Leptomeningeal Infiltration

Portal Forums Cancer Treatments / Symptom Management Patient Experiences Leptomeningeal Infiltration

This topic contains 16 replies, has 7 voices, and was last updated by  bob4beth 3 years, 3 months ago.

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July 27, 2014 at 12:20 pm  #1265164    

alexander

Hi,

First things first, a brief history. Two years ago my mum was diagnosed with liver cancer after an MRI. As it turns out, after a biopsy came back negative, a good course of IV antibiotics cleaned things right up. She had investigative surgery and they removed her appendix. They obviously tested it in a lab because it came back as ‘goblet cell’ cancer. She had chemotherapy, and biopsies on her liver and lung that came back negative.

Two years down the line, she started having debilitating back pain (which she had a history of), numbness of the saddle area, and a few other symptoms consistent with CES (caudal equine syndrome) – after an MRI she was told she didn’t have anything and there was nothing suspicious but that she had a bad UTI. Again, she had IV antibiotics and things steadied out for a few days, then it was back with a vengeance. Rince, wash, repeat, diagnosed with a UTI, MRIs say nothing suspicious whatsoever. After a while, and another couple of weeks in agonising pain, more antibiotics, and two more MRIs, they sent a fourth or fifth MRI away to another hospital and all of a sudden we got a phone call saying they wanted her in for radiotherapy as there were lesions on her spine. That same day she upped her morphine and the pain was greatly reduced but her walking was terrible. She went in, had it done, came out with her full mental faculties in tact but with arm pain and a prescription for gabapentin to control it (this only started since the radiotherapy).

Over the next week she became incredibly confused, barely new her own name, was taken in to hospital and given antibiotics and had a miracle recovery. That happened three times. Getting worse each time. I’m meeting her oncologist tomorrow and I’m suspicious of the diagnosis. No CSF tests, when I asked how far along it was (in the beginning) he said he hadn’t seen the scans. What questions do I need to ask him to help her out? She gets better with antibiotics! It’s been a hard 6 months.

July 27, 2014 at 12:24 pm  #1265165    

alexander

Sorry about cutting the question and description short, I was limited by the word limit. My main issue is that she comes home from hospital with all her mental faculties, then goes downhill quickly, stops drinking and gets incredibly confused and then goes back in, the antibiotics works a treat and she’s awake, way less lethargic, and significantly better. It seems to me that they’ve given this diagnosis, and then any other issues are ignored because they see her as somebody who is going to die. I’ve no real confidence in any of their given diagnosis. Is that understandable considering how she was diagnoses with liver cancer and then it wasn’t, then diagnosed with lung cancer and the biopsy came back negative.

July 27, 2014 at 1:18 pm  #1265166    

Tom Norkunas

Hello, Alexander, so sorry to hear about your mum’s troubles.

I’m just a member here who’s wife has cancer, I have no special knowledge but I sure read all the posts here.

Is it possible that your mother is over medicating herself, then goes into the hospital where presumably there’s better control, she stabilizes, is released and the cycle repeats?

Just a thought that popped into my mind when reading your posts.

My last boss was named Alexander (Sandy), he hailed from Hurlford in Scotland.

Tom


Wife Lucy DX stage IV adenocarcinoma NSCLC 11/13, T2AN2M1A. Right lung tumor 3.8 cm, nodes and plueral fluid, SUV 5.2. Pluerodesis to deal with fluids – success. EGFR wild type, ALK-. 4 rounds of carboplatin, paclitaxel and bevacizumab, tumor 2.7cm, stable. 2/14, started ECOG 5508 bevacizumab arm 2/18/15 progression. 3/3/15, two brain mets, ineligible for Roche MPDL3280A “OAK” trial – stereotactic surgery to brain mets, pemetrexed second line therapy.

July 27, 2014 at 1:29 pm  #1265167    

alexander

Hi Tom,

Thanks so much for the reply. She definitely hasn’t been overmedicating herself I’ve been giving her the medication myself. However, this time that she went in she was said to have poor kidney function. However, after several days on a drip (with no IV Antibiotics) that sorted itself out but the confusion didn’t. I nagged and nagged about antibiotics, then they put her on them and her mental state has really started to improve. It gets worse with tiredness, but I guess that’s normal. I just can’t see how, if it is the cancer causing the confusion as the doctors continually intimate, how IV antibiotics and being on a drip can transform the fortunes of somebody who essentially is like a dementia patient one minute, to a fairly normal (if not very mobile) person.

I’m wondering if the entire thing isn’t a severe infection. Or, if she does have mets in the spinal fluid, at least an infection responsible for doing this. I just want her to be as well as she can be with the cancer. I can’t stand the thought that she’s not being treated for the other issues because she’s being written off.

What I’d love is somebody more knowledgable to give me some advice as to what questions I can ask tomorrow when I meet the oncologist. He seems to see cancer no matter what scan he looks at. If there’s a spot, it’s cancer to him. I can’t second guess him, but I have observed her for 6 months solid, so I know how she reacts to certain drugs. If the cancer is there, it’s not the only thing. I’m sure of it.

