It is with a torn heart that I have to tell you all that Vicente was diagnosed with lepto today. The radiation on his spine last July did not work, and his spine in full of leptomeningeal tumors. He is going to have further radiation on the new tumors on his spine, then do pulsed Tarceva at 1500 mg a week.
His brain MRI and Ct chest/pelvis were clean.
So, my question is, and I realize that one can only speculate, what happens when a person has lepto in his spine, but nothing showing up anywhere else? Although with his nausea, I suspect there is brain involvement that isn't showing up on the scan. Will he have a catastrophic spine event, or will he drift into coma like regular lepto victims? I didn't want to ask his doctor such a horrific question in front of him. I am so terrified of watching him suffer any more than he already is.
Blessings to all,
Fri, 09/27/2013 - 21:48
I can only imagine how crushed and devastated you are. Very sorry to hear this. I've known four people who developed LMC. Each was entirely unique in the way they went and the length of time they survived. For most there was eventually the time they could not hold on to anything, and they would lose all balance and be unable to walk/stand on their own. They could still be alert and coherent, but just have lost function in their legs. Three of them maintained continence and bowel function to the end. One friend's Lepto invaded the nerves in her spine. Her brain was fine but the complication presented first as back pain that couldn't be contained with oxycontin to pain throughout her entire spine that eventually required epidurals, pumps, and complex cocktails of painkillers. She could not go home because there was no possible way her pain could be controlled outside the hospital.
I hope pulsed Tarceva is effective and gives you more time to come to grips with this diagnosis. I am so sorry for this - you have been through so much already. Sending you strength and endless reserves.
Keeping you in my thoughts,
Sat, 09/28/2013 - 06:14
How kind of you to respond when you are fighting your own battle with this beast.
I do better when I have knowledge; my imaginings add to my torment.
As of now, he has no balance issues. He's weak and sleeps quite a bit, but then he will get up and mow the lawn. He has had pain since the beginning of 2011, and I believe he must have a pretty strong pain tolerance. He is on strong vicodin and takes extended-release morphine at night. The oncologist mentioned switching him to another drug when he pulses the Tarceva. Bowel and bladder are working fine. The doctor was surprised at Vicente's PS considering what's going on his spine. The most advanced tumors are at L4/L5 and the conus.
We have been expecting this dx since the path came back on a tumor which was removed 4/15/13. Everyone thought it was a neurofibroma, but it was adeno. So, we knew it was a matter of time.
How are you? Are you getting into the Anti-PDL1?
You are in my prayers, dear lady.
Sat, 09/28/2013 - 10:22
Holly, How devastating this is. I was so hoping you and the doctors were wrong in the predictions of lepto. I wish I could do or say something that would help. I'm glad Jazz was able to give her varied perspective though I so hate that you, Jazz, have had to see this in your friends. Easily the worst part of loving people with lung cancer is we lose too many wonderful friends.
Love to Jazz, Holly, and Vicente. You with all stay very close,
Sat, 09/28/2013 - 11:20
I know how devastated you are over Vicente's LMC diagnosis. Beth also had a number of spinal lesions. We radiated one that was rather large and appeared on T-12. Toward the end her MRI's showed a number of compression fractures in her spine that really ratcheted up her pain. I may be wrong and one of the Docs can clarify, but I never considered the spinal tiumors as part of her LMC. My oncologist and radiology oncologist led me to believe that Lepto is more like a cancer coating of the meninges of the brain and spinal cord. I did not think the lesions or tumors were necessarily part of the LMC.
The neurological symptoms started gradually with memory and cognitive issues, altered gait and balance issues, urinary incontinence, speech problems, swallowing issues, and headaches - all gradually coming on and not necessarily in that order.
I hope someone can explain if the bone tumors are bone mets independent of LMC or a manifestation of LMC.
I will pray for you and Vincente and urge you to take full advantage of whatever pain and fatigue free time you have together. You are not traveling this path alone.
Sat, 09/28/2013 - 11:34
Thank you for your prayers; you are in mine.
The tumors that Vicente has in his spine are intradural extramedullary, not in the bone. They are called leptomeningeal tumors on the MRI report. As I understand it, in lung cancer, the cells form tumors like "tree bark" and can indeed form solid tumors inside the dura. I truly wish this weren't the case.
Sat, 09/28/2013 - 12:19
I'm very sorry to hear that sad news.
