I feel kind of numb

itdoesntfeelreal · August 2018

Go Ibrance!

CA 15-3 (BREAST)
Standard Range <30 U/mL
5/24/18 457
8/21/18 210

CA 27.29
Standard Range <=38.6 units/mL
5/24/18 435.8
8/21/18 266.6

candy-678 · August 2018

Yeah to itdoesntfeelreal for the lab work. How is the leg swelling?

itdoesntfeelreal · August 2018

Hi Candy-678. They are somewhat better but still very tight feeling still puffy around the knees. If I sit at the computer too long without elevating my legs they puff up again, particularly my feet. I haven't gotten the compression socks on yet though. I have 5 more days worth of diuretics after today so we'll see how it goes. How are you tolerating your meds etc? Do you have lots of fatigue? I hope you don't mind me asking. I have an older sister and cousin, both 74, who had breast cancer about 10 years ago, stage 1 I believe. I don't know all the details of their journeys but they are cancer free right now. Both were treated with chemo and radiation. My cousin told me that her energy level went up and down. Do you experience that up and down energy feeling? I kind of do. Just wondered.

candy-678 · August 2018

Hi itdoesntfeelreal. Your swelling worries me. What does your doc say? Is your heart not pumping well or maybe the veins in your legs don't do well pumping the blood back to the heart. Will you get a refill of diuretics when they are gone? Did you have this problem before the cancer diagnosis?

I do have fatigue. When I sit down to read or watch TV I doze off. And I just don't have the "ummph" to do things like I used to. I wear out easier than I used to.

I have a lot of heartburn and acid reflux. Hot flashes several times a day-sometimes several times an hour- with horrible sweating. Aches and pains everywhere---neck, back, knees, ankles, feet, etc. Some shortness of breath with exertion--walking at a fast pace or climbing stairs.

From what I have read, usually from the posts here, most of the symptoms I have are side effects of the meds for the cancer. Ibrance- fatigue, heartburn, and shortness of breath. Letrozole- hot flashes and body aches. Of course the cancer roaming around in us probably doesn't make us feel too well either.

Also, there are emotional symptoms. Sadness at times, depression at times, anger at times. I don't have much of a support system. My family doesn't like for me to talk about my situation much. I know it is hard on them to face it. This group is wonderful. The ones here truly understand as they are also going thru it.

I hope you have checked out the other threads---Ibrance, Steam Room for Anger, Bone mets, Liver mets, etc. I post on several---the ones that fit me and my diagnosis. Several of us do that.

Good visiting with you.

itdoesntfeelreal · September 2018

Hi candy-678.

Y'know the doctors aren't definite on the reason for the swelling so far. They have ruled out blood clots, I've had 2 ultrasounds on my legs and the last one about a week ago has left them kinda sore even. The gal doing the test had to press down on the swelling to get to the veins underneath so that was kind of a drag. Before cancer I have always had varicose veins, big knobby ones, very attractive, LOL! And my legs did swell in the past also, Every month until I went through menopause. My last full time job was at a warehouse in the heat of the summer. Originally I was hired as a data entry clerk which I did for 18 years. But the job was eliminated. So I did the best I could hobbling up and down 3 flights of stairs picking orders. I was drenched in sweat and my feet and legs got puffy. I even developed an open wound on my right leg, very small at first, but finally it got to be about the size of a nickle maybe and all around it was purple and red. I was fired from the warehouse after about 8 months of picking because I couldn't move fast enough. But while I still had insurance I went to a clinic and they said the wound was caused by my veins, poor circulation. They told me how to heal the opening with Neosporin and a bandage, and it closed up. My right shin is still all purple and red looking, but no open wound. I was supposed to wrap my legs which I did for a while but the wraps would come undone so I stopped bothering with it. My legs weren't really swollen much again until cancer. My pcp thought it was from the same fluid that was causing the pleural effusion. She thought the thoracentesis would eliminate it but it didn't. The onc said it wouldn't, not the same thing at all, and it probably isn't lymphedema which the pcp thought it might be also. The onc mentioned that my heart is good, and my blood pressure isn't too bad. I'm not diabetic, though I haven't been tested in 3 years maybe. They both thought it might be my thyroid so the pcp did increase the dosage, but that doesn't seem to help. The pcp said that diuretics wouldn't help, but the onc prescribed 2 weeks worth. Holey Moley. Truth is, I don't have a lot of confidence in the pcp and have decided to try a different one. I have an appointment this coming Wednesday so maybe starting with someone new will crack this mystery. My son helped me lug 4 baskets of laundry to the laundromat after he finished working today. It was kind of hot and more humid than it's been the last several days, so just going from the car to the apartment building entry when we returned home, and then up about 10 step, totally wore me out. I was all puffed out again and going through shortness of breath. I ate dinner, sat down to watch the news and woke up about 2 hours later.