July 27, 2014 at 6:09 pm  #1265168    
catdander forum moderator
catdander forum moderator

Hi Alexander, I’m so sorry to hear of your mum’s problems. I don’t know how helpful we can be without having more info, however that seems to be a problem in itself. Too our oncologists specialize in other types of cancer add to that it’s pretty unusual to have ‘goblet cell’ cancer and unusual for it to met outside the appendix. One thing I can attest to is that dx can be difficult to impossible without causing more damage than good.

As a caregiver myself and not a health care pro I’d be hesitant to leave tomorrows appointment without a better understanding of her doctor’s explanation of why your mum gets better after a course of antibiotics. Is it not possible that she have infection and not cancer?
How did the doctors dx Leptomeningeal infiltration? Read here for more,
Why is it thought the cancer recurred and not something else? It’s not so unusual for cancer to recur after 2 years but it’s worth asking.

A second opinion is helpful in difficult situations.

Just a thought and not asked for, lepto is a complication that has little to no tx that can be of benefit. If a person has lepto it is very possible that focusing on comfort care is the best tx and not at all giving up.

All the best,
Janine

July 27, 2014 at 6:28 pm  #1265169    
JimC Forum Moderator
JimC Forum Moderator

Hi Alexander,

Having experienced my wife’s lepto first hand, and being familiar with many other GRACE accounts of it, it would be very unusual for your mum’s severe symptoms to come and go so rapidly, and antibiotics would not make a difference. I would second Janine’s suggestion that you ask her doctor to explore other possibilities, describe how lepto was diagnosed (the only definitive diagnostic method is to perform a spinal tap to withdraw spinal fluid and test it for the presence of cancer cells. Finding lesions on her spine doesn’t mean there are cancer cells in the fluid.

You state that the symptoms return and she stops drinking; is it possible that her fluid intake is reduced before the symptoms return, and that a contributing factor is dehydration? That can cause some significant symptoms.

Again, I agree with Janine that a second opinion may help to clarify the situation, even if the second doctor confirms the diagnosis. That doctor may explain the diagnosis more clearly and completely.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

July 27, 2014 at 6:43 pm  #1265170    
catdander forum moderator
catdander forum moderator

I forgot to add the links about lepto so here are a couple. Too I wanted to say that with cancer symptoms don’t normally come and go as you’ve described your mum’s doing with the antibiotics.

Most of the forum threads on lepto go to this forum that also include brain metastases.

http://cancergrace.org/forum/lung-thoracic-cancer/lung-cancer-complications/brain-metastases

This is a comment Dr. West made about lepto a few years ago. Unfortunately it’s not changed for all except a small percentage of lung cancer patients with a specific mutation. “There really is no particularly effective treatment for leptomeningeal carcinomatosis, I’m afraid. I treat it in the setting of lung cancer, not breast cancer, but I and most of my colleagues most commonly recommend against treatment other than a focus on a patient’s comfort. Unfortunately, leptomeningeal carcinomatosis is just a complication for which we haven’t been able to make good headway.” http://cancergrace.org/topic/leptomeningeal-infiltration#post-1265168

July 27, 2014 at 6:54 pm  #1265171    
Dr West
Dr West

Alexander,

I don’t have much to add here. Your mother’s case sounds very complex, far too complex for us to hope to make sense of over an internet-based discussion. As Jim noted, leptomeningeal involvement with cancer is very unlikely to improve readily with anything, particularly antibiotics. I’m having quite a bit of trouble making sense of what might be going on with your mother, and it may be that your mother’s doctors don’t really know either.

I think it’s worth having everyone recognizing that doctors, even the best doctors at the most renowned institutions, don’t always have a clear diagnosis of every patient’s most complex issues. Having trained at some of the most illustrious institutions, I can assure you that baffling cases exist everywhere and that it’s largely a product of the idealized view of the field of medicine, probably caused by a combination of the medical community and the media together, that has led to a sense that doctors know everything and can treat everything. It wasn’t more than 75-100 years ago that doctors knew almost nothing about the mechanisms of disease and had almost no effective capacity to treat it. We’ve come a long way since the advent of antibiotics, chemotherapy, huge advances in radiation, surgery, etc., but I think people really need to recognize that one potential explanation for not getting a clear answer of what is happening is that nobody on this earth really knows.

Good luck. I hope you do get a clear explanation, but I wouldn’t presume it’s being withheld or that doctors who can’t explain extraordinarily complex cases are just bumbling around.

-Dr. West

July 27, 2014 at 10:05 pm  #1265175    

bob4beth

Alexander

2 symptoms you mentioned: difficulty walking and mental confusion are consistent with LMC, but they could also be symptomatic of something else. If a spinal puncture has not been done I would recommend they do so only as a layman. Other symptoms to look for are headaches and incontinence. Maybe another opinion would be wise at this point.

Good luck and I wish you and your mum the best.

