soon, the sooner I get started the sooner I will be finished!
0 -
Lizzy - I just went over that with my doctor. I don't know your age, but I am 41. I'm not doing well on the tamoxifen. I agreed to go back and see her in 2 weeks but I'm NOT going back to the life I had on it, if that's what it means.
She suggested as an alternative having my ovaries out. She brushed it off as if it were nothing --no side effects, but I came home and looked it up. I checked out Wiki - or Mayo -- it is not a big deal post menopause but there are serious consequences if you're my age - it ups the death rate 170% in women under 45 who have this procedure done.
There are serious cardiovascular risks as well as cognitive, osteo, etc., etc. It is different if you are older. After reading that I'm just not willing to do that at this point. In the future? Yes, but not now. Once you have them out, you are put on arimidex or one of those blockers, but not tamox.
I'm at a loss. I don't know what to do. My doctor flipped out on me, but I'm still very scared about the ER incident - she didn't rule out that may not have been a small stroke. She took seven vials of blood to test me for a clotting disorder, which would make me unable to take tamox anyway. I had some pretty serious side effects and my quality of life is worth something too. I wish I were one of those women who could breeze through it - I thought I would be.
0 -
Cal I'm sorry you've been having such a rough time with Tamox. I just wanted to mention that I have read on other threads here that some pre-menopausal women have had their oncs suggest taking injections to shut down the ovaries, like Lupron or Zoladex and then taking Arimidex. I have no idea if the effects of taking something like Lupron or Zoladex long-term are any better or worse than having your ovaries out but it is an alternative to consider. You are in a tough spot, of course we all want to prevent recurrence but quality of life really is important too. I hope that you can come to a decision that you can be at peace with.0
-
(((((Hugs Cal))))))
0 -
She mentioned the Lupron - this is what I found when I researched it: I really just wanted BC To be "done" after chemo -- I hate being in this position.............
In June 2009 the label was changed again to warn about "convulsion" in the post-marketing surveillance. The label shows that 98% of women had adverse events including 65% suffering headache/migraine, 31% depression, 31% insomnia, and 25% Nausea/vomiting. Many other adverse events are listed in the label.
0 -
Cal - did you look into Raloxifene?0
-
jsw I am going to pm you about re excision.0
-
I found this very interesting article - my naturopath put me on a turmeric/green tea blend. I wondered why these two things in conjuction with one another, and Googled it and I found this very interesting information. Sounds like for pre or post menopausal women this is good for breast health! Turmeric has alot of excellent properties!
http://www.healthy.net/scr/Column.aspx?Id=658
Omaz- not sure if raloxifene is an option -when I read about it, I found this, which is very very confusing......
Raloxifene cannot be used to treat invasive breast cancer or to prevent invasive breast cancer from coming back in women who have already had the condition. Raloxifene also cannot be used to decrease the risk of developing non-invasive breast cancer.
0 -
Cal - I didn't realize it was for high risk women only.
Turmeric has a lot of good press as anti-cancer. Check out 'Foods to Fight Cancer' by Beliveau, there is a whole chapter on turmeric. It's really a nice book.
0 -
There's also the website foodforbreastcancer.com Some really good stuff on there - lots of studies cited! Right now I'm just eating tons of cruciferous stuff- broccoli rabe, raw kale shakes, etc., etc. If I'm off the tamox, at least for right now while I get myself back to "normal", then I gotta do all I can in other ways!
0 -
Calamity, I was going to pm you but then realized that we all really need to share our "stuff" if we are going to help one another.
I had a complete hysterectomy at 51 years old. The doc made a mistake regarding huperplasia and told me later. Anyhow, I was always pretty nice but after the surgery I became really nice. Now It is hard to get me really upset about anything .I used to have PMS but no more. I have also felt neutered since the surgery and that does bug me. Perhaps neuter is a better description, as in no drive. I took unopposed estrogen for about 13 more years after the surgery. Is that implicated in BC, sure, I wish I had't taken it. After I went off the estrogen my hair thinned and my skin changed. I have very few wrinkles but my skin terxture changed to coarser. I also lost some brain power once I was off the estrogen. Being without ovaries without estrogen does absolutely have effects on women that seem to be too little recongnized. On the other hand the threat of recurrence would trump my side effects from hysterectomy anyday. Still though, there is a loss, another loss to bear. Sweeping it under the rug won't help.