You do have fatigue. Do you work, candy? I don't any more. I read some of the other threads and I feel so bad for people who have to keep a full time job if they feel like you and I both do apparently. How do they do it? The strength some people have is phenomenal. My son does a funny imitation of me after dinner, sitting in a chair we have, feet up on an ottoman, head leaning back, eyes shut, MOUTH OPEN, sound asleep. Oh well! I completely understand the lack of umph! I pulled out an old treadmill we have, and I know it would be better for me to use that rather than just sitting around. But just walking from the washers to the dryers today totally wore me out. I have some heartburn too, not too much. The doctor prescribed Ranitidine Hcl 150 mg twice daily as needed for nausea. I've only taken 2 of them since June so I don't really know how well they work and would hate to tell you to ask your onc to get you some. But I drink tons of diet ginger ale. It goes down easy, nice bubbles, and kills that yucky taste in my mouth. Hot flashes.....uh ...YEAH! Aren't they fun! Of course I went through that phase years ago with menopause. But I thought I was done with it! It's a little embarrassing when I'm talking to a cashier in a store or something and suddenly my forehead has a film of sweat on it. What can you do. I get butterflies in my stomach, kind of like being on a roller coaster, not something I enjoy by the way. I don't feel like barfing just feel weird. Usually I'm just too warm when that happens. I've run the ac most of the summer in spite of the cost. Can't handle the heat or humidity. I'm so sorry you have so much pain. I have some, but not much so far. Do you take meds for pain? I do think that moving more helps me with some of the aches, but sometimes my legs are too leaden feeling to allow me to move. This cancer is definitely catch 22.

I have noticed mood changes lately too. This forum is amazing for questions and answers, yes, but mainly for sharing. Sharing whatever. How wonderful. Reading the threads is heartbreaking at times, and at other times very uplifting, or even funny. It's there for everyone. That is so sweet. I haven't hopped in to many of them since I'm kind of new at this. Do you just pick any one of them that sort of speaks to you and reply? Is that ok? I don't use social media much, just FB and I rarely go there, just to see pictures of my cousins etc.

And I say too much! Sorry! Thank you for your kind words, candy. If I can help you in some way please let me know. Take care!

MuddlingThrough · September 2018

Itdoesntfeelreal, did you ask your oncologist about having a high protein diet to help reduce the leg swelling? One oncologist at my clinic has an accent. I don't usually see him but I happened to see him when my legs were worst. I'll never forget his words, "It's you leeeeevah. You must have protein, much moah protein." I'm not making fun of his accent but it made an impression on me and I'm so grateful for his advice.

itdoesntfeelreal · September 2018

Hi Muddling Through. I did ask my onc about the protein and they responded by saying that my albumin/protein is normal, definitely not low. I will keep watch on that number going forward though. Thank you again for the suggestion! Take care of yourself!

candy-678 · September 2018

Itdoesntfeelreal-

I am glad you are going to another PCP. It sounds like a circulation issue with the veins in your legs. Maybe the new doc can give you some more options to help the swelling. Wrapping the legs or using compression stockings might help to "push" the blood through and lower swelling. Keep us up to date.

Some days the fatigue is worse than others. Yes I work a full time job---desk job. I have been posting about work issues in the Steam Room for Anger thread. I will continue to work as long as I can and then ????.

My doc told me to use Pepcid twice a day every day, but I only use it when the heartburn comes. I just hate taking more medicine if I don't need it all the time.

I totally understand your statement about being at the store with the cashier and the sweat on your forehead. At least this time of year you can blend in some. During the winter it is really embarrassing.

No I don't use pain meds. Yet again, I hate taking a bunch of meds. I know I must have the ones for the cancer, but try not to use any others. I am sure some day I will probably need pain meds, but not yet.

I just go to "Active Topics" and when something interests me I start reading on that thread. When I feel comfortable or when I have a question then I post. I also follow the bone mets and liver mets threads since I have both.