Bob


Sept 2012 my wife Beth was, 64 year old non-smoker dx stage 4 Adinocarcinoma NSCLC EGFR + with mets to liver, bones and brain. Sept 2012 operation to replace right hip damaged by bone met. Sept 2012 5 DVT found in legs. Started Lovinox. Oct 2012 started Tarceva 150 mg per day. January 2013 surgery to stabilize right femur followed by 10 radiation treatments. April 2013 radiation treatments to left femur. May 2013 dx LMD. Started pulse dosing Tarceva 1,500 mg/wk. Sept 2013 we lost Beth.

July 27, 2014 at 11:35 pm  #1265176    

alexander

Thanks so much for all your replies. I’m blown away by the response and the time you’ve all taken to reply to me.

I wish I could give you more information, but I can’t; the communication has been poor. Most of what I know has been either third hand of via nurses looking at a screen. It’s frustrating because I know how much better she gets after fluid and antibiotics. I don’t want to appear to be in denial about her illness, but having watched her go up and down I think it’s fair to ask serious questions about whether or not it’s her illness causing the symptoms.

She has been on a lot of dexamethasone but that doesn’t seem to do anything, it’s the antibiotics that make the difference. It baffles me why the doctor doesn’t say ‘hey, maybe this is worthy of further investigation’. I’m definitely going to ask for a second opinion and for a spinal puncture to test her CSF.

Thanks again.

Alex.

July 28, 2014 at 8:49 am  #1265177    
Dr West
Dr West

Both of those sound like appropriate requests. They may provide real answers, but I think it will be hlpeful to seek further information regardless.

-Dr. West

July 28, 2014 at 8:56 am  #1265178    

Zemswife

With both of my elderly parents they would have extreme confusion from dehydration and from UTIs. Whenever my mom would have the confusion the first thing that was done was a UTI and as soon as antibiotics were started there would be a complete turnaround on her mental abilities. Could it be that your mom is just not getting rid of the UTI completely?

Louise

July 28, 2014 at 8:21 pm  #1265182    

bob4beth

Alex

It all sort of blends together after almost a year but I recall during Beth’s last 5 or 6 months, and around the time of the LMC diagnosis, numerous trips to the hospital for IV injections. They were almost always restorative for at least a few days. I do not recall what was in the IV fluids. This was in addition to her pulse dose Tarceva and numerous other medications. I believe dehydration and poor nutrition take a toll both mentally and physically be it late stage cancer or LMC or both. I’ll keep praying for your mum that she does not have LMC. Bob


Sept 2012 my wife Beth was, 64 year old non-smoker dx stage 4 Adinocarcinoma NSCLC EGFR + with mets to liver, bones and brain. Sept 2012 operation to replace right hip damaged by bone met. Sept 2012 5 DVT found in legs. Started Lovinox. Oct 2012 started Tarceva 150 mg per day. January 2013 surgery to stabilize right femur followed by 10 radiation treatments. April 2013 radiation treatments to left femur. May 2013 dx LMD. Started pulse dosing Tarceva 1,500 mg/wk. Sept 2013 we lost Beth.

August 16, 2014 at 6:58 am  #1265438    

alexander

Mum died. It was incredibly difficult watching her go. We pushed for a post-mortem and I got the full report back today. It says the meninges was normal and that she died from infection (septicaemia). Not sure which way to turn.

August 16, 2014 at 8:20 am  #1265439    
JimC Forum Moderator
JimC Forum Moderator

Alexander,

I am very sorry to hear of your dear Mom’s passing. Cancer can create many difficulties beyond the direct effects of the growing tumors, and in such complex situations it is often not easy to determine the cause of a particular set of symptoms.

My heart goes out to you and to your family, with hopes that you may find peace and comfort in the days ahead.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

August 16, 2014 at 6:09 pm  #1265445    
Dr West
Dr West

I’m so sorry. Jim’s very right that there can be several things going on. It can be very difficult if not impossible to distinguish a primary cause. Regardless, I don’t know that it really matters if the doctors treated the best they could — with advanced cancer, it’s often one thing or another when the cancer is progressing.

Please accept my sincere condolences.

-Dr. West

August 16, 2014 at 8:37 pm  #1265454    

bob4beth

Alexander

Please accept my sincere sympathy on the passing of your mother. I know how hard this is for you and your family. Alexander I know this is especially difficult for you because early on you suspected infection and it seems your ideas were dismissed. It’d horrible what happened, but it’s over and your mum is now at rest after a prolonger and valiant battle. Turn to your family, turn to your friends. Turn to your clergy. Thru them you will find God. Peace be with you. Bob


Sept 2012 my wife Beth was, 64 year old non-smoker dx stage 4 Adinocarcinoma NSCLC EGFR + with mets to liver, bones and brain. Sept 2012 operation to replace right hip damaged by bone met. Sept 2012 5 DVT found in legs. Started Lovinox. Oct 2012 started Tarceva 150 mg per day. January 2013 surgery to stabilize right femur followed by 10 radiation treatments. April 2013 radiation treatments to left femur. May 2013 dx LMD. Started pulse dosing Tarceva 1,500 mg/wk. Sept 2013 we lost Beth.

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