Mom came to visit -- trying to understand symptoms

8junebugs · New User Joined: 19 May 2008 Posts: 8

Hi, everyone.
It's been a rough couple of months, although Mom's first post-chemo scans were encouraging. I can't get her oncologist to call me back (I'm out of state), and the only reason he wouldn't, generally, is if he's been asked not to.

Chemo is continuing once a week -- three "shorts," one "long," then a week off. Mom's experiencing some symptoms or side effects that the doctors can't seem to explain, so I thought I'd see if anyone else has had similar experiences in this battle.

Here's what she's got:

[b]Numbness and tingling in her feet and hands.[/b] She calls it myopathy; I can find some reference to this with patients on steroids (which she is), but...it's pretty bad. She has fallen at least once because she thought her foot was moving and it wasn't.

[b]Bloating, to the point that she "feels seven months pregnant." [/b]Her abdomen feels hard and pressing too hard hurts her. She hasn't gained back the 30+ pounds, according to the scale, but she looks like she has...all in her stomach.
[b]
Sweating. A lot.[/b] Especially on her head, where some hair is growing back, but not a lot, and not on top. Menopause doesn't help.

[b]Nosebleeds. [/b]She had two while here and says she hasn't had them much at all, but...to be very frank...she lies a lot. She goes through a lot of tissues, which is fine, but I'm curious...

[b]Fatigue and weakness that make her unable to walk through a store.[/b] We used a wheelchair whenever we could, but when we couldn't, she could NOT manage it.

I know chemo affects everyone differently, and I certainly don't mind pushing a wheelchair. I'm just trying to understand why she feels so awful if the chemo is, as the doctor says, working. She still doesn't sleep much and the coughing continues and seems to be getting worse. They can't find the fluid they thought was causing the bloating and the coughing, and they're doing an electrocardiogram next week (I think) to see if it shows something unusual.

Any thoughts?

Thanks in advance...

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1385

Hi Junebug,

Glad to hear your Mom's scans came back good.

There are many things that happen to a person's body while undergoing chemo. I don't know what particular drug she is on, but peripheral neuropathy is very common for people on certain chemo drugs. That's the numbing/tingling of her feet hands. Our doctor had my husband on B6 to try and ward off this problem, but it never happened to him. I'm sure others will stop by who have experienced this nasty side effect. Sometimes it can even hurt. I've seen some people go almost through a total round of chemo and only have it show up toward the end. Shocked

It can go away once treatment is stopped or it can stay that way. She has to be very careful with lessened sensation so she doesn't injure herself.

Again, depending on the chemo, nosebleeds are quite common, as are runny noses. Some therapies cause excessive bleeding, like Avastin. She just needs to keep the doctor apprised of this situation and seek ER help if she cannot get it to stop.

Chemo has cumulative effects. The more you have, the more fatigue sets in because it keeps knocking you back down. Recovery between cycles goes slower due to this and also lower blood count levels. Less hemoglobin, less oxygen circulating, more fatigue.

I have no clue about the bloating but hope they stay on top of tests to determine what is going on. Coughing often just is part of the deal for some people. Is she taking something like Mucinex to thin out the mucus so she can get it up easier? I've heard other people mention something called Tessalon Pearls (sp?) that helps to calm coughs for patients.

The doctor cannot call you back unless your Mother has signed HIPAA privacy papers allowing the doctor to discuss things with someone other than the patient. (If you are in the U.S.)

Hope this helped and good luck to your Mom on finding out about the bloating. Please keep us updated.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

8junebugs · New User Joined: 19 May 2008 Posts: 8

Thanks, PBJ. You know, one of the oncologists did tell me that the chemo effects would be cumulative, but I'd completely forgotten -- thank you for the reminder, and for the info on neuropathy.

The doctor has called me back in the past and I've talked to him in person. Whether she signed off formally on the HIPAA or just a note in her file...I'm not sure. But, again, my mom and I have some serious trust issues.

Sad

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1385

June,

She's probably trying to protect you. My niece is going through the same thing with her Mom -- definite lack of information. She's having to roll with the punches with little knowledge, but it's her Mom's choice and most of us protect our kids. I was pretty forthcoming with info to my kids because I'm a woman and wasn't the patient. Can't say that if it was me I'd be that open. My best friend didn't want to know anything about her cancer and just gave it all up to God.

So -- you can see that different people handle their cancer in many different ways. Any past issues will typically be magnified by a journey through the land of cancer because stress levels are high. Just do the best you can --- that's all you can expect of yourself. We're all human beings and we stumble and fall at the best of times in our relationships.

I hope for continued success with this regimen for your Mom.

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

sgodshall

My husband takes B6 for the neuropathy - check her feet often to make sure she doesn't have any wounds that she is not aware of. I had a patient step on a toothpick and not realize it was jammed up in his foot. Chemo can be cumalative or one round just hits harder. My husband did great on 2 rounds then the 3rd had him in bed for a week, then 4 and 5 went well. Advise her to rest when needed, her body is telling her to chill! Surprised

My husband also looks pregnant, the docs are always checking for acsites or pleural effusion. Hope things look up...
_________________
As long as there is Life, there is Hope.

Husband (44) with LC, mets to brain, lymph nodes and bones. Received Carbo/Taxol, currently in a clinical trail. Had WBR, stereotactic radiation to brain

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