Chemotherapy for Stage IV
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Happy for ya Karen. Control ur path!
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I love my MO! The HemOnc system is built to have the nurses take the problem calls and you have to put up with the same ordinary advice, "Have you tried creams?" of which you can get much better advice on these boards. So i emailed her (she had stopped answering them, she's so busy being an outstanding person who never turns away a patient) But she told me to go ahead and take the remaining decadron she left over.
You guys, maybe i shoulda kept working maybe i have too much time. but any support is so comforting
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Try Secaris Nasal Gel for dry nose problems.
PS Doxil same as doxorubicin and adriamycin. My experience was neutropenia after about 3-5 days for about 3-7 days and then fine until next tx.
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My doctor has prescribed abraxane, caroplaten each week for 3 weeks. I also receive avastin every week. On a monthly basis I receive Xgeva and Fasildox.
Usually the first three days following my chemo I receive Lukine shots and sometimes prokrit shots. Does anyone have advice for best ways of handling the Lukine shots? I find they give me excessive bone and body aches plus spiked fevers.
I've had two treatments of the prescribed chemo and ended up in the hospital for 6 days. I've missed 3 sessions of chemo due to convalescing/recovering from side effects.
Is this a typical reaction? Does it get any easier? My doctor wants me to have 18 treatments. Any advise to get through the treatments (and side effects) easier?
Best Regards,
american Bedu
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Bedu. Wow, you are getting some chemo! I looked for your background to see what they are trying to hit so hard. Certainly the younger you are the more aggressive, in my experience.
Abraxane every week was my MO's choice to start and said take it as long as I could stand it. Halted with neutrophils
"In hospital" is starting to intrigue me. Do you think we can start a thread to identify why and when we get hospitalized? I'm interested to know Spent less than 24 hours in with a 100% occluded vein from mid-arm to neck. Boggles the mind.
Please keep talking, we can all understand your trip better and it helps everyone. Warm hugs, kathy
Your doc is at least telling you the goal for # of doses I think they may have high expectations to push you to the edge here. Other sisters have more experience with various regimens.0 -
TXKaren, I don't know if I should be telling you this, since it is sort of one of those mixed messages like the jokes Do you want to hear the good news or the bad news first? Abraxane/Avastin was the chemo combo that just about did me in.....I had every side effect imaginable, all the ones on the list and then some. It has been two years July 22, (I think) that I quit it....yes, I quit....it was at the point where I really just did not feel I could handle any more. What really was the deciding factor was when the neuropathy was going into my hands....I was already having problems doing things because of the fingernails, but they were not totally numb and I certainly could not have dealt with that since I insisted on working the entire time. I had extreme edema to the point where I could not always get shoes on, my eyes were tearing constantly and after it was all over since I had not really realized what was going on and my onco did not tell me (I learned from another patient that it was blocked tear ducts) I was at the point where my tear ducts simply could not be opened and I had to have actual surgery with stints put in. So far as my nails go the thumb nails are the only ones that are not back to normal yet, but they are almost there and I have been told the growth is stunted....my toenails, Well, we won't talk about those...they are never going to recover....But you know what I don't really care about that, I can walk and that is what is important. And my eyes are OK now although my eyelashes did not grow back normal, a lot of them grow inward, so I go every few weeks and have eyelashes plucked out. My hair grew back nicely....I kept it gray and everyone loved it. I had to stay on medication for the edema, but for the most part as long as I take it,, I don't have any swelling and I was left with acid relux and heartburn, but nexium takes care of that. And the neuropathy did go away.....on some it does not, but on me it did. The avastin caused me to have nose bleeds and I sounded congested all the time....people were always asking Do you have a cold? Oh and the stuff I blew out of my nose, unbelievable. As gross as this may sound, I was just so amazed by what came out, it was like chunks of stuff, that I wanted to run around and say Look at this. However, I managed to restrain myself and did not share. Sounds pretty horrible, huh? Well, I lasted for 22 treatments....got the abraxane weekly and the avastin every other time. Then I said No more and that was when I went to MDAnderson for an opinion and the onco there said I showed extreme toxicity to abraxane and he would not recommend it for me again unless I had nine toes in the ground. NOW THE GOOD NEWS.......it worked for me