Little Update - but not feeling good

[michellecairn]

FYI - this is a bit long - I always add in too many details - but I tired to make this short, but it didn’t work. Sorry.

I know I haven’t posted any updates in awhile, and I’m sorry for that, but I do come here every day and read what everyone else has posted. I’m due for a scan on Feb. 16th, with the results on the 23rd.

My Mayo visit in October was uneventful. My CT showed I was stable, and they feel the immunotherapy is working. They also said there are plenty of 2nd and 3rd line chemos I can try if this stops working. The only good thing I found out is they actually were able to pinpoint the elusive colon tumor. It says it is a 4cm long partially circumferential lesion in the mid transverse colon.

Anyways, my main reason for posting today is that I have been feeling horrible lately. I’m going into my 3rd week of this, and I have no clue what it is or what to do. My doctor and nurses really have no answers for me.

It started Sunday morning Jan. 22nd. I had to work at 4am, and When I went in I was fine/normal. I had two bowel movements by 5am and that usually makes me feel even better since I’m always constipated. By 6am, I was so weak, and I just felt blah. I really cant explain it any other way. I basically left work at 7:30am after sitting for a half hour to see if I felt any better. I was home and in bed by 7:45am. I didn’t leave the bed other than to use the bathroom until Monday evening. I didn’t really eat anything those 2 days and I did feel extremely nauseous and just plain worn out.

Tuesday morning, I had my standing fluid appointment. I had a floater nurse, and I told her everything that had been going on for the last 2 days, and she wrote everything down, but had no suggestions. I got my bag of saline, dexamethasone, and zofran. Usually I feel a lot better after fluids, but this time I didn’t. I still felt blah, but I was able to eat because the dex made me hungry. I stayed home Wednesday too, and was in bed all day.

I managed to go back to work Thursday, but only made it 6 hours before having to leave. Friday, and Saturday, I still felt off, but managed my full shifts.

I slept all of Sunday, Jan. 29th finally waking up around 7pm. Monday morning I went to work, and after a half hour I felt yucky again. Enough that I felt I couldn’t drive, so I called my husband to come get me. I dove back into bed when we got home. Same thing, I felt blah, and I didn’t feel like eating anything. I managed to eat part of a cup of soup. Tuesday, I went back for fluids and had a regular nurse. She had me see the physician’s assistant for a cyst under my arm (another story) and I mentioned how I had been feeling, and her best guess was I picked up a virus of some sort. Again the fluids didn’t make me feel better other than wanting to eat.

Now I should mention I’ve been having an issue keeping my weight on. Usually I’m losing about 3-6 pounds every 3 weeks. This time I lost 12 pounds which isn’t good.

I managed to work on Wednesday, and a half shift Thursday because I had my immunotherapy treatment. My Dr. didn’t seem too concerned about the way I have been feeling. She was focusing more on my weight which she should, but part of the weight loss this time was that I basically wasn’t eating at all. I worked Friday and felt off, but Saturday was another really bad day. I basically did the bare minimum and sat in a chair for 3 hours since I knew there was no one to cover my duties that day. Spent all Sunday, Feb 5th back in bed. Yesterday, after an hour and a half at work I had to leave again. I was feeling a bit winded and planned on having my husband take me to the hospital, but I fell asleep before he fully woke up, so he just left me to sleep.

I have noticed that I’ve been more winded at work which is pretty unusual. When I first went back to work I was quite winded and became tired easily, but since I’ve been back I have basically gained all my abilities back other than the lifting 70 pounds.

I had fluids again this morning, and I’m just hungry, no other motivation. I saw another physician's assistant today and she had no clue either other than to get out of bed and move around because laying in bed all day is doing me no favors. The only thing is the more I move around, the worse I feel. I did ask if it could be pneumonia since I do have all that fluid on the outside of my lung, but no one said anything about that. I am now off of work until next Monday at my own request.

This evening, I made a pan of finger jello, boiled a pot of pasta, and mixed up some apple dip and was a bit winded.