I hope you get lots of good help deciding how to proceed.
GInger
0 -
Cal: I asked my doctor about removing my ovaries too, and he basically gave me the same answer you got in your research. He said that it sounds like a simple solution, but there are serious consequences to doing so at a younger age, and that it shouldn't be taken lightly. Luckily I am doing really well on the Tamoxifen, so I will just stay on that I guess. I have to tell you though, just as a way of letting you know that you are not alone, that I have been struggling with anxiety issues too. I have been having dizzy spells and episodes of difficulty breathing since finishing radiation. They are not serious enough to impede my quality of life like yours though. I mentioned them to my doctor and he said that they are probably little "panic attacks" and that it is quite common to have these post treatment. He actually told me that many women suffer from a form of post traumatic stress disorder after finishing treatment for breast cancer, especially those who handled the whole process very well. He wanted to prescribe Ativan, but I only have them maybe once or twice a day and they are very brief, maybe a couple of minutes at most, so I am going to hold off on that for now. I did see a counselor who gave me some relaxation and breathing exercises that I could do, and I am going to try to "talk it through" with a counselor at the hospital who specializes in treating cancer patients. So, anyway I just wanted to let you know that you are not alone and you are not "weak", but rather just normal. The counselor told me that this is the "price we pay for being so brave and not complaining".
Lizzy: No snow...a whole week without it! What will we do with all this sunshine? Now if we could only jack up the temperature about 50 degrees!
Has anyone checked into that TaTa Vegas trip?
Okay, back to work now. Talk to you later!
0 -
Oh...I forgot to tell everyone, I am so excited...I slept through the night last night for the first time in what seems like FOREVER. Went to bed at 10:30, woke up at 5:30. Silly I know, but I was soooo excited when I woke up and realizes I had slept that long!
0 -
sptmm I get that panicky feeling too. I find that things that would usually cause me some anxiety really stress me out now, sort of like the straw that broke the camel's back kind of thing. I hate it b/c I'll feel for a few minutes like my heart is racing or it's hard to get enough air. But my onc said that post treatment is usually when the anxiety hits full force. I hope it gets better with time for both of us.
Carolyn
0 -
OK Sisters, some not so good news to share: When they did my ooph on Tuesday, they said they'd be sending the ovaries for biopsy, just as a precaution. He said they looked healthy and this was a precautionary surgery, so no problems expected. In fact, when my doctor called me yesterday, I thought "how sweet he is calling to check on me", I didn't even think he was calling me with bad news. The pathologist had called him and told him that when he cut into my ovaries, there were cancer cells in both of them. It's primary Ovarian cancer; not breast cancer that had spread. I pretty much zoned out after he told me that, I was in such shock. All I remember him saying is that I need another surgery to explore my abdominal area and see if any of that cancer had spread anywhere. I've got an appointment for Feb. 22 with the gyn onc at the cancer center I've been going to. The only other thing I remember specifically is the doctor saying that my life was probably saved by this prophylactic surgery because ovarian cancer is usually not found until it is advanced and finding it this early is good.
So, that's all I know right now. I don't know how I feel about it, I'm still processing this new info and feel mostly disbelief that just when I thought I was nearing the end of the cancer tunnel, I've got this new disease to deal with. Please pray for me and my DH. thanks.
0 -
Lady: I am SO Sorry to hear your news!! I know there is nothing I can say to make you feel better right now, but just know that we are all here for you anytime you need to talk. And I will be praying for the best possible outcome and easiest treatment plan for you!
Debbi
0 -
Oh Lady - I just can't believe it!!!!!0
-
Lady--I am so sorry to hear this news--friggin cancer. The good part is, like your Doc said, it was caught early. Ovarian cancer progresses without symptoms so it is great that they caught it so early. I had gone through a gynecological cancer prior to breast cancer and the if caught really early, they generally don't do any additonal treatment (they get out the cancer and then check to make sure no spread). I had stage1b cervical cancer and had the rad hyst--no additional treatments except for PAP and internal every 4 months. They scanned me more for my cervical cancer than the breast cancer (MRI's, CT scans etc)..that way they can confirm your whole abdominal area. I'm not sure that I am adding any value but know that it sounds like you have a good Doc and they are moving on it. Sending you big hugs.
