Afinitor/Aromasin
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I have been off the board for 3 weeks. The oral pills of AA enabled me to travel, so I took an overseas trip to my birth place to celebrate a mass for my mom’s first anniversary after death. Everything went well, I hiked, eat great foods and met with friends, until on the historical train trip down from the forest, I started feeling the familiar nagging left pain. Held on until 10 that night, I still ended in the ER. When doctor confirmed it’s small bowel obstruction (3D time), and a surgeon that would not be able to assess me until the next morning. With my return flight only 24 hours away, and with doctor’s permission to continue treatment in the US, I checked out the ER. My bowel did reverse a bit right before my flight, and I could hardly remember how I traveled the next 24 hours on the road. My hubby flew to SFO to help me to get home. Had been back to ER here just to make sure the obstruction is released, and have been fighting with belly and stomach pains for a week now.
I have a check up with Onc on 12/13, and I feel well on AA treatment. Hopefully the bowel obstruction will not negate the effectiveness of AA.
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wow! Cling! That sounds dramatic. I am glad you got to travel and had such a good trip until the drama at the end. What caused the bowel obstruction? Are you well now?
What country did you visit?
I am still battling a cold , it is fine- I just hope it doesn’t increase my TMs on Monday —> that will lead to a scan etc- and I want a nice Christmas.
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I'm just stopping in to complain. Ugh this fatigue. It is 9:30 AM and I am feeling as if I want to get back into bed. Starting week 8 tomorrow. I'll stick this out I think but I really have to force myself to get up and get moving. eta just checked my temp and it's 100.2 Must be a virus! Back to bed for me!
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Moom- my cold is getting better which helps with fatigue. also the more I sit around the more fatigue I get. hmm. coffee? yep! and going outside and taking a walk really helps me. I realize that your climate is much more challenging than mine. I hope you are better soon.
Hang in there- it gets better.
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moomala,
Hang in there, the fatigue does get more manageable. Of course, having a fever is also exhausting! Hydrate and rest!
Feel better!
Stacey
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I’m in the hospital for a few days dx with pneumonia last night. Ughhh. I wanna go home
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moomala, hospital is not fun, but it is necessary to provide the services you need now. Be patient and get well soon.
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Moomala, I am sorry that you are sick and in the hospital, but I am relieved to know that you are in a place where you will be taken care of. Relax, recover, and get your strength back. I know that hospitals are not fun places to be, and hopefully you will be home soon. Of course, I know that hospitals are not a good place to get rest, but try to rest when you can.
I just started week 5 of A/A. Thank you to everyone who confirmed that you also had elevated liver tests when you started this treatment. It put my mind at ease. I am still feeling well, but I have been experiencing bone and joint pain in my legs for the past several days. I hope it's a temporary situation. I know I shouldn't complain because many people have far worse issues. I guess I have become a bit of a wimp, but I have SO MUCH to do.Nkb, the quilts I make are simple designs. I will post some pictures for you. I would love to see yours. I am sure you will put me to shame, but I can take it. I do love seeing others' work. The purple/white yellow quilt is twin size. The green one is full size, and it was quite bulky for my machine. I know that the granddaughter who will receive the purple quilt will appreciate it. I think the other granddaughter will, too, but we shall see. I have written notes that I will include in the boxes. I think they will earn me some nice warm hugs.
I hope everyone enjoys the weekend
Hugs and prayers from, Lynne
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Moomala
Oh no! Well this helps explain the fever and unrelenting fatigue. I hope you are already beginning to feel better!
Best wishes for a speedy recovery so you can blow that hospital bed!
Sending you a big hug!
Stacey
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50’s Girl,
The quilts are beautiful! You made them?! I am in awe.
WOW
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moomala- so sorry that you got pneumonia- no wonder you felt so bad. I hope that you have a rapid recovery and get the heck out of there! I still have a wheezy cough- but, think over all I am slowly getting better I keep trying to remember what a bad cold was like pre- cancer years to reassure myself
50s girl- the quilts are lovely! Be sure to embroider your name and year on the back or make a label so memories are preserved. I am doing all sorts of different types of quilts - currently working on a Japanese style one with mostly appliqué- the directions are in French- so have been winging it- but, just got together with a friend who speaks French who translated for me. Was a lot of fun to hear the directions. I’ll send a few pictures soon.