better than any chemo I have been on....shrunk the tumors in my liver to the point where where were very small, kept the bone mets stable, got rid of the area in my lung, and there was no progression anywhere else the entire time I was on it. IT WORKED! Nothing has worked for me since so I am wondering if I should have stayed on it and I will never know, but I agree with the onco at MDA, it was toxic for me and I do not think I could have lasted much longer that way. A lot of women have the nail problems with taxol family drugs, but mine were infected and smelled and oozed and it was just horrible. Now the odd thing, is that I know women on these threads and also in the treatment room who have been on both avastin and abraxane for years and they are getting good results and their side effects are not really all that bad.....there is one woman and she did not even lose her hair and she has no nail issues....I find that absolutely amazing, but it just goes to show how we are all different. I do think I was allergic to it....the lst time I had it my neck broke out in a red rash and after that they always gave me something in the premed to counteract that. In spite of SEs I am glad I did it because it is now two years later and I am still here and now my liver tumors are BIG so had I not done the Abraxane and had small tumors when I quit it, I hate to think of where I would be today....if I would be today. I know there has been a big stink over the avastin, whether it works and if they will continue to give it since it did not get FDA approval, but I know many women who are on it and they feel it is really helping them....also I know someone who just started treatment a few months ago and her onco was not going to use it and she begged for it because she is one who does research and they got it approved for her. The point is we are all different and I hope you are one of the ones who does not have bad SEs with it, but most of all I hope it works for you. I have found that when a treatment works, it is much easier to accept the SEs. The treatments I have done since then did not have very many bad SEs at all and they really did not work....right now I am on halaven and my neuropathy is coming back and I have lost a lot of hair (although it is just thin, not gone) and I get a lot of strange muscle spasms....my CA27/29 went down a little when we tested it last month (I think I have about a record there...was all the way up to 2,709, although AmyJo told me hers was higher) but we won't know for sure what is going on until the 18th when I have a CAT scan. Anyway, I was not sure if I sould say anything to you or not, but decided if it was me I would want to hear both pros and cons....for me, and remember we do not all react the same, Abraxane was an extremely rough treatment, BUT IT WORKED. We did scans twice while I was on it and each time they showed more improvement.
Bedu......I am not familiar with those injections you get. I do get Xgeva monthly and did faslodex until the hormonals stopped working for me. And of course above I wrote to Karen about the Abraxane. I don't think I know of anyone getting Avastin weekly.....thought it was one of those you get every other week. Do you think it is the chemo or the shots that send you to the hospital?....do you collapse or is the pain just so bad you can't stand it or it is the fever.....what makes them put you in the hospital? Are lukine shots like nupogen? I get neulasta the day after my 2nd chemo treatment ( this one is three week cycles) and the lst time I felt worse than bad.....had a fever, went to bed and stayed there for almost two days because every single part of my body ached and I was not sure if it was bone or muscle or both. I found out later that claritin helps....sounds crazy, but I did it and it did help. I do not know if it is the fact it is an antihistamine and it sort of works as an anti-inflammatory or what, but it really did work. I take a claritin 2 hrs before my neulasta shot and then again 3 hrs after....its a double dose of claritin, but I have seasonal allergies anyway so it didn't hurt anything. I also have heard of some women taking tylenol to help with the fever and aches.
KLo...To work or not to work, that is a good question.....I chose to work and still am, but have an appt to go find out about SSdisability and people are telling me that in spite of my diagnosis the fact I have been terminal for 13 yrs and am still going is going to work against me. When I went in two years ago the woman I talked to pretty much told me for sure I would be approved, but I didn't want to quit. Now I want to travel and do a lot of things and think it is time to stop putting off til tomorrow and finally got a new passport and want to use it. I will come out much better on the disability than if I get the regular SS when I am 62 which is not that far off, But there is no way I can work until I am 66 or 70 or however old it is they want you to work until to get the maximum benefit. The problem is I actually like my job and have always felt working is good therapy for me, but time is important also and I feel like I am running out of it and will regret it if I don't start doing these things that have always been on my list of Someday I am going to do such and such or SomeDay I am going to go.....
