Radiation recovery
Comments
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Yes I did go to happy hour Friday, and had a good time as usual. Thanks for asking.
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MostlySew, So sorry about the strange bumps. It is always frustrating not to know what the problem is. I hope you get some news soon and I hope the bumps will be easily treatable. Also, I am sorry you missed opening night of the symphony. It sounds like you had a great visit with your brother. I hope the happy memories will make your heart smile.
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Thanks Elizabeth. I should hear about blood tests tomorrow. To me it looks like my body is fighting off imaginary invasions...the silly thing, LOL. You must be just about ready to pack up for your trip to see Janis. Think she's already cooking for you?
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Sew, don't you wish our medical mysteries could be solved in half hour like on television? I hope this is gone fast and easy for you.
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MostlySew, I'm so sorry you are dealing with that rash! It sounds really uncomfortable. I hope they get it figured out fast!
Kate, your picture is so cute...I don't think I've seen that one!
I went to the Supportive Care/Survivorship Clinic at the end of last week. I felt kind of silly because the department is part of the palliative medicine department at UAB, but they put me at ease right away. They were the first doctors who really listened since all this started. The oncs are so busy (and rightly so) that they don't have time for aches and pains and side effects, although they try. This clinic has doctors, pain specialists, nutritionists, physical therapists massage therapists, pastoral care. And if there's anything else you need, like they want me to go for a rheumatology consult, they will set it up. I saw the doctors and the nutritionist, who put me on a fairly strict diet. They are sure that the weight gain I'm experiencing is from metabolic shock from the instapause/AI combination, but regardless, we have to get it going the other way.
They're willing to work with me on getting the meds right and helping me find quality of life. Praises! So, anyway, I encourage you to go if there's something like this in your area. It was such a relief to find someone who understood that I'm not just lazy, but that there are real side effects that happen from cancer treatment and will help figure out ways to help.
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Wow, Steph, I'm so glad you found your way to the Suvivorship Clinic. It sounds just perfect. I'm starting a 3 week class/1 night per week underwritten by the local Suvivorship group and the National Cancer Foundation that discusses nutrition, cancer, etc. etc. I'm looking forward to it and do hope it helps. Keep us informed of what you learn.....
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Ok, I've just heard from my PCP, and all I have to say is.....Yuck! Apparently I have a low white cell count (2.2) and this is messing with my immune system. My rash is a rampant something that was allowed to grow due to this imunosuppression. He thinks it is probably the Prolia infusion I'm taking that cause this. He's referring the case to my MO. Man....I don't need this! I was fortunate enough to not have chemo, so haven't had to deal with low white cell count. And, my MO is really hard to reach so no telling when I'll hear from them! My PCP said if I hadn't heard by 10 am to give them a call....if only he knew! Geeze.
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Sew- Squeeky wheel gets the grease. Call and call, you have a right to access your MO!
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Sew Sew Sew.....what am I to do about you? I am gone for awhile from here, and look at you! Guess I will have to keep up here more often. Yuck on the bumps and the low white blood count. I am sorry you have to go through all this now. Keep bugging that MO like SAB said. You have to get to the bottom of this. Are the bumps any better today? Really sorry my friend! I'll get to the kitchen and bake you something marvelous. I feel so bad for you.
Stepth, what a great opportunity you had to attend the Survivorship Clinic. You got some great ideas and tools. Being able to get the proper care is so important. Quality of life is so important as we continue this journey. It is so good to see you heading down this new path of discovery.
Elizabeth....9 days! You bet I am counting. I am so, so excited to finally meet you. You are so important to me. What a wonderful friend you have been. Not cooking just yet but plotting!
I hope everyone is doing great.
Love and hugs all around!!
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I am just as excited as you are, Janis. You are a wonderful friend to me, too. I am honored to know you. Like you, I am counting the days until we meet in person.
MostlySew, I am so sorry about your low white cell count and rash. I hope you will be able to reach your MO soon.
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Thanks everyone. I took Sab's advice and started calling the MO office at 10 am. Then another message to another person at 11:15. I finally started getting call backs that scheduling had to transfer me to the new patient person since this was a new problem, that person called to say she was referring me to the advice nurse. Advice nurse called and had to refer me to the dr's personnel (which is where I had started). That person called and said the dr. Could see me next Tuesday........Tuesday? I told him I guessed I'd live till then and he claimed that he'd asked the dr and he said he'd see me next week. The person i originally called never called me back at all! So....once this gets settled I think I'm looking for another MO. This guy is very good, but the office is just too hard to deal with.
Meanwhile, my bumps have turned in to massive red spots, but they're not as raised as before. My lower legs however look like I don't have any veins....just angry red masses. I'm sure glad they only burn and don't itch!
