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Feeling generally awful and not sure why (updated 5/10)


teriw

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I wasn't even going to post this, because I'm not sure if anyone can provide any info (it's going to sound a bit vague).

Bill's just been feeling really bad for a couple weeks, apart from a couple days where he perked up. He just started on chemo again this week, so I can't blame it all on that. Although the chemo itself is making him nauseous during and just after) despite the pre-meds.

He's having a hard time describing it. Sort of flu-like, but worse. Sleeping a lot. Weak and unable to eat a lot. No vomiting, but coughing up the blood this week and last (which our doctor doesn't seem to think is anything to worry about since he did the CT scan the one time we showed a lot of concern about it -- we're not so sure). Sometimes he'll perk up in the morning for a couple hours, but then feel bad again by the afternoon and not really move off the couch (treatment is in the morning each day). I'll just add that he's one of those people who has an extremely high tolerance for pain and doesn't complain about physical problems, so when he says he's sick, he's sick.

I don't know if it's actually the cancer making him feel like this, or if some of it's the chemo, or something else that needs to be addressed. The symptoms aren't always the same. I feel awful because he hasn't had a "good" day where he had some energy in probably 3 weeks.

We go for treatment again today, and we'll of course tell the doc how he's feeling. They've been giving him extra hydration each visit, which has helped.

I guess I'm writing because I'm not sure what to be concerned about or what specifically I should be asking the doctor (or isn't that the doc's job?). Sorry if I rambled today...

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Teri,

I am so sorry. :(

I don't really know what this might be, but a few things come to mind that might be worth considering...

1. Is he hydrated enough? Even if he doesn't feel like eating, he might feel better if he has a wide variety of things to drink.

2. What are his blood counts? My dad had one of these spells, and he ended up transfusing, and feeling so much better.

3. Have you looked into anything about depression? It sounds like he is pretty open with you, so this probably isn't the case, but it is worthing checking into if you haven't already.

Blessings to you guys! I love the new pic!

Jen

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Teri,

I hate to bring this up. Charlie had the same thing--just didn't feel well at all. His CT scans showed that he was stable. However, we learned the hard way, that CT scans cannot pick up activity in areas like the bronchial tubes, trachea, etc. The area is too dense to see. The only way they figured out what was going on with Charlie was with a bronchoscopy. Perhaps since he has some bleeding, the dr. may want to consider taking a look.

This is hard stuff...I'm sorry he is feeling so poorly. Take care. Praying for you both.

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I know the treatments can have a cumulative effect and just make a body feel generally awful.

We noticed when my dad was at his worst was when his blood counts were low and he was dehydrated. It was always hard for us to tell since he did drink alot, but he was always dehydrated and low blood counts.

Getting rehydrated and blood transfusions helped him out alot.

I am hoping for some relief for Bill soon. I bet you feel helpless to help him too....I hope the doctor has some answers for you guys today.

Keeping you both in my thoughts and prayers.

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Hi Teri: Maurice is up about 2 hours in the morning, then back to bed until about 4pm, then up till 8pm. So a total of 6 hours up & the rest of the time in bed, feeling lousy. His last ct scan showed stable so we're thinking this is all treatment related. No nausea but has extreme fatigue & weak with a lot of joint & bone pain. I personally don't think he drinks enough fluids but he says he can't get it down. His appetite is zero. Hope Bill gets to feeling better real soon. Good Luck & God Bless

wendyr

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Hi Teri,

Everyone has given you great responses and I don't have anything to add, but I do understand because sometimes my husband just has no energy to do anything. Katie talked about the cumulative effect of the chemo and I know that is very true. I think about you guys every day and pray he will get through this. This SCLC is so unpredictable that as soon as we think things are good, BANG, something is not right again. My husband does tend to feel better when he's not getting any treatment DUH... It still amazes me that the cancer isn't what seems to be killing him, but the treatment. I hate it.

Teri and Bill, I will continue to pray for you both during this trial.

Laurie

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Thanks everyone. Unfortunately, I didn't get a chance to read most of your notes until we returned.

Doc ordered additional pre-meds for the nausea and added the steroid, which they hadn't been doing this round. He was very dehydrated on Monday when he started, so they hydrated him every day this week, except today because he actually felt like perhaps it was too much.

He's a bit better now. He's actually sitting at the computer writing, and he did eat a bit for lunch and finished a boost shake. Of course with all the lying around in one position, his back has gone out! Is there no end to it???

Tell me, how does one know that they need a blood transfusion? Is it something they check when they check the blood counts, or is it more that you show up sick? They always check his blood. And on Monday they took a few viles of it. Also, is the sodium level something that is typically checked, or only when a symptom suggests a problem?

