Update: I haven’t been on here for a... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

3,696 members4,344 posts

Update

Red71
Red71

I haven’t been on here for a month or two...it seems like forever. My Ibrance stopped working so I went on the mental roller coaster that happens when you change medications. At that point I was off all medication for about 2 weeks and then started on Capecitabine but I got shaky and started loosing my vocabulary, as well as being nauseated and vomiting after every meal no matter what I took. A trip in to the oncologist about a week and a half after starting Capecitabine and my calcium was 12.4 so I was sent to the ER to flush out the calcium. I only thought I’d be there for 8 hours or so. 2.5 days later I went home. During that time the dementia symptoms got worse and my husband had to do all my talking because I just couldn’t explain myself. My doctor was surprised that I was able to realize that I had those kind of symptoms. He said many people don’t. I felt really stupid and kept trying to tell people that I was smarter than I was looking! I had another week off all medication at home and then restarted on Capecitabine at 300 mg morning and evening instead of 400 mg. No further nausea and I’m feeling much better. I need to complain sooner, I think! My hospital experience was also poor but I’ll add that in on a note below because my iPad is acting very wonky and I don’t want to lose what I’ve written. Elaine

48 Replies
oldestnewest

Update to my update...I really lost my ability to speak more than about a second grade level if that. I couldn’t really read much either, lines skipped around. I chose to go to one of the bigger and better hospitals in the area..Portland, OR has at least 4 first class hospitals. The whole time I was there no one offered me a toothbrush or any other hygiene utensils. My doctor asked why I didn’t ask for them but as I told him, I couldn’t. It wasn’t until I got home and brushed my teeth that I realized that I hadn’t done it that whole time. My husband was so rattled he didn’t think of it. I asked my daughter-in-law what they did in her ICU and she said patients who were conscious got their ADL done every morning. Unconscious patients get it done at more varied times. She was amazed. I guess that one is off my list! It was a very weird experience that I don’t want to go through again. My daughter-in-law probably would have done it for me butCovid rules said that I could have one visitor, the same one, for 24 hours, and then I could choose another. My husband didn’t want to give up the time, especially since we kept thinking I would go home. Be careful about your calcium levels, ladies! I hope everybody is doing well. I’m going to go back and try to catch up on the last month or so.

Elaine

Francesca10
Francesca10 in reply to Red71

Hi Elaine what a scarey experience.you sound more back to normal now and I’m glad for that. Hope you remain stable and the radiation helps.hugs♥️♥️

LynnFish
LynnFish in reply to Red71

Elaine! My gosh, I'm so sorry, what a nightmare!

I'm glad you got it sorted out (but, man!, nearly three days in the hospital!). I can't imagine what you and your husband went through!

And this is a great warning/cautionary tale for all of us.

I'll mention that I pretty recently became very attuned to the whole calcium-level issue...I've mentioned elsewhere on the board that a few months back I was feeling "off" for several weeks. A very unusual (new, actually) feeling for me, difficult to describe, but included constant queasiness and general malaise. I somehow trial-and-errored my way into linking it to calcium, so I checked and found that my calcium was the highest it had ever been...i.e. just south of elevated, but enough to make me aware. As my calcium decreased, the feeling went away, but it has returned recently as my calcium has increased...

Not to scare anyone, but I met a young fellow on a plane a couple of years back (some folks may know I sometimes have great convo with seatmates (but I never initiate!! I'm not one of those people!! :) )..anyway, this young fellow had a grandmother who had died very unexpectedly from hypercalcemia (sp?) due to breast cancer/bone mets, when they didn't even know she had cancer!! It's like all of her bone mets were releasing calcium and by the time she/they noticed she was nearly in a coma!

So I do think we'd be wise to check our calcium, but our docs do, so I guess that has it covered, but you never know what happens between labs, so it's probably good to know that this really is a "thing" to watch out for...

Elaine, again, I'm so glad that you've gotten through the crisis and are feeling better, and thank you so much for sharing this experience...

Best,

Lynn

Red71
Red71 in reply to LynnFish

My calcium level is checked every month when I go in. It was normal three weeks before this happened, so it can change rapidly. Mine went from 9.2 to 12.3 in that amount of time, so it’s good to watch for symptoms as well as looking at numbers. I’m now being checked every 3 weeks because that is the timing of my Capecitabine cycle.