Janis, looking forward to whatever concoction you creat for me in absentia. I'll gain weight even from this distance I expect, but will love it just the same.
Have a good evening everyone.....0 -
MostlySew, I'm so sorry you're having trouble getting in to see your MO. Mine is hard to reach as well, so I understand, but seriously! You would think when you have a need, they could get you in. I hope your class goes well. I wish we had something like that around here. I would definitely go.
Elizabeth and Janis, I'm jealous! I wish we could all have a get together.
I'm doing okay staying on a diet, but as I'm writing things down I'm realizing I wasn't eating that much before. I think it's definitely the hormonal thing. I hope if I bump up exercise and lower the calories a little it will jump start my metabolism. The weight gain has been a little rough. I'm not extremely vain, but thirty pounds is a lot, especially since I wasn't thin to begin with.
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Steph, I think bumping up the exercise and lowering calories will just do the trick. I'm pulling for you. I'll let you know what I learn from the nutrition class. I'm planning on wearing a veil (:o))
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Sew, this really bothers me. Consider snapping a picture of your rash and sending it to the MO via email. Even if you don't send it, it would be useful to have for reference. Anyway, this MO works for you...and has forgotten that. I think that part of being a "good" doctor of any kind is to provide care and support to patients in a timely fashion. I'm sorry if I am stepping over the line but I just have a pet peeve about the way patients are treated at so many different places, especially when they are the most vulnerable.
Steph the first time I lost a lot of weight (hmmm what's wrong with that statement?) was with Jenny Craig. They kick-started me with a lot of water. I still have a glass of water every time I get hungry and it helps. and as you know the food journal is very useful. Good luck!
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Sab, I agree. I actually do have pictures of this because it's so amazing to me. It does turn out that the bumps aren't worse today, and the red messmof my lower legs actually is not as angry looking tonight at all. By next Tuesday they will probably be almost gone......perhaps this Dr has seen a Prolia reaction (which I think this is) and knows it takes about 10 - 12 days to heal. At any rate he is planning blood tests and it makes sense to wait 1 week between CBC counts. Anyway, had It been worse today I was going to call them again today, but fortunately haven't had to. So...onward and upward as they say. Thanks for the concern.....
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Hi, I've been under the weather and off the radar. Ten days of what started as a cold -
I was supposed to go to Florida yesterday with my DD and my 2 little princesses....but I had to cancel due to URI. That wasn't easy. I was supposed to room with my GD (4) and I couldn't risk getting them sick.
Sew, I can't believe your runaround. How ridiculous. You should have had a call back from MO personally to see how you are getting on and to reassure you that it is OK to wait. My MO is oh so busy with her research and flipping her long hair ... when I had angina type pains while just starting Femara she never even called me back. I had to deal with it through my cardiologist.
I hope you are comfortable and that the rash is subsiding, even though you want him to see it.
That is crummy about the blood count....always a worry. I hope the next test is normal.So glad to have you ladies here ... each of you has a special gift to offer whenever someone needs it. Sometimes we are givers and other times takers... the acceptance and support is amazing.
Hugs,
Joan0 -
Steph wouldn't a get together with all of us be fantastic? I would love nothing more. My DH is trying so hard to win the lottery. Hehehe, just a couple dollars a week but it is a dream. Then we will make it happen! I will be paying for the party, of course. I know it is silly, but nothing would make me happier than a get together with everyone here. We have kind of been holding cyber hands for a year now. You all mean so much to me. Meeting Elizabeth ONE WEEK from today is sure a joy for me. I can't wait. This is a dream come true. She is a very special soul.
SAB I wish I had your weight loss motivation. All my adult life I have struggled with my weight and I know how difficult it is to stick to a good weight loss program. I do love lots and lots of good healthy foods. It is the not so healthy foods that are my problem. Plus that Betty Crocker streak I have.
Sew...I am glad there is slight improvement and the legs aren't angry anymore, just somewhat cranky. I sure hope you get some answers when you do see the doctor. Keep us posted. I will be baking something really special for you..in spirit!
I saw my surgeon's PA yesterday and the hardware is all in place in my neck. I am going to start PT soon and see if that helps with some of the pain I am experiencing. the x-rays did clearly show the arthritis in my neck. She said while they fixed the worst problem with the fuse surgery, they can't fix the arthritis. I am beginning to have a lot of pain in my knees which is always a worry. Arthritis plus Arimidex? Anyone? My right knee would bother me from time to time prior to Arimidex, but now both knees are bothering me. Of course it might just be the arthritis progressing.