I will be back to check on everyone. Am saying prayers and have high hopes that you all will do well on your chosen treatments.
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Maybe I can't wait for you to travel please get that favorite trip going n report soon!!
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Well, so far my only trip planned is to Shell Knob, Mo where a bunch of us BCO women are going to get together at my Uncle's former home on Table Rock Lake in Sept.....that should be a lot of fun, but I want to go to Brugges because of the pics socalledLisa posted when she was on her trip and I also want to go back to Switzerland and Ireland....and heck, I have never been to the New England states and in spite of the fact I am allergic to shell fish, I have always wanted to go to a clam bake. So I have quite a list.....plus there are women on these threads who live all sorts of neat places....did any of you know Anna who is in Crete, I want to visit her and then go on to see a classmate who is in Macedonia. I never told you, but I love that picture of your dog under the covers.
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Bedu. I'm one of those that gets Abraxane with minimal SEs (so far). I had AC x 4 first and my hair fell out. It's growing back now, although very slowly . I get it weekly x 3 with one week off. I'm scheduled for my last treatment of my 4th round this week. I also get zometa monthly and Lupron every 3 months.
So far my platelet count has been hit hardest (almost to the point of missing treatments) with my red and white counts lower than normal range but neither needing any treatment (transfusion/neulasta).
Like Marybe, it's working for me (see my bio for details). I'm scheduled for surgery in August so will be stopping soon to let counts recover first. I'm a little nervous about stopping but am looking forward to surgery. Plus my nails look like they might be starting to show effects (brittle/ridgy) so they'll get some recovery time too.
Good luck with your treatments - looks like you're throwing the kitchen sink at it.0 -
Reesie, bless your heart thtas the full Abraxane schedule. Living in the clinic chair much? The infusion is fast but takes a time to retrieve at our place. I have to say, I like my nails better since stopping Abraxane, but the skin on Doxil is ridiculous.
They said at my age the oopherectomy would not make much difference but you must be cranking out some hormones from those babies, huh? My BFF who had all the early BC trips along with me, we were twins, had the ooph and BMX and has not developed further disease. So, I hope that makes a difference in your life, darlin.
Umm, clam bake! Please let us live vicariously thru your trips, marybe.
Re dog, he is our empty nest dog. And our son officially moved out yesterday, really really needed to and we are so happy. He will find independence for the first time in 21 years and we can be adult friends!
Much love to all, k0 -
But, Kathy I have not gone anywhere yet!!....so far it's still all in my head.
My nails did not get brittle and dry on abraxane, they turned colors at lst....looked like I smoked two packs a day, very yellow and then they were black and purple and got loose and that was when they grew this fungus like stuff under them and got infected. I do not think it was a normal reaction at all. And the nail on top of the fungus....hard as a rock, so tough it is difficult to clip them. I have pics of all this stuff since I found it fascinating....took a lot of nail pics as well as my ankles hanging over my shoes. I guess I should start taking pics of my crepe paper skin since that is the big issue now. I show people and have noted that a lot of my friends don't have that great of looking arms either, but this is more exaggerated and extreme than just being 60....however most people don't acknowledge it and will say something like Oh, it's not that bad and of course there is my onco and all he does is nod when I show him this stuff. But then there is dear old dad and when I was showing him last night, he said Boy, it really looks worse than mine doesn't it? Gotta love the man for his honesty. But he added, it is still really soft. I got really soft skin from my mother, but at this point, who cares? I mean, who would want to touch it?
