Dad has SCLC and finished chemo - can't walk

[khawk]

Hi - My husband and I need some advice. His father was diagnosed with extensive stage SCLC in May. He went through 10 doses of radiation to the brain for a brain mets and 4 rounds of chemo. He never recovered from the 3rd and 4th chemo rounds so they stopped treatment. We have taken him to the ER 9 times since the 3rd treatment because he kept falling down. They always said it was dehydration, gave him fluids and sent him home. A few days later he falls again and he is drinking a ton. About a week ago he fell 3 times in one night and we took him to the ER and told them to admit him and figure out what is going on (this ER dr said it wasn't dehydration). The chemo dr says that it's not the brain tumor because it is 1/3 the size it was when he was diagnosed and had no trouble walking. So they kept him for 4 days and told us they would figure out what was going on. Never found anything and sent him home again. Right when he got home he fell and hurt his wrist (bone bruise). He fell 2 more times that night. We took him back to the ER yesterday and they told us we need to deal with it or put him in a home. He had 5 tumors when diagnosed and all of them are significantly reduced. He has his wits; he just can't walk well. He leans to one side a lot and we tell him to straighten up. He has no idea he is leaning. My husband thinks his core muscles are just shot because he isn't doing anything but sitting around or sleeping. We asked the hospital (VA) to put him in rehab for a few weeks and they won't. He won't accept going into a home right now because the only thing that seems to be wrong is his strength. We are doing what we can to try to strengthen his muscles but I don't think it is working.

Has anyone else had this problem after treatment : where you just can't walk and lose your balance a lot. I don't know if it could be some long term effect from chemo or radiation (he's been out of chemo for 5 weeks now and he is only getting worse). The strange thing is that some days he seems perfectly fine. He'll have one good day and then a bunch of bad ones.

If anyone has any advice or has experienced this, please let me know.

We are trying to get his chemo dr's to admit him into a rehab facility but it's the VA hospital and they aren't helping much.

Thank you

Kim

[recce101]

Hi, Kim, welcome to the community.

From what I've seen and read and experienced, I'd say that just about anything is possible as a side effect of chemo or practically any medication. Maybe not common, maybe extremely rare, but possible.

What does your father-in-law say about the situation, especially how he feels just before a fall? Does he say he feels weak or lightheaded, or that the room seems to tilt all of a sudden, or that the room seems to spin, or that his feet are numb, or that he suddenly loses control of a leg muscle, for example?

I've had all of these at one time or another, many of them from an inner ear disorder (Meniere's Syndrome) which I've had since 1994, long before cancer came into the picture. Aside from the poor hearing in my left ear, the other Meniere's symptoms are being controlled fairly well with medication, but I did notice some balance problems (tilting, not spinning) when I was on taxol and carboplatin last winter. Then during my 6th chemo cycle I got a bad case of peripheral neuropathy, probably from the taxol, and had to use a walker for a couple of days until a new medication took effect. Conveniently, we had a walker in the closet that my father-in-law had used about 10 years ago.

If you or your husband can sit with him at a low stress time and ask him to explain how things feel and look while he's walking, you might pick up some item of info that will help. A lot of these things are almost impossible for a physician to detect without some clues as to what things feel like from the patient's perspective.

And if he's not using a walker, I think he probably should. Tell him that it's probably just temporary. Mine was!

Best wishes and Aloha,

Ned

[khawk]

We will sit down with him and try to have him explain what he feels. He has trouble explaining it when the doctor asks.

He has a walker but he won't use it half the time. Right now he can't because of the wrist injury. There are times where he fell and I'll get the walker for him. He can hardly move his legs sometimes and the walker doesn't help.

[Welthy]

Khawk,

So sorry to hear about your FIL's problems.

I don't know how old he is, but my husband's muscles have atrophied quite a bit over the last year and he doesn't have problems walking from that.

I have seen another lc patient at our onc's office who was having weird things happen. He referred her to a neurologist. Sometimes it can be things that aren't even related to the cancer, chemo, or radiation.

I hope you and hubby can get down to the bottom of this issue for his Dad.

Regards,

Welthy

[Nova]

My husband got to the point where he was falling constantly ~ Almost every time he stood up, no matter how careful he was, or how slowly he stood.

He was hospitalized for it, and it ended up that he had infections. (Once in his heart, and once in his colon.) The very first time was from dehydration.

He also had to be taken off the strong chemo drugs. He only managed to have 4 treatments of Cisplatin and etopocide..

He is now on Taxol, and is doing a little better with it.

Prayers for your dad going up.

How are his blood counts?

Nice to meet you,

Nova

[khawk]

Thank you all for responding! Rudy had another fall last night about 11:30 - no injuries this time. He actually doesn't remember it today. Someone mentioned that he may be having seizures and we are going to ask the onc about that on Monday. I'm also going to ask about inner ear or if they can refer him to a neurologist.

The hospice nurse came out today to meet him and I told her what has been going on. She's baffled too.

