Another Lepto Question - 1268395

36 posts / 0 new
Last post
sherrys
Another Lepto Question - 1268395

I am so confused. As you know, in November I had another singular brain met. It was treated with cyberknife. I had scans last week, with my brain MRI being Thursday. It showed a small lesion, first thought to be scar tissue, but definitely a new met. I am pretty unhappy about that. I feel that it's the beginning of the cancer invading my brain, and I'm feeling that my time is limited.

I've been complaining of headaches since September. They have not gotten worse, but I have a headache every day. First they were thought to be from a concussion. Then my PCP said they were cluster headaches. Some days they are bad enough to take Imetrex and other days I take Tylenol or nothing.

When I saw the radiation oncologist today to discuss what to do with the new met, he and his colleagues told me they were very concerned about the headaches and feel that they could be from Lepto. I was floored. So I am having a lumbar puncture on Monday. I asked about the rate of false negatives and they said there were other things they could read in the spinal fluid to give them a better result. I asked if anything showed on the MRI and they said no. So why are they thinking Lepto? I know that's a question I should've asked at the time, but truth be told, I don't think I heard much after they threw that one out there.

Is it possible to have headaches for 6 months to ultimately find they are from Lepto when no other symptoms are present? How long can a person have it and be undiagnosed? If I do have it, wouldn't I have SOMETHING else going on?

Thank you in advance.

JimC
Wow Sherry, I'm sorry they

Wow Sherry, I'm sorry they have you so worried about this. From what I've seen from patients with lepto here on the GRACE site and my experience with Liz, I would not expect that diagnosis when your only symptoms are headaches and there is nothing that appears on a scan. Lepto is usually suspected when there are a variety of neurological symptoms for which a single cause is not obvious, but recurrent headaches can have a wide range of causes. LMC also tends to progress rapidly, and if the headaches have not really worsened since September, that would not be typical. Also, the fact that the pain is much worse on some days while on others you don't take any pain meds also is not typical of any type of cancer pain, which left untreated usually gets worse over time.

I hope that you will be able to get some answers that don't involve LMC or cancer. We will be keeping you in our thoughts.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

sherrys
Thanks Jim. Are there

Thanks Jim. Are there questions I should be asking prior to having this test? From what I've read here, I'm not really sure what it's even going to accomplish. If it's negative, then we just move on? What's the point?

catdander
I think that's a good

I think that's a good question, what's the point, and why the jump from headaches to lepto, especially if you have a new met in the brain. A lumbar puncture isn't without risks. Is is possible they're doing it to satisfy you? Well let's see what our faculty have to say.

Thinking of you dear Sherry,
Janine

JimC
I would certainly ask again

I would certainly ask again about false negatives, what else they might think they could find and what they will do if they find nothing - repeat the procedure?

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

sherrys
Janine, I didn't want or ask

Janine, I didn't want or ask for it so I don't think it's to satisfy me. I asked for referral to headache specialist. Lol. I truly hope someone on faculty will have time to respond.

Jim I asked what happens if it's negative and they said they'd proceed with the CK to the new lesion. So it sounds like they're expecting it to be positive which makes little sense.

carrigallen
I agree with JimC, that the

I agree with JimC, that the time course of headaches for over six months does not fit with the rapid, progressive course of leptomeningeal cancer.
It sounds like the radiation oncologist has simply ordered this out of 'an abundance of caution'. It is true that LMC is not always easy to see on MRI brain. I think if the MRI and lumbar puncture is negative, it is reasonable to pursue other causes for headache.

sherrys
Thank you to everyone for

Thank you to everyone for your replies and special thank you to Dr. Creelan. I spoke with the radiation oncologist today. He said the tumor in November and this newest one are both located very close to the dura, leading him to question if they are blood tumors or Lepto. Either way he feels we are losing control of the disease. He said the reason he's confident with one spinal tap is he's more interested in the CSF pressure and if there's any inflammation in the fluid. So, I will be having the tap Monday and praying and praying it's not Lepto. I'm not ready to go. I feel too good!

sherrys
If the CSF opening pressure

If the CSF opening pressure is normal, is that enough to rule out Lepto?

catdander
Unfortunately there's no

Unfortunately there's no absolute way to diagnose lepto except to capture cancer cells in the spinal fluid however that test can be up to 50% false negative. An MRI can show possible growth but isn't usually definitive. Sometimes a diagnosis is made purely on symptoms that can't be explained any other way.