BluHydrangea
BluHydrangea in reply to Red71

Elaine- what a experience you have and continue to have. I am so very sorry you have had some trouble with finding words— it is good that you were able to get to a good medical center and are now stable. Wishing you continued stability and great success with the new meds. Big hug (())!

mariootsi
mariootsi in reply to Red71

Omg! What a horrible experience! Glad you are recovering.

Partia
Partia in reply to Red71

So sorry. Hugs

Tam-56
Tam-56 in reply to Red71

Elaine, I’m shocked and saddened that you had to go through such a horrible experience! Why weren’t you warned about the possibility of high calcium levels? I’ve never heard of this. I would have thought it was a flu bug and not call the Doc. I live alone but sure will call doc if I get symptom like you had. Thank you for sharing your experience.

I’m so glad that you are stable now and are tolerating your new meds. Hugs to you and I wish you success on your new protocol.

Maura❤️

Red71
Red71 in reply to Tam-56

My husband is the one who said I had to call and get seen. In the beginning I wasn’t aware of some of the changes because they were happening so gradually. By the time I went in I didn’t feel safe to drive so I’m glad my husband was around!

Hi Elaine. This is such a scary experience. You seem to be so much better now which is really good news. Just wondering, what blood tests did you have before you started Xeloda? Was your calcium level checked before you started? It seems that a week and a half after starting Xeloda is a bit quick for your calcium levels to rise unless they were already high to start off with? Maria

May I know what dosage of Xeloda are you on now and are you comfortable with your new dose? Are you taking it as mono therapy or in combination with another drug? Maria

Red71
Red71 in reply to MyMiracle13

I’m on 300 mg in the morning and 300 mg in the evening. The normal 400 mg dose was making me vomit constantly. I am doing fine on the 300 mg dose.

MyMiracle13
MyMiracle13 in reply to Red71

I’m glad this dose is working out for you. Hope it keeps the cancer at bay🙏

Red71
Red71 in reply to MyMiracle13

I had to go back and figure this out, which was a good thing to do. I was too crazy/demented to do it when it happened.

Aug 18: Ca 10.0

Aug 27: start Capecitabine (Zeloda)

Sept 4: Ca 12.7

Sept 4-6: Hospital Ca 9.4 on discharge

Sept 15: Ca 9.4

Sept 22: Ca 9.2

It seems like I should have another result before my hospitalization. I’m going to go back and check but save this first.

MyMiracle13
MyMiracle13 in reply to Red71

Thanks for posting this but what’s the normal range? I’m having blood works done on Tuesday and I’m making sure to include calcium levels. Thanks for sharing your experience. It’s an eye opener for all of us. Maria

Red71
Red71 in reply to MyMiracle13

In my lab the normal is 8.4-10.2.

LynnFish
LynnFish in reply to Red71

Elaine - Thank you so much for sharing this data!

As mentioned earlier, I am all over my calcium numbers now...it was 10 last month ("elevated" begins at 10.1)and, after tracking my labs so closely over time, I am pretty sure I can feel when it's a bit high, e.g. I feel it right now (a unique type of constant queasiness (meds never made me queasy) and feeling "off").

I'm just shocked to see how quickly yours shot up! So, like, that's not even a normal 4-week cycle of labs! Would you mind sharing what you felt leading up to the crisis, i.e. before it became glaringly obvious? Just so that we know what to look for?

Do you know/have any idea what caused this? Was it the two week break, i.e. tumors possibly worsening (although that seems awfully fast, i.e. only a 2 week break!), or was it the new meds somehow affecting your calcium?

Again, thank you for sharing this valuable information...And, phew!, I'm so glad you're feeling better and the calcium's under control!

Lynn

Red71
Red71 in reply to LynnFish

They think that the two week break on no medication allowed the cancer to crunch away at my bones enough to let the calcium loose in my blood stream. As. Compared with some of the women here who have been on Ibrance a long time, my Ibrance only lasted two years. I think my cancer is unfortunately very hungry and very smart!