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I appreciate so much hearing from everyone and their experiences. It sure makes me feel less alone. My doctor always tells me I am anything but a textbook case! My onco has his own institute where he treats patients and continues research. He was formerly a consultant at MDA before establishing his own facility outside of Charlotte, NC.
I guess I should have mentioned this is my 2nd go round with chemo. Last November I had TAC. Again 2nd treatment put me in the hospital neutrophenic. In spite of 6 sessions of TAC when I had a scan last August it was to find the cancer was still persistent. That was when I was put on Avastin and Zometa but in May was told it was time to resume chemo, hence now I'm on Abraxine and Carboplatin. My dr has decided to put me on Avastin weekly with no breaks. Honestly, I'm glad to hear about the "gunky" nose as I am having that too. The zometa was stopped in exchange for Xgevia which cut down on some fo the bone aches.
The lupine shots I receive are similar to the nutropine (sp?) shots. I think the shots get me down more than much else. They make me achy and I spike fevers while receiving them.
Has anyone else had experience with prokit shots? I did not have them last chemo but they are too raise the blood counts.
I like knowing the positive and negative side effects as it helps me prepare. Are there foods which are more easily tolerable or ones to avoid? I've been keeping a very bland diet since the hospitalization so it seems like all I dream about now is food I can't have! (smile)
I still have neuropathy from my first chemo. I stopped buying anything which requires buttoning. Thankfully I can still use my keyboard. In regards to the feet, I have found that 'Alegria' brand shoes give me the most comfort and balance.
It is so good to chat with others here who understand.
Blessings to All,
Bedu
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I've been on Faslodex for a year. My oncologist said if my scans look worse this month he is going to start me on oral chemo, and that "it is well-tolerated and your hair doesn't fall out." The nurse practitoner said I would be two weeks on, one week off. I don't know what kind of oral chemo it is. Has anyone had experience with oral chemo? What were the side effects for you?
Thank you!
Calico
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There are quite a few oral chemos, methotrexate is one and Xeloda is another. I have not done Xeloda, but know several women who have and they have not had bad SEs with it....you can get hand foot syndrome where your hands and feet peel, but the women I know on it, did Not get that.
Bedu, How are you doing on the abraxane?.....that was the one that was really hard on me, but it worked. I got it weekly. Some people seem to tolerate it extremely well, but I just couldn't handle the SEs. I am also getting Xgeva with no SEs. I do not get the shot you get, but get neulasta to rebuild my white count....I take claritin before the injection and also after at the advice of women on the boards and it helped a lot with SEs....the lst time it was like getting the flu, elevated temp and ached all over.
The chemo I am doing now, halaven, has not been a bad one at all. I have really thin hair, but it's hanging in there and I think it has stopped coming out....constipation, but I have that with most chemo and slight neuropathy, The reason I don't think it is working is because my CA 27.29 really jumped up, but I will know more after I get scan results next week. One good thing is that there are a lot of chemos out there.
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I start xeloda this week if bcbs comes thru. It will be nice to be in control, taking it at home. It occurs to me that people are most sympathetic A. When you lose your hair, B when you have to have IV chemo and C if you get thin. Well, I have a head of thick salt n pepper curls, i'm fat as a tick, and will be taking pills. So, perfectly normal! And that's a relief really. Please let me be the one who does not get HFS on xeloda. K
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Me again- here's a general question about oncologists and chemo: in your experience, do they seem to have a list they work down, e.g., abraxane, adriamycin, etc, and never go back to one that's already been tried? My doc has mentioned the drugs she had inmind for me, she says it casually, but I think she has a definite algorhythm in mind. thx
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When my bc spread to bones my onc told me there was something like a 14% chance the cancer, while still from the original breast cancer, did not have the same characteristics (ER +, Her2-, etc) Unfortunately they tried but could not biopsy my bones-just couldn't get a sample. So we proceeded as if it had the same characteristics. I have had chemo and hormone treatment. Tumor markers went down to 53 but now up to 280 again.
I hope things are going well for you. Keep on keeping on ! Make every day the best it can be. God bless.