I’m tired of feeling this way, and I feel like I’m at my wits end! If anyone has any suggestions I’d be very appreciative.

Best wishes to everyone!

[jhocno197]

Have they checked your white counts? Checked for UTI?

[michellecairn]

Have they checked your white counts? Checked for UTI?

jhocno197,

My white counts were 7.7 on Feb. 2nd, and 5.4 on Jan.12.
Those are both within normal range. Now that you said that I went back through and looked and the lowest I've been since getting checked all the time is 4.1 on folfox. I seem to usually hover in the 7.0 range.

I haven't had any problems urinating, in the past when I've had a UTI I've had the urgency and burning. I had a bladder/kidney infection in August where I had urgent but nothing would come out, and my lower right back was quite painful.

I did notice that first week that my urine was quite clear even after not drinking much at all.

I'll ask them to check for a UTI.

My husband seems to think I caught the flu without the vomiting and diarrhea. I just don't know what to think of it anymore.

[Jack&KatiesMommy]

Have your red blood counts been okay? When I am anemic (and I tend to be anemic) I feel similar to what you are describing. Low RBC can cause your body to not receive the oxygen that it needs...causing windedness, tiredness, etc.

[peanut_8]

Hi Michelle,

I think your husband is on to something with the flu diagnosis. I've been struggling with it the past few days and can understand your tiredness and lack of appetite.

Apparently flu symptoms don't usually include vomiting or diarrhea in adults.

Influenza Symptoms

Influenza (also known as the flu) is a contagious respiratory illness caused by flu viruses. It can cause mild to severe illness, and at times can lead to death. The flu is different from a cold. The flu usually comes on suddenly. People who have the flu often feel some or all of these symptoms:

Fever* or feeling feverish/chills
Cough
Sore throat
Runny or stuffy nose
Muscle or body aches
Headaches
Fatigue (tiredness)
Some people may have vomiting and diarrhea, though this is more common in children than adults.

https://www.cdc.gov/flu/about/disease/complications.htm

Hope you start to feel better soon.
peanut

[michellecairn]

Jack&KatiesMommy,

I looked at my RBC and it looks like in September I dropped to 3.64 and have basically hovered around there since. I was 3.86 on Feb. 2nd. I will ask if maybe some iron would help at all.

peanut_8,
The only flu like symptoms I really have is the fatigue, muscle/body aches, and feeling feverish. I just can’t imagine that the flu would last this long. Especially since this is my 3rd week.

I’ve been doing so good - I managed to work 48 or more hours a week during December and was hopeful that my next scan would show I was stable and then I would try to pursue avenues to either have the ascites drained, or get some type of debulking done since I have been stable ever since starting the Keytruda last March.

Now I’m worried that my scan won’t be good and that things are going to get worse, and I don’t really want to go back to that place if I can help it.
My weight loss is concerning to me as well. Last year at this time I was at 210 pounds. My last weigh in I was at 150 pounds. The lowest weight I ever remember being at.

Anyways, I hope I start feeling better soon.

Best wishes to everyone and I thank you all for your input!

[WriterGirl1969]

Hi Michelle.
So sorry to hear you are going through such a rough time. I did have pneumonia once, and I recall it just knocked me completely out. Like I hit the bed and woke up 3 days later. I do also remember a sore spot under one shoulder-blade, and being fairly certain that I had a pneumonia.

More recently, I had an awful reaction to a new med my doctor put me on, and I just felt so darn groggy I couldn't even function. Just slept 9-10 hours each night, and then back to bed as soon as I called in sick and slept through until lunch time. I was achy and blah, and just couldn't stand feeling so off. I realized after a few days it might be the meds, looked them up and sure enough "If you experience extreme tiredness, call your doctor..." so I did. They acted like I might have the flu, but I'm not congested, no fever (just felt like it), no coughing, sneezing, etc. Against their advice, I halved my dosage, and although I felt better, I could still feel it hit me. Two days later I just stopped taking it and within 24 hours I was back to normal.