Am I mistaken or did Dr. West note that headaches alone aren't usually suspect to be from lepto?

sherrys
I do believe he's noted that

I do believe he's noted that in the past. My dr is suspicious due to headaches and the location of the tumor. But he told me that even in cancer cells don't show, he was looking for the CSF opening pressure and inflammation. I know the opening pressure is 18, so I wonder if we are on the way to ruling it out. Wishful thinking! :)

Dr West
No, variables other than the

No, variables other than the presence or absence of cancer cells in the CSF are only modestly suggestive indicators either way. Sorry there's no easy way to be reassuring.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

sherrys
I haven't heard from my

I haven't heard from my doctors but my results have been posted on my health trak. It seems the answer is rather clear. My protein level is 261, both my red and white blood cells are 16 and the glucose is 11. Other values are normal but everything I've read seem that the numbers mentioned confirm the diagnosis.

JimC
Sherry,

Sherry,

I'm sorry to hear those results, but as Dr. West said those findings are only "moderately suggestive" of LM, so we're still hoping for an alternate cause of your headaches.

And we will be keeping you close in our thoughts as you discuss this with your doctors.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

bobradinsky
Sherry

Sherry

Headaches can be an early sign of LMD. In my wife's case that was the first indication, but the headaches were accompanied by a change in gait, some memory lapses and slurred speech. The spinal puncture confirmed high pressure and the presence of cancer cells so there was no conjecture. The disease progressed very quickly - less than 6 months.

I am hopeful that since you have shown no other symptoms the headaches may be attributed to something else. I know how worrisome this must be for you. I will keep you in my prayers. Good luck.

Bob

sherrys
Thanks, Bob.

Thanks, Bob.

Apparently headaches are my only symptom. The lumbar puncture confirmed the diagnosis. Cancer cells were found in the spinal fluid. I will start wbr next week and I don't know what will follow.

The cytology report is saying atypical malignant cells which led me to question whether it's from the breast or lung cancer. I'm not sure if treatment is identical.

Now I have the task of wrapping my brain around how I have a slight headache daily to I am dying. It doesn't seem real.

catdander
Oh Sherry, You know I can't

Oh Sherry, You know I can't imagine how you feel and words fell. Do you really have to wrap your head around this? I think denial of some kind or degree is a hopeful plateau on which to hold your nerve.

The difference between lung and breast cancer I can think of is that since you have EGFR mutation in your lung cancer an option is to try pulsed tarceva. It appears to be successful for some.

Breathe (((((hugs)))))
Janine

JimC
Sherry,

Sherry,

As Janine said, there just aren't any words... Lisa and I will be keeping you in our thoughts, and we hope you sail through WBR smoothly.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Sherry,

Sherry,

I'm so sorry, so disappointed. But it's also important to remember that there is a lot of variability around how things go, and even though it can behave as a very fearsome, fast moving complication, it doesn't always follow that pattern. The fact that you've had headaches for months underscores that your situation isn't "typical" for leptomeningeal carcinomatosis.

Still, I don't want to minimize it. I know I speak for many here who are heartbroken to learn this news. We all feel that this disease is crushingly unfair.

Thinking of you,
Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

bobradinsky
Sherry

Sherry

I am so sorry for the diagnosis but please do not give up hope. Dr West is correct that there is a great deal of variability and the fact that you are not experiencing any other symptoms is in my opinion a very positive sign. While my wife, Beth, was one of the unlucky ones, there are other examples of people who deal with it quite successfully. Let's hope you follow Valeria Harper's footsteps. She is still going strong after 4 years. Hang in there, think positive thoughts, and let us know how you are doing if and when you feel like it. We are all rooting for you.

Bob

dbrock
dbrock's picture
Sherry -

Sherry -
So so sorry to hear. But like everyone else here - I say don't give up hope, and don't let even any small dose of fear keep you from concentrating on all the positive things around you. Listen to yourself and - as Janine mentioned - a healthy dose of denial is sometimes great. and breathe.

many hugs -
Denise

Visit my bio here.

sherrys
Thank you all for your

Thank you all for your replies. I can't tell you how much it means to me. Dr. West, your reply was so very reassuring - thank you.

Bob, it's so hard to accept because I have been having headaches for months. They are not worse, nor are they better. I have no other symptoms. At first it seemed ludicrous to me to even have the test.

Janine and Denise - I think ignoring this is the best option! I told my family that was my plan. lol We used to have a beautiful lab that would close his eyes if he was caught being bad. We would say "look at me" and he would shut his eyes tight and turn his head. I guess his train of thought was "if I can't see you, you can't see me." So if I close my eyes real tight and ignore it, it can't possibly find me, right? :)

I am holding my nerve so very tightly right now, and it helps so much to have all of you here with me.

A few more questions if I may? My cytology report states "suspicious for metastatic adenocarcinoma". Are all cases of LMC adenocarcinomas? If not, does it make a difference in treatment? And last, would it be possible to find out thru a lumbar puncture if the cells are from the breast or lung and does it make a difference in treatment?