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I do think there is some sort of an order that they follow....seems like the lst treatment for BC usually includes adriamycin (which I never had because I didn't get chemo to start with) along with taxol or taxotere, one of the taxol family. And it seems to me like they do the AIs before chemo, but I could be wrong here.....and I also know women who get some sort of Al along with chemo. Once I chemo quits working, you don't use it again, but if you stop a chemo and it is still working, you can go back to it. I could go back to abraxane, but my onco has not suggested it yet and to tell the truth I don't know if Iwould want to given the SEs I had before.
I know what you mean about looking healthy.....I get it all the time, But you look so good! Yeh, right, but I am far from good. Not that I want to look sick....then you get that look of pity when you meet people.
Bliss....tumor markers alone are not used for diagnosis, but in my case they have always been quite accurate as an indication my cancer is progressing. Have you had any scans lately? There is also a cell search test that they do and they seem to put more emphasis on that that the tumor markers, CA 27.29.
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I have noticed that I have not posted since may. That would have been the time I chose to stop abraxane/avastin and start tamoxifen. My CA 15-3 has doubled since then form 30 to 60. My tumor marker is also a very good indication of progression. I had good success with the abaxane and avastin but do it two time in a row, will probably start something else. They moved a CT scan up by a week and will have a first chemo in the last week of July. Not sure what it will be. They want to see what the scan says.
I have another problem though which is how we discovered the turmor marker going up because I insisted on blood work. My platlets have not been normal since I stopped chemo. In the 1 1/2 years I had been on chemo, they would be normal and then low, then normal then low. Since my last chemo 2 1/2 months ago, my platlets have gone from 140, 72, 60, 56. Any one else had a problem once they stopped chemo? The are doing some special blood test next week that is for the platlets. I cannot remember the name. Was just wondering.
Read through the last three pages of post or most of them. I have also had good success with the abraxane/avastin. I am going to try something new and go back to that if need be. This will be my 4th time of being on chemo when I start next week. What a bummer. I thought a year inbetween was good but 2 1/2 months. It will be interesting to see what hormone treatment I get after this.
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Poohfan, You know how they say misery loves company, well I am sort of comforted to know there was someone besides me who chose to stop a chemo that was working. I hope they don't recommend abraxane/avastin for me again (actually avastin is no longer approved is it?..so it might take some doing to get back on it) because I would have to think long and hard before going back on it. I still go have my eyelashes plucked at least once a month because they grew back going inward after the abraxane. Of course now they are falling out because of halaven so guess that is sort of a moot point. I wish the hormal stuff still worked for me, but it doesn't.
Kathy I will be praying you aren't the one to get the HFS....I know quite a few who did not, but have found that my onco likes to tell me the worst just in case. He told me I would not be able to work on halaven and I still am. They don't know everything. One thing I know about myself, instead of asking Is this going to work?, I ask What's it going to do to me?, meaning SEs.
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Ty Marybe.
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Marybe: I reallly appreciated your post about the Avastin/Abraxane experience. Have had my third dose, and really not much difference between it and the Navelbine so far as far as S/E's. I am hoping that I can do it longer than the 3 cycles that the Navelbine lasted before progression resumed rapidly. I would love to have several months PF. This is my fourth chemo since recurrence in December, so this is scary that it's not responding very well. I'm sorry you had such a time with it, but yes, we are all different, and some of us have natural 'reactions' that others don't. I have a friend with ovarian ca that has a life threatening reaction to all the 'xanes' and ends up with cardiac failure. She's running out of options, sadly. At least you did stay on the treatment for a good while before it just got to be too much, and I am praying that the Halaven will work for you and that the elevated markers were a glitch.
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Calico: I did Xeloda for awhile; not bad (made food taste funny, but many of the chemo's do for me, I've found). The Hand/Foot syndrome (red, peeling skin) is what to look out for, but I avoided all hot water (because I have a wonderful hubby who did my dishes, etc!) and I didn't have any problem. Use lots of very good moisturizing lotion, like Curel or Gold Bond Intensive. Also, constipation was a problem, but I have that with all the chemo's I've done. Taking pills was easier than getting hooked up to IV all the time !! But, I wasn't on Xeloda very long either; it didn't work on me.