Keep posting !!!

Icietla · September 2018

itdoesn'tfeelreal --

(((Hugs)))

itdoesntfeelreal · September 2018

Thank you so much Icietla! Right back at you! (((Hugs))) Take care of yourself!

itdoesntfeelreal · September 2018

Hi candy 678-

I have lots of fatigue. But I think some of it is because I'm not working any more. I used to have a pat time job, 5 days per week, 3 - 4 hours per shift. I cleaned a laundromat, it was a bit of money, the people were very nice, got to see all the neighborhood babies (I loved that!) and the activity was good for me. I was replaced when I got sick, of course. So I am at home most of the time now. If your job does become intolerable you can certainly apply for disability. I was accepted because I'm stage iv and will start getting some kind of a benefit in Dec and then in March it will be added right into my Soc Sec retirement benefit. Anyway, as my legs get better I would like to get out more. They are smaller so I'll see what the doctor says about it tomorrow. The main thing is that BC.ORG has given me back hope! I've never been in great shape but I'm not dead yet. Thanks to you and all the other amazing people who post here.

I don't blame you when it comes to one more pill. I take 9 tablets/gummies/pills every morning. I'm sure there are people who take more than that. Makes me laugh. Most of them are very small. But that's a lot for me! And when it comes to pain meds, like you i would rather hold off as long as possible. I might ask my brother in the health food store for suggestions since I'd rather avoid opioids completely if possible. But I'm not very brave. Fingers crossed.

One thing I have noticed is that I haven't been given any chemo or radiation yet. Maybe because the majority of cancer mets are in my bones....? But not only. Also lung, liver and adrenal. When were you started on chemo?

Thanks for the info about posting. Today I gave it a try. Now if the R on my keyboard will continue to work it will make so much more sense! LOL!

Anyway, thanks for the support! Take care of yourself!

candy-678 · September 2018

Hi itdoesntfeelreal-

I have been working the last 3 days and just getting caught up on BC.org. How did your doc appt go? I started chemo when we first found the cancer and we thought it was Stage 2 and had not metastatized yet. When we found the mets in the liver and bone, my doc stopped the chemo and switched to the meds I am on now. I first thought that I was terminal and they didn't want to waste the expensive chemo meds on me since I was dying. But actually I think with our situation they want to use meds that may work but without the harsh side effects of chemo. And save the chemo if the other meds don't work. Maybe others will chime in their thoughts....

Hoping you are doing well.

Signing off for now.....going to take a nap.

Sadiesservant · September 2018

Hi Candy,

You're spot on. With stage IV, the treatment goes from having a curative intent (with adjuvant treatment) to a strategy of keeping the cancer under control for as long as possible while maintaining the best quality of life. When we are diagnosed at an early stage physicians will typically recommend hitting it hard depending on your risk of recurrence. In my case I was given CEF which is a pretty powerful chemo given my age and other risk factors.

Unfortunately, as we know, with stage IV there is no "cure". With this in mind the oncologists will shift to treatments with the least potential side effects, typically hormone based treatments if we are ER+. There are quite a number of them which we can cycle through. Once the cancer becomes resistant to hormone treatments they switch to chemotherapy protocols, often starting with those treatments that don't require time in a chemo chair (for instance, Xeloda which is taken as a pill) and again, with fewer side effects like hair loss.

Of course, that all depends on how your cancer is behaving. Your oncologist may recommend chemo earlier on if they are hoping to reduce the burden of disease and associated symptoms and also may switch back and forth between hormone treatments and chemo as mine did. My MO had me start with Taxol as he hoped that it would beat back the pleural mets - I had a LOT of fluid in my right lung. Unfortunately Taxol didn't do much so after three cycles we switched to an AI. When I had significant progression on the AI he switched me to Xeloda and now I am back on a hormone treatment - Faslodex.

All this to say that they do try to use as light a touch as possible to ensure our QOL is as high as possible.

Pat

Amica · September 2018

thank you sadieservant. That helps explain things. I wondered why my onc isn't being more aggressive in the treatment, and still have questions, but this helps me see where she may be coming from.

Sadiesservant · September 2018

I know it's hard for all of us to wrap our heads around. We think in terms of wanting it gone, NOW! One final point, don't underestimate the power of those hormone treatments. They are pretty awesome tools at fighting the disease. I just wish our sneaky cancer weren't able to figure out a way around them.

I feel kind of numb

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