Lots of rain here- which we need.
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Moomala, I have been thinking of you and hoped you had been able to post an update. I know it is difficult to post from a hospital bed, and I am sure you are concentrating on your treatments and recovery. You remain in my thoughts.Sbaaronson, Thank you for your kind words. I am an expert quilter by any means, but it gives me pleasure to make quilts and give them to people.Nkb, I laughed when I read about the directions being in French. I am sure the quilt will be beautiful. Appliqué is not my strength.. I think it is because I become frustrated with my lack of skill. I do have labels on the back of the quilts I made. I had not thought of adding the year,, but I will do that tomorrow before I wrap them. Thank you for the suggestion. I made baby quilts for each of my grandchildren when they were born. i don’t know if their parents kept most of them or tossed them out. I was thrilled to see my youngest granddaughters who are 5 and almost 4 carrying their baby quilts with them when they went to their brother’s soccer game last fall. I told them that I recognized those quilts, and in unison they said “You made them, Nona.” I was happy that they knew where they had come from. The quilts color were a tiny bit faded (due to use, yay!) but were in good shape and holding up well. They kept the world nice and warm on that chilly fall afternoon.This bone and joint pain in my legs is beginning to drive be crazy.Hugs and prayers to all from, Lynne0
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I'm home from the hospital hurray! It was only two nights but it seemed like forever. I feel so much more relaxed at home. I was told to take the week off work. Hurray for that too! Added to Christmas break I have three weeks off. Wheee! I'm self-employed and don't get paid if I don't work so that's not so wheee but it'll have to work out.
My tumor markers are up. I had a CT angio Thursday night and they think they see some progression in my lung. My MO visited me this morning in the hospital and said that she is absolutely recommending finishing the 12 week protocol before scanning because the progression is so subtle it's still sort of a maybe at this point. ` But she's preparing me to move to Piqray by doing the test for mutation now. (insert a few swear words) Not that AA has been wonderful. My glucose level was 230 the other day. But I'm sticking it out until MO says it's time to switch. And setting it aside so I can recover and get through the holidays and stuff.I would love to be more crafty. The quilts are gorgeous!
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moomala- I am so happy that you are home! hospitals are just not comfortable. Does your state have some sort of disability program for when you have to take time off for medical stuff? I agree with you about not jumping ship too quickly. You can always follow the Afinitor with the Piqray- piqray looks to me like it has more side effects and tons of blood sugar issues, rash and hair thinning. while, I would go to that when Afinitor fails me which may be soon if I had the mutation- I am not super excited about it, so I hope you get more time on Afinitor.
The first quilt picture is the first 3 squares of the Japanese appliqué quilt with French directions. there are 6 squares all together, they get more complicated as you go. but, my friend told me what the directions said so, I think I can do it. the second picture is based on a Freddy Moran quilt- she is an 88 year old who is so into color- the crazy colors were
way out of my comfort zone, but, lots of fun.
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I guess that I don't know how to put two pictures on one post.
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Moomala, WOOHOO! I am glad that you are home. Now make sure you take it easy for a while. I have never had pneumonia, but others have told me that it takes time for your strength and energy to return. Don’t rush things. My MO has mentioned Piqray to me, too, but I am a bit hesitant to try it. It probably isn’t as bad as it sounds.
Nkb, Your quilts are beautiful. You are very talented. Thanks for posting the pictures.
Hugs and prayers from, Lynne
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I am off A/A for the next week. The leg pain was taking over my life. I could not sleep more than a few hours at night. I could not do normal functions during the day. QOL was going downhill. I tried Tylenol for a week. It took the edge off but not more than that. I was worried about my liver. I called MO’s office and was prescribed 5 days of Prednisone. It did nothing to help. I have now been told to stop A/A for a week to confirm that this is from Aromasin as they suspect. Of course, my MO is on vacation. Thank goodness for all the backup.
Hugs and prayers from, Lynne
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Lynne that stinks. I have leg pain from Aromasin too but mine is right down the fronts of my shins and occasionally my hips and knees. You are NOT a wimp! You are taking a strong drug! Also if you are taking Tylenol you should expect your liver enzymes to jump around a little. I almost never take tylenol because that is known to mess with elevated liver enzymes, but even still my liver enzymes took a pretty big jump this week. I don't want to downplay any of your worries because I have worries of my own that would make me call the MO too. But just to set your mind at ease while you are off the drug. I stayed on Aromasin but was off Afinitor for two days while I was in the hospital last weekend. That shin pain never went anywhere. So my money's on the Aromasin.