I note both of these because, as you can see, same types of symptoms can mean so many different things. I think you should push your docs to take a closer look at what's going on, and pay more attention to what you're feeling. Hopefully you can get some help. Feeling tired and out of it is horrible.

Hugs and Prayers,
Tracy

[chrissyrice]

Sure sounds like anemia to me ... drink orange juice and taking iron will help... not hurt you.. also have your Vit B12 and Vit D levels checked.

I have the same issues (not on chemo right now) but my bloodwork has been off for several months and finally my PCP checked out my tests and prescribed the above.

At least drink Emergen C+ for a boost too.

Chrissy

[michellecairn]

WriterGirl1969,
I so wish it were medications that were making me feel this way. Nothing has changed in my daily medications other than an antibiotic was prescribed for my underarm cyst, and I haven’t started taking it yet. I have been telling the doctors and nurses every week when I go in for fluids and they just look at me like a deer in headlights. Granted, it’s possible this is all cancer related, but my gut is telling me no.

crissyrice,
I see my oncologist again tomorrow for a follow up from the ER, but I will ask her to check my Vit B12 and Vit D. Historically I‘ve been low on Vit D, but I’m pretty sure I haven’t had that checked since before the cancer was found. I drink orange juice on occasion, but not as much as I should. Too much citrus/acidic things make my tongue shrivel up.

So I finally decided to go to the Walk-in clinic on Friday, where I had hoped they would be able to tell me something, but because of my cancer (my opinion only) I was whisked over to the ER.
They did a chest x-ray, chest CT, bloodwork, and tested my urine. They come back to tell me the pleural lining appears thicker than in August and that it is possible that it is disease progression. I asked if there were other ways the lining could become thicker and she said it was possible. I was instructed to follow up with my oncologist, but because I called so late on Monday I couldn’t get in until tomorrow.

And it’s a little crazy because I took a 1mg dexamethasone pill Saturday morning to see if it would help, and it seemed to, but the 4mg dex IV infusion now does nothing. Anyways, I managed to run around doing errands most of the day and overall I felt about 75% . Granted the downfall was less than 4 hours of sleep.

Sunday I took another one as my best friend was having her baby shower. She herself had gotten sick earlier in the week and had gotten a z-pac, but she had been having labored breathing all week as well. I’m sure a lot of it has to do with being 8 months pregnant and being asthmatic. She ended up in the ER herself after the shower and was admitted with the flu. I actually wasn’t aware that they could swab you for the flu. Just hoping that if I didn’t already have it I don’t get it, because I can just imagine what it would feel like on top of whatever it is that is going on with me.
The weird thing though was I tried watching a movie with my son around 7pm Sunday evening, and dozed off. I went to my room around 9:30 and dozed again. Around 11pm I was hungry so I went and ate, and fell asleep in the recliner until 4:30 am. Went back to bed and slept until 1:30pm.

I will keep everyone updated as I do have my CT this week to check the cancer and I will find out the results at my next treatment on the 23rd. I also see my general surgeon next Tuesday regarding the cysts under my left arm – he calls it hidradenitis suppurativa, but after getting cancer and researching my MHS6 mutation – the cysts seem to be caused by that.

And to top everything else off – I have been receiving Keytruda through the compassionate use program through Merck. I have to apply every year for continuation of the drug. My year is up on March 3, so I have one treatment left. I have reapplied for the drug again, but Monday I received a letter stating that I do not qualify for the co-pay assistance program which isn’t even the original program I was in prior. So I’m wondering if the social worker filled out the wrong paperwork, or if this is a step that has to be done in order to qualify for the compassionate use program. I will be asking many questions tomorrow. And hopefully my scans come back stable to show need for the medication, but if not – guess I will cross that bridge when I get there.

Thank you to everyone for all the suggestions and advice! Best wishes to everyone.

[TXLiz]

I don't have any wisdom for you but I am sorry you feel so sick and tired. I hope you feel better soon!