All: There is a "list" of standard therapies for most of the cancers; dependent upon what type. They are the 'proven effective' in typical order of effectiveness. For example, the first line, primary chemo for most all types of BC is Adriamycin/Cytoxin. Herceptin is for HER+, Tamoxifen for ER+, etc. Dr. Joyce O'Shaunessey made me a list of the next four agents/combo's to try when I saw here a few weeks ago, before leaping into clinical trials of unproven (even though she is a lead researcher on most of these!). She said that it's best to try the 'proven' therapies first. I'm hoping that this one (Avastin/Abraxane) will work for awhile. My insurance has not denied payment for Avastin yet.... as long as medicaid and medicare are still paying for it, they will too. Will see when the final ruling from the lead judge comes out in August what will happen then, but even then I'm being told by my nurse advocate (I'm with Aetna) that if they have been covering it, they will probably continue to. It will be 'new' people they will deny payment for.
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Thanks, all, I relapsed after having gone through all the traditional IV chemos/radiation, etc. Had a few years of peace before it came back. Faslodex has been keeping my tumor markers down some, but the lymph node behind the sternum is still growing. I'm not sure at what point the onc will tlhrow in the towel and pull the trigger on oral chemo. He said he would if my scan in 2 weeks was "worse", but he didn't define how much worser it would have to be. Said he'd have to look at the "gestalt" of everything. Love it when they use big words like that.
Let's all stay alive long enough to see a full-blown cure, OK?
xoxoxo
Texas Calico (a San Antonio cat)
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You are right there, Cat !! Dr. O'Shaunessey told me that UT/San Antonio would be starting some novel new clinical trials in the next few months... new stuff reported at the breast cancer symposium. Keep in touch with them and see what may be coming out.... I certainly am !!
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Well, shoot, Texas Karen, I'm a California Cat now, but was born and raised in S.A. My mom and other family are still there. I'd appreciate your letting us know what they're up to. Maybe I'll just mosey on home and get some treatment!
xoxoxo
Calico
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My oncologist told me he has a structured plan for me in regards to which chemos he would try when. The Abraxane/Taxol is working but I'm still getting slammed with side effects. I have low platelets and the mouth/throat ulcers. I have lost all my hair, gained weight and now walk like a duck.
Again, though the worse side effect still comes from the Lukine shots which are given to boost white counts. My doctor wants me to have chemo one time per week for 3 weeks with one week off. We'll see...I had 2 sessions, misssed 5, had my third and tomorrow I'm supposed to get another session but it will all depend on the blood counts.
I live alone and find myself feeling "woozy" a lot from the meds.
In regards to Avastin, I have heard that if you have been on Avastin you should be grandfathered in to it. I also receive weekly Avastin.
Best to all,
Bedu
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In my opinion the halaven was a failure....today I picked up the CAT scan report and all of the lesions in the liver have increased in size....the largest which was 6.2 X 5.9 in April is now 7.2 X 6.6 cm. So the bone scan may have showed no changes or increase in mets, but the liver is what I am worried about so this is not good news. I won't see the onco until next Tues. but am assuming he will agree that it is not working especially after that big jump in tumor markers. Regardless of what he says I plan on going to get an opinion elsewhere since this is the 3rd chemo in a row to fail. The big question will be Where to next?
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Oh Marybe, I'm so sorry to hear this. Hope you get a good plan in place soon (sorry I can't help with the Where to next question).
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Dear Marybe,
I am so proud of your attitude. You can't win if you quit, can you?
I see where you are coming from with this particular drug. Have you ever repeated a drug? I wish they would try going back to the big guns, slighter larger dose.
I hope you can sleep well tonight with or without help. And remember how small millimeters are. (Not to play down your concern)
With you,
Kathy
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