Red71
Red71 in reply to LynnFish

I forgot to tell you the symptoms I was feeling. My hands were shaky and I had a terrible time writing anything...it was like I was too uncoordinated to hit the right keys in my phone or iPad. I also lost a lot of vocabulary. My eyes started to jump around when I read anything so I was reading part of line one then line three and then part of line 2. Like my eyes were as uncoordinated as my hands. When it got really bad I couldn’t tell anyone the timing of what was happening and finally had to ask my husband to talk for me. On my second day in the hospital one of the nurses asked me what kind of nursing I’d done and I was still unable to enumerate the jobs I’d had in any kind of order. By the third day when I was released got back to being coherent. My daughter-in-law said it took another week before my speech was fluid again, without big gaps where I was searching for words.

LynnFish
LynnFish in reply to Red71

Elaine! Thanks so much for sharing this info, hopefully many of us will see it so that we can be vigilant about looking for these issues! And my gosh! How frightening this must have been! I'm so glad it's been resolved, hoping things remain in check!

Best,

Lynn

As you know, I'm on that Ibrance-failure roller coaster too. I'm so sorry you've had such a horrible experience with your new med and the hospital. Hopefully new dosage will be well tolerated and successful.

Hugs and best wishes to you!

Manon

Elaine,

What a frightening experience! So glad to hear you are feeling better.

xo Jade

Hi Elaine! I’m so glad you are home but sorry about your Hospital experience. My guess would be you were at the hospital on the hill but I suppose that kind of treatment is possible anywhere. I honestly think the smoke and stress from the fires has contributed to lots of us having issues this week. I am about to be admitted to Providence Glisan; fluid retention, possible liver blockage. So far the care has been amazing and I’d rather be here than home worrying about it. Hope you keep feeling better and see those grandkids soon! ❤️Patty

Red71
Red71 in reply to MacroMom

I was at St V. My oncologist told me to go to Meridian Park next time. He does call there. He was out of town when all this happened. My daughter-in-law told me I should have gone to Immanuel because she works there and would have gotten me VIP treatment but my oncologists don’t see patients there.

Are you still at Providence? How are things going? I hope better! ❤️Elaine

My goodness... you’ve had a time. The dementia issue is so scary. I’m so glad you were able to realize your situation. I’m so scared of hospitals, especially now with this corona virus. So glad you are returning to your “normal.” Wishing you all my best with your treatment.

Hugs,

Stacy

Partia
Partia in reply to Staysha

Me too. I never heard of the dementia aspect before.

Dementia type symptoms sounds one scary experience ...and I am glad you are home and able to look back at what happened . This will remind us all to keep a check on our calcium levels too ! Hope the treatment goes well ...Sending love ! x

I'm pleased you're feeling better. Losing your power to communicate is pretty serious in my opinion.

Yes, dont hesitate in future :)

Best wishes xx

Oh my goodness Elaine. What a terrible experience you have had. Must be like locked in syndrome. How very scary. So glad you have come out the other side and are feeling much more like yourself.

Welcome back

Clare x

Dear Elaine

While reading about your terrible, surreal experience, I began thinking of all of those who do not have someone who can speak for them, who do not such a good support system or, for that matter, any support system. I am concerned about those who are in that unprotected situation.

I am fairly new to this forum, so do not want to try to reinvent the wheel. Perhaps the following is in play, now. I suggest that every member of this club have contact information of the closest three members if they want to and that the administrators facilitate this on a confidential level. There are other ways of doing this but I like the idea of belts and braces. Any support system possible should be made available to all that want it.

What say you?

Frances

hdhonda
hdhonda in reply to jersey-jazz

I think it is a good idea. I don't know how to accomplish it. Blessings, Hannah

jersey-jazz
jersey-jazz in reply to hdhonda

Thank you for responding, Honda.. Today, I looked further on this website and found a three year old item about this sort of thing. Perhaps an administrator will chime in with a suggestion or plan. If we can make something like this happen, I would feel so much better about those of us that are really alone. THEY NEED THE SUPPORT!

Some other day when I have my vitality, I intend to investigate further. Today, I am having a very weary time of it and intend to spend the rest of it with bed and book….and perhaps some butter pecan ice cream.

Red71
Red71 in reply to jersey-jazz

Frances, I had the same feelings. I told the last nurse I had that I felt sorry for those who had no support system, because even with having one, it was hard to be in the hospital. I am sure there must be some kind of thing available but I don’t know of it either.