My husband said that last night Rudy was sitting in the chair watching TV and his head was leaning to one side and he was drooling. Didn't look like he was sleeping. Prior to this he was getting around pretty well. After, when he went to bed, he had trouble walking again. So I wonder if it is some kind of seizure?

Nova - his blood counts are all normal now. His oxygen is still at 99%, which is amazing!

Hopefully we will get some answers Monday when we see the onc team.

Thanks everyone!

[lynn]

My Dad had similar symptoms in 2003. He just could not walk for no apparent reason. He was hospitalized for dehydrationand was ambulating with a walker in the hospital but after the hour ride to my home he could not walk. The physicians restarted a steroid he had been on and this temporarialy helped. We never found the cause and I recall asking the physician if it was Eaton- Lambert syndrome,(disorder that weakens pelvis and thighs) I was told that it probably was not the cause.

I know how frustrating this can be and I hope you find the answers you seek before anyone gets hurt.

Thinking of you,

Lynn

[enyaw061032]

Khawk, in reading your post about your father-in-law (husband's Dad), several emotions and suggestions came to mind.

l. First, is your Father in Law of the age where he can get Medicare?

2. It is unheard of how he was treated and how you were treated by the EM.

3. I highly recommend that you get a second opinion, and even a new doctor to take on his case.

4. I suggest gettting him referred to a neurologist, because I believe they specialize in these matters.

5. Get him referred to a rehab place that cares about their patients.

6. Even if you have to go out of town, get an unbiased diagnosis from a caring physician.

7. Medicare pays for rehab ordered by a doctor, so the VA should have nothing to do with this case unless he is not yet 65. If that is the case, you still need to proceed with the other suggestions to help him most. Any decent, caring doctor would not treat a patient the way they have him, and the hospital is a disgrace to tell you to deal with it.

My heart aches for him, because it should not be this way. He deserves better.

Keep us posted, and please consider these suggestions.

Barb

[DrWest]

This sounds to me like it may be from a neurologic paraneoplastic syndrome.

SCLC is a cancer that commonly has something called paraneoplastic syndromes as a complication. This is a situation where the cancer makes proteins that act as hormones, with varied and sometimes complicated effects. SCLC can cause any of several neurologic syndromes from proteins that can attack neurons in the brain, or sometimes receptors that control muscle function. A neurologist would likely be the most helpful way to get this evaluated and managed. Treating the underlying cancer is certainly one important way to approach this, but a neurologist could potentially give further information. I'm not surprised that Emergency Room physicians wouldn't have any idea how to approach these issues, as they are remarkably complicated and really need to be approached by a specialist.

-Dr. West

[frostdgf47]

I am sorry to hear about your father-in-law. My husband had the same thing happen to him. For about 3-4 weeks his gait was very wobbly. Then on night he got up to go to the bathroom and fell. He never walked again. The CT with contrast showed spinal cord compression due to tumors on the spine from Thoracic vertebrae 12 throught lumbar vertebrae 2. He has just finished 20 radiation treatments to the spine to help shrink the tumors on his spine. He has regained movement in his feet, but can't stand or walk. You might ask the doctor about any tumors or spinal cord compression the CT scan might have identified. I'm a registered nurse and believe me,this has really been a really hard time at our house.

[karenlaureti]

Hi,

Make sure you have him checked for low sodium. This is a major issue with SCLC and can cause very bad balance, trouble speaking correctly, unable to stay alert. My Father had this and it can be a real problem.

[Smallcell]

Hi. My father (62) went through the very same thing. He leaned to one side when he walked, fell often and had completed his chemo. Brain mets can be very deep, small or large and no matter what the size can rest on things that simply cause problems like you are describing. I would certainly get a second opinion, especially if he's had them to begin with. My prayers go out to you and your family.

[inadaze]

my father also had trouble walking after chemo his legs were never the same strength wise.He was dx on 4-02-2007 had chemo,radition and was doing great until 12-16-2007 he passed away 2-28-2007.His labs and scan on 11-28-2007 were good and the sclc came back with a vengence.This is a terrible disease everyone is in my prayers and I am only greatful my dad did not have to suffer long.God Bless..

[Barbb]

My sympathy to you and your family.

Barb

[Don]

In the mean time while your waiting on doctor appointments, have him do leg exercises. While sitting have him lift his legs and hold 10 seconds, then point toes forward and hold 10 seconds, then point toes back towards himself and hold 10 seconds. This exercise should be repeated 5-6 times and hour. This will avoid blood clots from forming and also help keep muscles active. Have him do arm exercies while sitting meaning lifting a 2-5 pound object such as a book. Deep breathing exercises.

All of this can be done while watching tv or visiting with other people. Remember the meds do help but he will have to exercise his body and if he cant then you pick up his legs and do it for him.

God Bless

Don

[ztweb]

Hmmm. Interesting post. I guess the first thing I thought of when I read your post was about the inner ear and balance. Could the radiation have done something there? I also wonder about the seizure idea someone had posted. I do know this...dehydration with radiation and chemo is super possible. Imagine the worst sunburn possible on the INSIDE of your body! Blah!

Please know you have my prayers!

Jen