Thanks so much!

bobradinsky
Sherry

Sherry

Have you discussed pulse dosing tarceva with your oncologist after the WBR? This is purely from a layman's perspective but I am hoping the primary is breast rather than lung. I think Valerie Harper had primary breast and she is doing so well. Perhaps breast is more indolent. I'm just snatching at straws. I want you to do well. And, if I may, a final word of advice, as long as you are feeling well make the most of every good day you have. Greet the sunshine, the moon and the stars. Do what pleases you, give and receive love freely and enjoy this beautiful world that is ours for however long you possibly can.

Bob

catdander
Sherry,

Sherry,

Most breast cancers are adenocarcinoma and start in the ducts or lobules. When it moves to the spinal fluid like lung cancer there aren't any particularly effective treatments.

I hope this remains indolent.
With lots of love and hugs,
Janine

Dr West
The pathologists can

The pathologists can potentially look for proteins on the cancer cells, a process called immunohistochemistry (IHC) staining, that could give a good clue whether the cells of origin are of breast or lung tissue origin.

Results with LMC in breast cancer are a little more favorable overall, and there is more momentum for potentially treating, potentially with chemotherapy administered directly into the spinal fluid through an Ommaya similar, similar to a portacath that goes under the scalp and has a reservoir outside the skull to hold chemo that infuses in.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

marisa93
Sherry,

Sherry,

I am so, so sorry to hear this. I was hoping the news would be better! I also want to echo the others in saying don't lose hope and enjoy life to the fullest! It seems like a good(I know there is really no "good" in this at all) thing that headaches are your only symptom. I hope it stays that way and they dont get any worse for a long time! It has been my understanding that Lepto from breast cancer primary is not as aggressive and I am hoping that is the case for you!

As Jim said, we will be thinking of you and your family and wishing you all the best! Yes, keep your eyes closed tight my friend!!!!

(((hugs))),
Lisa

sherrys
Hello Everyone. It's been

Hello Everyone. It's been awhile since I've been here so I wanted to give you an update. I finished my wbr 3 weeks ago today. It has been a nightmare. I was hospitalized 3 times for fluids due to throwing up, and I don't feel like I'm getting any stronger. My left leg, left arm, and across my back went numb during the treatment and haven't gotten any better. This was an extremely hard treatment for me.

I go tomorrow for a brain MRI to see if these symptoms are disease progression or just radiation. I'm obviously hoping it's radiation, but really don't believe that it is. So please keep me in your thoughts and prayers tomorrow!

catdander
It's good to hear from you

It's good to hear from you Sherry. I think of you daily with hopes for you comfort.

With as much love and hugs as can be had,
Janine

Dr West
I'm so sorry it's been this

I'm so sorry it's been this difficult. I sincerely hope things get better.

Thinking of you.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

JimC
Sherry,

Sherry,

You are always in our thoughts, and will be today with hopes for encouraging scan results. I hope your symptoms will improve soon.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

dbrock
dbrock's picture
Sherry - thanks so much for

Sherry - thanks so much for the update.
Like everyone else here, I am thinking of you and truly hoping things improve. I know your family is rallying around you and you have the best of the best at your side every moment. Many hugs, much strength, and lots of love ...

Denise

Visit my bio here.

bobradinsky
Sherry

Sherry

I too am thinking about you and hoping things get better. I know how difficult things are for you right now. You just have to hang in there. There are a lot of people rooting and praying for you.

Bob

sherrys
Hi Everyone,

Hi Everyone,

My MRI went very well - no sign of either tumor and no sign of active lepto. However, I did have a spinal MRI due to the symptoms I was experiencing. It turns out that I have 3 spinal tumors - 2 in my cervical area and 1 in the lumbar area. As of now, I have no symptoms of those tumors but they are clearly lepto progression, which we all know is not good news.

I see my neurologist tomorrow and will see what he recommends, but I can't imagine that it's much.

So, I spent a week happy with my brain MRI results and now hit another pothole.

Holding my nerve, oh so tightly.

bobradinsky
Sherry

Sherry

Is it possible that the spinal tumors you mentioned are just that - tumors, and not LMD progression? My wife had several spinal lesions but they were not related to the LMD which effects the spinal fluid and meninges. Your oncologist should be able to clear up that matter. I'm hoping it's just bone lesions which can be treated with radiation.

Happy you are doing pretty well and praying the LMD is not progressing.

Bob

catdander
Hi Sherry,

Hi Sherry,

I'm glad you're symptoms are behaving and hope your appointment goes better than you expect. Know that I'm helping you hold your nerve from here in Birmingham.

With ((((hugs))))
Janine

marisa93
Hi Sherry.

Hi Sherry.

I'm glad your brain MRI went well! But, I'm sorry about the spinal MRI. It's good that you are having no symptoms from them! Always be grateful for the little things, right? I hope your appt went well We are thinking about you and your family, take care.

Lisa