He is scheduled to have an MRI of the whole chest and spine area.

I'll update again when I have some news. Hugs to you all...

P.S. Yes, Mary Colleen, that's our Mrs. Dickens. And yes, she's that tall!

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Maurice gets blood drawn before each chemo & a couple of times his white count was too low for chemo & had to be postponed. They also check his red blood count & have given him aranesp for it when needed however it seems to take a long time for the aranesp to 'kick in' usually 2 weeks or so. If Bill is getting chemo, they're probably checking blood counts prior to chemo to make sure his counts are in line.

wendyr

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Yes, he's always checked. He gets regular Procrit shots (got one yesterday). He's been having Neupogen shots after each cycle. Amazingly, the office manager at my doctor's office managed to get them to approve Neulasta just this once to see how he does on it. And his platelets are always good.

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Just wanted to add that they check if a patient needs a blood transfusion when they order a CBC (complete blood count). Just ask what labs they are ordering when they draw the blood. The CBC gives you the white blood count, red blood count hemoglobin and hematocrit among other levels. Then ask for the results. My Mom's doc runs a CBC, metabolic panel and a magnesium level each week. The sodium is checked in the metabolic panel. SCLC frequently causes a syndrome that lowers the sodium level. That's how they knew so quickly that my Mom had SCLC even before the biopsy. But it's also out of whack if a patient is dehydrated.

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Hi Teri,

Harry is going thru almost the exact same thing.

His chemo was postponed because of the infection and having to get the IV antibiotics for 4-5 weeks.

At first he swore it was the pain patch making him feel so bad, so he stopped using it. When that didn't work, he stopped taking the Iron pills. He's on several different meds for nausea, and none seem to ever completely stop the vomiting.

He also feels very weak...

One thing I found that he can eat, (and hold down), are those cheapy popsickles that come in a big net bag or big box, in different colors. (They look like long sticks..no fruit juice, not many calories, and I'm sure, no nutritional value either, but Oh Well).

Just wanted to let you know I'm thinking of you, and I know how you feel. It's hard not being able to "fix" things!

Your dog is beautiful! What breed is she? (Lab, Mastiff, Great Dane? Shetland Pony? :D )

Good luck to you guys,

Nova

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Teri, your post brought back memories of dehydration when I was on chemo. I remembered the problem as soon as I started to read, it was the worst feeling - just totally dragged out, someone had taken out all my bones and left me as a limp rag, I felt nausous and generally like crap.

Keep pushing the liguids as much as you can.......any kind of liquid, the popsicle suggestion was a good one. I found that when I was hydrated I could eat more.

Thinking good thoughts for Bill to feel better.

Geri

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Hi Teri!

Just sending positive thoughts to you and Bill. Hang in there! I know how hard it is when pinpointing the problem seems impossible. I know that the sodium level was a continuous issue with my hubby and can cause many problems, including the vomiting of blood (but I understand other things can cause vomiting blood too). The doctor didn't order the blood test that measured sodium all the time so I would ask if Bill has had that tested recently and what the result was. It is supposed to be in the 135-145 range (close to that anyway) to be considered normal.

I hope today finds him feeling better. Rest is a good thing for both of you, if you can sneak some in. Take care and I am always here.

Flowergirlie

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Teri, I can't add much to what has already been said by the other members. I do know that I had to have a blood transfusion (2 pints) because of low blood, and had to have iv fluids due to dehydration. Even though I drank as much as i could, I still got dehydrated. I was taking combination of chemo and radiation, and it knocked me to my knees. Barely able to function, but better now that I am off treatment for a few weeks until take scan on 25th this month. Hoping and praying cancer is in remissin, but won't know til then.

I pray for you and Bill that he will retain his strength and that the treatments will help him but that he can get off them for a while.

Barb

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I can give a little update. We got the results of the thoracic MRI (front and back) yesterday. (An aside - Bill says this test now tops his "things to avoid" list.)

It basically confirmed what we thought, which is that the main tumor is causing the shortness of breath (which I imagine is contributing to other physical problems as well). Doc also says it's almost certainly the source of the blood he's coughing up. Both of these symptoms have gotten worse over the past week or so. So we're on a slight change of plan, which is to add radiation to the mix to shrink the tumor. Back to the radio onc on Monday to get the details. Still continuing on the Topotecan.

How he feels overall differs from day to day (and hour to hour). Although, I would say that he's definitely better than he was when I first created this post. I did check the sodium levels, and they were good. I forgot to ask about the CBK, but I know they take viles of blood every other week or more.

Thanks for your thoughts and prayers. I'll keep you all posted.

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