I am allowed to take my collar off now inside the house. I have to be careful and not do anything too strenuous. I did some cleaning yesterday, just light, but boy did that feel good. Seriously!
Joan, I know you have really been miserable with your cold. Healing hugs to you!
Have a wonderful weekend ladies. Be good to yourselves.
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Joan,
I'm so sorry about having to cancel your trip. That must be a real bummer for you, but you did show good sense in cancelling. I know...that doesn't make it any better does it? Get well soon....and special healing hugs to you.
Janis,
Hurrah for moving freely, albeit with care. Bet that feels just great. I do think Arimidex could agravate your arthritis, but I think your inforced inactivity has probably also greatly contributed to it. Bicycling is great for your knees and I think they're missing it. So is Pistol probably. Guess you'll just have to go to the bike track this winter to keep your knees in shape. I'll send knee pads and helmet so you can compete with all the kids.....LOL
Me...my spots are definitely better this morning. Hmmm...maybe that MO knew what he was dealing with? Or, perhaps our bodies just heal themselves inspite of everything! I'm actually not as tired either so I think my white cell count is coming up.......Yay!
Take care everyone.
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Sew and Janis, thanks for the good wishes.
Actually, last night was a no sleep night and coughing. When I awoke today and felt the same, I have no regrets about canceling the trip. I just wish they would text me a photo from Disney!
Sew, glad the rash is fading...it sounds like a reaction to something. I hope you get confirmation of that from the MO. Glad you are not as tired.Janis, sorry things are moving so slowly. I don't like when the docs and nurses say things are progressing normally when there is still pain. (Pain should not be the normal)
When I took Arimidex for a few months, I immediately developed body and joint aches that finally settled in my thumb joint and palm of hand area. I noticed a hard but tender growth under my skin. Even after going off Arimidex this persists today. When I brought it up at a checkup, I was told "it's arthritis" as though it was normal for me to have it. I didn't have it before. I feel your frustration. I agree with Sew...mobility, when you are able, may help. Have you had any PT? Wouldn't it be nice if they approved preventative PT for temporary immobilization instead of waiting.
Hugs for today
Joan0 -
Joan, I am so sorry that you have the miserable cold. I hope you will feel better soon.
Janis, One week from today, we will see each other in person. It is a dream come true.
Unfortunately, I have to join the ladies with joint pain. My right hand has trigger thumb thanks to arimidex. That is not so bad because I know it can be fixed with minor surgery. What is worse is the pain in my right knee. It was fine until I started arimidex. At first, there was just a twinge of knee pain when I first awakened in the morning. Now, the pain is constant. I will see my orthopedist soon.
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Joan I hope you feel better soon. Hugs!
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Joan, janis Sew and Kate, Glad to hear everyoe is healing albeit slowly. I am doing PT for my wrist and it is progressing. My thumb is acting up because it doesn't like the hand movements I need to do so I have to back off on some of them for now. Hope the visit goes great for Janis and Elizabeth. Have a good weekend everyone.
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pt take it slow! Same goes for Janis. I have arthritis too, since a young age, and wear knee braces when I walk (just the elastic ones from the drugstore) and they really do seem to help keep everything steady.
sew-I am truly happy that your spots are fading, but even if the MO knew that they probably would he should have shared his thoughts with you and gotten your input. Sorry, I can't be easy on him.
Joan what a bummer to miss time with GD! 4 is such a wonderful, funny, dear age. I think of it often when I look at my rotten (but much loved) teen agers
.Kate, an update? How is your healing coming? Are you going out tonight?
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Elizabeth, can you describe 'trigger thumb' to me? Is that what I have? And I didn't know there was surgery for it. I hope you can walk through your knee pain...I have had bouts of it when I couldn't do stairs or walk easily. First time I got a steroid injection and was pain free for 3 months. When it came back, a PT told me to walk and I did it slowly...no pain now.
pt, hope your thumb quiets down....I have good days and bad...but long drives can get painful (gripping a steering wheel). thanks for your good wishes.
SAB, you read my mind and heart....i wanted to go this year with my GD because of her innocence and 'magic' ... i know some day she may not choose to share her time with me.
Am feeling good tonight because DS called from Chicago and found a condo studio to rent in the (famous? round Marina Towers overlooking the river. It looks like a fun place to live.
He is happy about it and so am I.
Kate, I'm sure you must know about these wacky round buildings...they sure stand out. Hope you are doing well!
nite alljoan
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I start PT on Monday. I am really looking forward to it. I do have more range of motion in my neck than prior to surgery, so that is good. I think that the lack of mobility these past 6 weeks have contributed to the soreness and stiffness. I am really hoping the PT can teach me simple techniques that will relieve a lot of this pain.
ptdreamers so glad you popped in with an update. It seems the hands and thumbs really take a lot of abuse. I see several people with hand related issues. My left wrist gets bad from time to time but most of the time is not a problem. My knees though...that will be next to have checked. Since I already know I have arthritis thinking that the addition of Arimidex is not helping. It will be a long five years. Actually I have 4 years, 1 month to go.