As you probably know from reading the discussion forums, I do try to be as honest as I can be about what to expect, even if it's an answer that I don't want to give and nobody wants to hear. But I also believe that it's important to acknowledge what we know and what we don't, and I really agree with the assessment by Jazz that we really can't know what to expect because LMC can be so variable. I wish it were possible to prepare by knowing what you to expect, but I think you need to savor the good times and hope that you have many more. Thinking of you.
Sat, 09/28/2013 - 15:06
Thank you very much, Dr. West,
I agree. And what Jazz said really sums it up.
It is much nicer living in the moment than to imagine the future. I have three loved ones right now loving with lung cancer, two of whom live with me. I just got off the phone with my step-mom who also has it. This certainly teaches one to appreciate every good thing. I'm sure you know this as well, doing this on a daily basis.
Sat, 09/28/2013 - 19:03
I am very sorry to hear of Vicente's diagnosis. Though I walked this same path with my wife, I don't know that I have much to add to what has been said already. Her symptoms were very similar those of Bob's wife Beth, but my wife's last MRI showed what the radiologist called "innumerable" brain mets. So I have no way of knowing which of her symptoms were caused by LMC and which by the brain mets.
Regardless, I echo the sentiment that you should just enjoy each moment of the quality that you and Vicente have together. And know that your GRACE family has both of you in our thoughts.
Sun, 09/29/2013 - 02:38
You remain in my thoughts.
Sun, 09/29/2013 - 06:39
I'm so sorry to learn that your husband has progressed and has LMD. As I'm sure you are far too aware, this is bad news. That said, radiation can be helpful. Further, pulse dose tarceva does penetrate into that space and can sometimes be very effective. For a case of it working very well, see http://cancergrace.org/lung/tag/leptomeningeal-carcinomatosis/
Sun, 09/29/2013 - 13:01
Holly, Thinking of you and your family and hoping the time you spend together is wonderful.
Sun, 09/29/2013 - 18:44
Thank you all so much for your caring, supportive replies, thoughts and prayers.
And thank you Dr. Weiss for the article. It was that very article that prompted me to ask the oncologist to try pulsed Tarceva. He is a young guy, and had never tried it before, but did his homework and agreed. Vicente will start 1500mg /week after radiation. Thank God we have some extra pills.
Blessings and gratitude,
Mon, 09/30/2013 - 07:42
Good luck Vicente and Holly.
Please make sure to take care of yourself too, Holly. It's an easy thing to overlook.
Enjoy your moments together.
Mon, 09/30/2013 - 09:02
Taking care of myself has taken a back seat for now, but that's OK. I have Prozac. :)
Mon, 09/30/2013 - 18:22
Just a quick update. Saw both the rad/onc and the med/onc today. The rad/onc doesn't want to do any more radiation on Vicente's spine right now, so Vicente will start pulsed Tarceva tonight at 1500 mg.
Blessings and thanks,
Mon, 09/30/2013 - 20:46
Good luck. Please keep us posted.
Mon, 09/30/2013 - 21:10
I've got it crossed for the best of luck.
Mon, 09/30/2013 - 21:21
I hope the pulse dosing of Tarceva works well for Vincente. I want to point out a possible problem you may encounter when pulse dosing 1500 mg per week. This will require 40 pills each month to work. My insurance company, BCBS, would only approve 30 pills per month and required me to purchase the additional 10 pills out-of-pocket. They were costing $200 per pill. Please check with your insurance carrier now to determine their policy.
I turned to the drug manufacturer, Genentech, for help and was put in touch with their Access to Care Foundation / 800-530-3083. If you qualify they will supply the additional medication at no cost.
I will be happy to discuss this with you personally if it will help. Just let me know and I will provide a way for you to reach me.
Mon, 09/30/2013 - 22:23
Very, very helpful info, thanks for sharing that. Holly and Vicente, stay in the light.
Tue, 10/01/2013 - 01:39
Holly, I will keep you and Vicente close in my heart and thoughts as you begin pulsed Tarceva. I hope he finds it tolerable and that his spine pain is controlled. I also hope you have the support you need in the form of people around you who can help out when you need it. Sometimes I think this journey is harder for the caregiver than for the patient. Give yourself time to just walk away and let your mind clear out once in a while, and do something nice for Holly. You deserve it. Best of luck.