Just a quick note to the other conversations re: post-treatment anxiety etc. I see a counsellor who helps me talk through my fears and worry. It really does help along with breathing and meditation exercises. She also recommended a book called "Picking up the Pieces"--it is for post-treatment and going forward. Check it out..it is amazing to read as all the fears and worry that we write about here --are there---from other survivors. They provide some good coping skills.
0 -
Lady I am so sorry to hear this news. My thoughts are with you and your DH right now and I am hopeful that this new cancer was caught early enough that you will not need much additional treatment. I don't remember now why you were getting an ooph - were you having any problems or was it to reduce the estrogen in your body post breast cancer? We are all here for you if you want to talk more about this. Big hugs to you and your DH.
Cal That is interesting what you found about the side effects of Lupron. I actually took Lupron during chemo as a means of trying to protect my ovaries so that I may still have the potential to have children in the future (I am 33 and have no children yet). I am a bit embarrassed to admit that I really did not do much research on Lupron, I was only taking it short-term during chemo and I really wanted to do something to try to preserve the chance to have children in the future. Anyway, the only side effects I attributed to it were the hot flashes but I did develop insomnia shortly after starting the Lupron, before starting chemo. I thought the insomnia was just due to all the stress of diagnosis and upcoming chemo and my onc prescribed Ambien, which really helped. But perhaps Lupron was also to blame for my insomnia. At any rate, since I have finished chemo I am no longer taking Lupron either and I'm weaning myself off the Ambien. There are just so many tough choices that come with treatment, it is really frustrating.
0 -
Lady: I am so, so sorry to hear your news. It is absolutely a gift from the ethereal forces that you went and got the ooph this week. I refer to it as "female system" cancer and it is so hard to detect and therefore so lethal, I am just glad you got the ooph. Could they tell if it was contained in your ovaries? I understand you have further testing as they want to be sure but I was wondering if there were any preliminary findings that would indicate it was confined. Hopefully it was confined and you were meant to have the ooph to save your life. Certainly, now that you have had the ooph, a few more tests should tell you if in fact you are going to remain on the cancer highway. It is entirely feasible the ooph took care of it and you are not going to require much, if any, care for that situation going forward. May your next tests reveal the ooph led you out of *those* woods and you are moving on to a different, non-cancer focused path. My thoughts and prayers go out to you and your DH during this tough time. Just rememember not to speculate too much and get lost on a tangent of "what ifs." Just try to relax until you know more.
I don't have such good news: my BIL, who fought lung cancer some 13 years ago, died of a massive heart attack on Tuesday afternoon at the very young age of 50. He was active and in great shape, non-smoker etc... No clue as to what caused the heart attack. Needless to say, it was totally unexpected and my sister is a mess. It is such a travesty. On this note, remember every day is a present and tomorrow is a gift.
I will pop in later with a more comprehensive post-
0 -
Lizzy - so sorry for you and your sister.0
-
I am so sorry for your loss Liz. Prayers and healing to you, your sister and the whole family.
Prayers and healing to you Lady.
0 -
Lizzy: Sorry about your brother in law. So young for something like that. Your quote at the end, I think, are words to live by especially in our "new" reality after BC. I will keep you, your sister, and her family in my prayers as you all go through this difficult time.
Debbi
0 -
sptmm BTW being excited about sleeping through the night is not silly and may you have many more sleepful nights! I too get excited when it happens.0
-
(((lady)))) I am sending you and Dh lots of hugs and prayers. This is so unfair that you have to deal with this. I am so glad you had the ooph and really hoping they caught it early. It sounds like they did. I'm so sorry that you need more surgery.
Lizzy - sorry for your loss
0 -
lady I am technologically impaired to begin with and now with chemo brain ... I never sent a pm before and was going to send you one but for the life of me couldn't figure out how to put a name in the "To" box. Just wanted to say please pm me if there are any questions I can help you with (I was a surgical gyn oncology nurse). I've been home since my son was born (6 years) so some of my info is probably outdated but I'll try to find out whatever I can if you need help.
Carolyn
0 -
Bama I am thinking of you. Hang onto your mds words that it was found early. Hugs going out. libray lil0