Elaine

Adding to my comments above, I too had a hospital experience because I fell off my bike and got banged up and concussed. I went to the emergency ward by myselfand got snapped up and put in the acute ward for two nights and three days. They wanted to give me medication from their supply. I called daughter. She went to my home, got my pills, brought them to the hospital and insisted that those were administered to me. She stayed there until it was accomplished.

I had the help on tap for when I needed It because two out of three offspring live within striking distance of me and are on call if and when needed.

It would be good if everyone on this post had people to support them at a moment's notice.

So sorry you had to go through this. Hopefully things will go smoothly now.

Elaine, I'm so sorry you've been through such a scary experience, but I'm thankful you were able to recognize the problem and that your husband was able to be there with you. COVID-19 has definitely complicated hospital protocols and services. Hope things will settle down and that your new dosage with be both tolerable and helpful. Prayers, healing thoughts, and digital hugs. Sharron

Dear Red,

I can't believe how much you have been through. Praises that you are so much better. Best wishes to you. Blessings, Hannah

Gosh Elaine I'm so sorry to hear of your experience but hypercalcemia is scary and very dangerous. My calcium builds up quickly in my blood stream too and for that reason my oncologist has always told me not to ever take a calcium supplement.

I'm happy you are on the mend and moving forward. Take care.

Sandra

hdhonda
hdhonda in reply to girlsptz

Sandra,

Great to see you on the board. How is the bike rides going. It is going to be too cold soon. Hugs and blessings, Hannah

girlsptz
girlsptz in reply to hdhonda

Thank you Hannah. The dizziness has made my bike rides more challenging and of course my oncologist advised against it but also knew before the words were out of her mouth I was going to ride regardless. I know when I feel like I am in danger of passing out and stop my bike until the feeling passes. Crazy I know but I love my rides. The weather is beautiful here and I hope to be able to ride until November like I did last year.....then I switch to indoor biking with virtual destinations. Of course all that may change after I have my brain MRI on Tuesday evening. Fingers crossed for no mets.

Sandra

hdhonda
hdhonda in reply to girlsptz

Prayers for you Sandra. Hugs, Hannah

LynnFish
LynnFish in reply to girlsptz

Sandra, So good to see you on the board! (heart) And I'm glad you're defying doctor's orders a bit to keep riding! :) Best of luck with the MRI, I'll be sending good wishes up north!

Tam-56
Tam-56 in reply to girlsptz

Best of luck with your MRI! You will be in my thoughts. Maura❤️

I was also on low dose Capecitabine 300mg each morning, one week on and one week off as I do not tolerate chemo very well. Good luck with everything.

So sorry about your trip to the ER I know how you feel never know who to call are they keeping you or not.

What I have learned to do is keep a bag packed for hospital in my closet. Any time I need to go to hospital or call an ambulance I make my husband grab the bag. I put sleeping cap as I wear a wig. Toiletries, pjs, underwear brush, phone charger,kindle reader anything I think I will need for a few days. Really came in handy during Covid as I could have no visitors at all. I was in for two weeks last time and could not talk or eat due to mouth sores.

You must have been so uncomfortable. Hope you are better now. Not being able to eat is so bad.

I lost 25lbs and even though I could use it I felt stronger with a few xtra pounds. I have not gained any back as food tastes bad and I cannot get much down.

Will be thinking of you

Barbara

Jerseygirl45,

What a great idea! Thank you for sharing...

Lynn

Red71
Red71 in reply to Jerseygirl45

I need to pack that bag also. I thought about it when I came home but it swiftly dropped out of my memory bank. Thanks for the reminder...I’ll put it on the list that never gets finished (but if it’s not on the list I guarantee it will never get done)!

Hi Elaine,

Your recent hospital stay must have been a frightening experience. I'm so sorry to hear of everything you went through. You must be so relieved to be back home. Thanks for the reminder about checking our calcium levels. I just logged on to my patient portal to check my pathology results from last Friday and my adjusted calcium level is 2.36mmol/L, which is within the normal range. It's so important for us to stay on top of things, so thanks again for the reminder. I hope you are feeling better.

Take care,

Sophie

You may also like...