Joan I am happy to learn your son has found a great place to live. It sounds like he is settling in well. I know how much you miss him though. Hugs Sweetie.
Sew, I better be getting an update from you soon. You know I have already warned you. No silent treatment. You know the conseqeunces. Seriously, hoping by the time you get to the doc you are bump and rash free, and armed with photographic evidence. Keep us posted.
SAB I am trying to take it easy. Doing my best but I tend to overdo it. I am really trying hard to pace myself.
Elizabeth, just 6 days now. I can't wait. This is such a joy for me. Can't wait!
Hugs and love ladies. Do something special for you this weekend.
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Hi Sab, I did go out last night to happy hour in Malibu, and had a great time. I am feeling much better. The only discomfort I have is an itch, but of course that means the scar is healing. I will need a revision surgery. I am not sure when I will get it. I am not in a hurry, because I want to rest from the last surgery. Thanks for asking.
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Hi Joan, Trigger thumb is a condition where you have trouble bending your thumb. It does not bend smoothly. It either will not bend at all or bend suddenly which is called triggering. The problem is not actually in your thumb joint. The real culprit is a tendon (pulley) at the base of your thumb. Sometimes, there is a sore lump at the base of the thumb. I had the same problem five years ago in my left hand long before I started taking arimidex. The orthopedist first tried a cortisone injection at the base of the thumb. That gave me relief for about three months, but then the triggering returned so the orthopedist did a surgical release of the tendon causing the triggering. My left thumb has been fine since then. I have already had a cortisone injection in my right thumb in June and it lasted three months. Now, I guess I need a surgical release in that hand, too.
I am glad your son found a nice apartment. Keep on feeling better. I hope you will get to take that magical trip with your granddaughter someday.
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Janis...oh my gosh, you're getting feisty in your recovered body! Talk about pain in the neck! (lol couldn't resist that one my friend).... Anyway, the report from here is my spots, bumps, lumps are much better. I'm going to live! My lower legs are actually improving too so I can possibly wear shorts by next summer....or this current heat wave whichever is warmer. I intend to question the MO about it all next Tuesday anyway. I'm sure glad you're starting PT next week, I think that will help tremendously.
Joan, your son's place in Chicago sounds perfect...right in the heart of things and beautiful too. Good for him in finding it.
Sorry to hear about all the trigger fingers and thumbs out there. Hope you all find relief soon.0 -
Elizabeth, thanks for explaining the thumbs to me. I do not think I have that condition. I just have a lumpy growth and tenderness, stiffness and weakness in both thumbs. No triggering. I could see how it happens though.
Sew, I am sure you will be able to wear shorts before next summer
Glad to hear the rash is continuing to fade. Is a heat wave a good thing this time of year? My heat went on for the first time last night...we're in a cooling mode in the northeast.
Thanks for the encouragement and good wishes about my son's move - am getting used to it but it isn't easy. And the little princesses sent me pix from Disney and they are doing fine. I am still happy I stayed home....am sleeping in and catching up on rest.
I'll be grading papers half the day tomorrow, and taking my DGS out to lunch (he's 22 - he has lived in our house since 6 wks. old and I raised him)....he's going to the Bahamas for a scuba diving trip - his graduation gift from a number of family members combined. He is excited. He's my last kid left in NY!
Hugs and wishes for a good week end....
Joan0 -
Joan I sure hope the worst of that bug is behind you. I am glad to hear your granddaughters are sharing pics with you. I bet they had a very memorable trip.
I started PT today on my neck. I did some work on weights to strengthen my shoulders and neck. Afterward they did ultrasound treatment on my neck followed by massage. That felt so good. The therapist warned me that it is common to experience dizziness after that neck massage. Something about opening up channels? I am so glad Chuck drove me, I was very dizzy when I left and also got really nauseated. I barely made it into the house and the bathroom and got very sick. Vomiting many times. I have the best DH......he followed me into the bathroom and he held my hair up as I vomited! It was awful, but after I laid down for about 20 minutes it passed. Whew! I go back Wednesday and will let them know what happened. I hope it was a fluke. That was just strange.
Elizabeth has made her way west and will be here on Friday. They are enjoying a Yellowstone vacation for a few days. I can't believe she will be here in just four days. Let the countdown begin!
I hope everyone is doing great. I think of you ladies always, even if I don't post too often.
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