I'm glad they have you off it.
I'm doing a bit better. Taking things super easy and slow. Getting plenty of naps and watching tons of tv. I hate sitting around so I make a point to get up every hour or two and do a chore or something for 15 mins. Next week hopefully I will be up more. My PCP scared me about this pneumonia and said I HAVE to take this rest time. The exhaustion I was feeling the last few weeks is definitely better. I'm still tired in the afternoons. Still have a dry cough. I imagine between Afinitor and pneumonia I'll feel like that for awhile. Our annual Christmas Eve dinner has been cancelled. PCP said even if I didn't do any of the work, just the socializing is too much plus being around people who might be sick etc etc. I'm going to miss my grandkids sooooo much this Christmas. DH and I will have a quiet Christmas at home and we are looking quite forward to this! I reached the end of A/A week 8 so i stopped the mouth rinse. Yay
Even though I am having a harder time on AA then I/L I'd still rather stay on it than move to something new. I'm used to it now and 'the devil you know...'
Cling? Angie? You two haven't updated from your previous posts and I was thinking about you both today. Big hugs.
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After this crappy few weeks with the tooth abscess and the pneumonia and daily D, I was happy this morning to see in my portal that CEA and CA27.29 are both down this month. Not huge mind you - about a 5 percent decrease - but given that I'm recovering from pneumonia and missed two days of Afinitor earlier this week I'll take it as a win. I needed some good news. Phew!
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Moomala, thanks for the big hug! Hope you recover from your pneumonia soon.
I met with Onc on Monday, the CT report did not show any improvement, but I told Onc again that my 50th reunion plan in April and another trip abroad ( I was diagnosed a few days before my 40th reunion, and insisted any treatment would start only after the reunion). I told her that even if the next CT in March does not look good, I will not change treatment until May. She said if that’s the way I want, we may just delay the CT until May. So, I will be on AA until at least mid May. I do feel AA is working, few side effects (mouth sore only pops up one at a time!), the ascites from looking like 6 months pregnant down to 3 months! And my never accurate tumor marker even decreases two months in a row! At the end of Xeloda and before starting AA at the end of September, the TM shot up from 2600+ to 3600+, then with AA, it went down to 3200 in October, and 2700 in November. I do hope AA will put me in a holding pattern longer than other treatment, that’s all a stage IV patient can hope for.My main worry now is how to get my appetite and weight up from the last small bowel obstruction effect. I have lost 20 lbs from start of AA, and the recent small bowel obstruction certainly made it worse weight wise.
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50sgirl, hope the leg pain was indeed caused by Aromasin. Why would doctors stop AA instead of justthe suspected Aromasin?
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Cling, actually they did stop only the Aromasin. I mistyped earlier. They also gave me something to help with the pain for now. I took a pill before I went to bed last night. It was the first time in two weeks that I had a decent night’s sleep. What a difference sleep can make! You have had a rough time. It is good that you have an MO who listens to you and takes your wishes into consideration. It is your life after all, and you know what is best for you. Is there anything your MO can do to increase your appetite, or does she think that it will improve without intervention?
Moomala, it is always good to see tumor markers decrease even if it’s 5%. Mine were stable at my last visit, and I will take that for now. I would love to see them decrease, of course.
Lynne
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Has anyone had elevated liver enzymes caused by the AA?
I am finishing my 3 mo and the last lab showed elevated numbers.
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Hi Leeee,
My liver enzymes have always been slightly elevated since as far back as i can remember but I am in week 9 of AA and they jump up, down and all-around! I think a few of us have this issue. I was hospitalized last weekend for pneumonia and my LE's were pretty close to normal (for me). I had blood work this last Thursday and they'd jumped a good bit in just six days.
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Hi Leee,
My liver enzymes were elevated during the first few months but came down.
Best
Stacey
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My liver enzymes have been normal. On I/f Occasionally the bili was 1.5.
50sgirl- the AI definitely give me joint pains and stiffness. I do lots of yoga and take 600 mg if motrin before bed. I don’t have the severe leg cramps I had with Ibrance tho.
Any decrease in TMs is a win for me! When I was off Afinitor for 2 weeks and on antibiotics they went up 25%- now they are down a little- if they don’t keep falling I will have another PET. I’m on my 10th month- hope it keeps working.
The gang is all home at my house- so fun fun fun chaos and mess.
Happy serene days to all
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Hi everyone,
I just want to introduce myself as a new member to the A/A group. Here is a short information on the reasons for moving on from I/L (sorry for cross-posting):
After having done great on I/L for 2 years, I started having increasing pain in my lower back, fever flashes every few weeks, I lost my appetite (lost 15 pounds in 8 weeks) and - worst of all - lost sensitivity in my butt and back of my thigh. All of this happened in only 10 weeks. When pain became unbearable with OTC pain killers, I went into the hospital. They put me on opioids and performed an MRI of my whole back. It turned out that I have a met in S1/S2 which grew into the spinal channel (sorry, I do not know the correct word in English) and compresses the nerve roots. Thank goodness that they did an MRI, because in my August CT the met could not be seen at all, neither could it be seen in the CT they took 3 days after the MRI! Additionally, it turned out that my whole spine looks quite worse on the MRI. It appears that my MO was kind of blind to what was going on in my body. And she ignored me telling her about pain and everything, because to her I was fine. BTW, it turned out that my CA15-3 increased from 35 (08/19) to 55 (early 12/19), and my CEA from 1.9 to 7.1. Unfortunately, they only do tumour markers before staging, because they are having bad experience with people getting crazy about non-telling marker figures. Well, in my case the figures would have been telling...
Well, I am trying not to be too angry or to blame my MO. I appears that it is rather unusual that bone mets cannot be seen in CT. At least, they now decided that I will get surgery to my spine to remove the met part compressing my nerve roots ... plus radiation 6 weeks later. And they already put me on Exemestan/Everolimus, although I need to wait with the Everolimus until wound healing of the surgery is fine. They will also use the met specimen to check why Ibrance failed on it. I hope that things - especially pain - will settle again after surgery and that my new meds will give me many good months.
Sorry for my poor English, but I am no native speaker as I am from Germany. But BCO is probably the best breast cancer forum world-wide and since I have a scientific background, information is much more appreciated than the conveniency of talking in my mother language.
BTW, I am 43 years old and a mother of 2 kids (aged 9 and 7). I got my dx in 09/17, which was already stage iv with bone mets. I had no surgery but my primary tumour and the enlarged nodes completely resolved under I/L. I used to work again part-time from 06/18 until earlý December, when my pain became too bad. If I will be able to work again depends on how things will develop.
Best regards,
Netta
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Leee, I also had elevated liver enzymes when I started on A/A. My MO thinks it is from the medication and will go back down. Time will tell.
Nkb, Enjoy the time you have you family home. It can get crazy, but I bet you spend a lot of time smiling. I could tolerate the joint pain and stiffness, but the bone pain was more than Tylenol could handle. It felt like someone had kicked me in multiple places on my shins then was pressing on those places as hard as possible. Unfortunately, I am allergic to Ibuprofen and cannot take any NSAIDs.
Netta, Your English is excellent, so don’t worry about that. You have been through a lot. I hope things improve and you begin to feel better soon.
Hugs and prayers from, lynne
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Ugh Lynne that is exactly how my shins feel. I keep telling my husband that my shins feel fractured. I'm really sorry that OTC's weren't helpful. I haven't tried them yet. Last night my shins were quite painful and my legs were super stuff and achey. This SE didn't start for me until I'd been on AA for about 4-5 weeks.
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Netta Ger-yikes on the bone Mets to your spinal column. It seems like tumor markers help for some people and not others- having a blanket policy to do them or not seems dangerous. Mine are very predictive. Also different scans seem to work for different people- I get PET scans, but, a lot of people’s insurance won’t cover a PET.
I had shin pain on right side only for the last several months of Ibrance and into the first several months of AA. it is now gone. The PETs don’t go that far down I don’t think. I hope yoursresolves. My worst joint pain was at the beginning of arimidex after the chemo. I think that taxol is very hard on muscles and nerves and then adding an AI on top of the damage of the chemo took a few years to get better even with the yoga and Motrin.
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