Tue, 10/01/2013 - 15:59
I just came across this thread and am so sad and sorry to read that Vicente has been diagnosed with LMC. My thoughts and well wishes remain with both of you, and I hope that maximum comfort is achieved each and every day.
With a heavy heart,
Tue, 10/01/2013 - 18:01
Thanks for the heads up on the Tarceva. I am off work next week and will certainly call the company. Vicente's insurance considers PET scans experimental, so I'm sure extra Tarceva is out of the question. We have about twenty-five extra pills right now with more being delivered on Thursday.
And thank you, Debra, Jim, Sherry, Janine and Laya for your kind words. It really means so much to me.
Dr. West, Vicente took the ten pills at 9:00 pm last night, then he vomited at 4:00 am. That gave the pills time to get in his system, right?
Tue, 10/01/2013 - 21:18
In general, we recommend that someone retake pills if it was less than an hour since they took them, but we consider them likely to have been absorbed if it has been more than an hour. However, I strongly suggest that when you have questions about immediate management issues, his doctors need to be the ones to seek information from.
Wed, 10/02/2013 - 05:11
Of course, and thank you Dr. West.
Wed, 10/02/2013 - 09:20
Just a hello to let you know I'm thinking of you both and sending the most positive energy your way.
Love and Peace
Wed, 10/02/2013 - 09:27
Your presence is a great comfort across the inter web. Seeing your replies is like a warm blanket on a cold morning. THANK YOU for all you do and for being there for us.
Holly, What Janine said. Prayer ribbons for you and your beloved Vicente and Moms.
Love and hugs,
Wed, 10/02/2013 - 12:05
Thank you Jazz, an out of work teacher needs to hear that from time to time. :)
You're all very much in my heart.
Wed, 10/02/2013 - 16:39
When taking pulsed Tarceva, does it have to be taken all at once? I ask because when I was on 50 mg and had to take 2 pills, I would get nauseated from them. I can't imagine taking - and keeping - 10 pills down.
Wed, 10/02/2013 - 17:13
It's not like this is well studied, but that's the intent. The idea is that you get a peak plasma concentration that is much higher than you get from one pill per day. It's probably still going to reach a high level if you do 4-10 within a few hours, not in a 5 minute period, but the idea is to take a lot within the same time frame so that the dose of all of the pills overlaps to produce a much higher peak level that penetrates into the central nervous system far better.
Wed, 10/02/2013 - 17:57
Dr. West, thanks for the clarification.
Jazz, you are such a sweety!
Sherry, he throws up almost every morning as it is; the 4:00 am one was a little earlier than usual.
And Janine, you were a teacher? I am a 5th grade language arts teacher at a middle school.
Wed, 10/02/2013 - 20:31
Holly, why doesn't your being a teacher surprise me? I was an assistant teacher in a 4th/5th grade class in L.A. The school is a small private k-6, social studies based, experiential school; about as far away from the the type of school I attended as one can get. I did my student teaching there and they couldn't get rid of me. ;) Here in Birmingham I taught and coached at a Life Skills transition school for young adults with LD. I miss it.
Sun, 10/20/2013 - 18:51
I just want to give an update on Vicente. He is getting worse on a daily basis. Horrible headaches will hit him, and he is agony until they're gone. They leave as suddenly as they start.
He has had three weeks of pulsing Tarceva at 1500mg.
Today, a headache hit him while he was walking, and he just laid on the floor staring into space. He wouldn't respond to me. He was better by the time the paramedics got here, and they moved him back onto the couch. Needless to say, I am taking an indefinite leave from work.
Is this debilitating pain part of lepto? Most of what I've read here says there are headaches, but that the disease isn't necessarily painful. We did see a palliative Dr at the cancer center last week; she adjusted his meds, but this pain is still unbearable. We are in contact with the cancer center. I just wanted to see if anyone here has seen this.
Thanks to all,
Sun, 10/20/2013 - 21:06
Holly, I'm so sorry that Vicente is suffering from so much pain and that you have to witness it. I know it is not the same, but when I had my brain met, the pain was unbearable. I honestly felt like my head was going to literally explode. The air from the ceiling fan hurt. In my case, I was given oxycodone and it did help. I started out with pain from the tumor itself, then had an infection, which caused severe pain. So I can somewhat understand what he may be feeling.
What is being done for the pain? Is Vicente in hospice? I know they are very good at pain management, so if he is, please don't hesitate to call them for help. I truly hope you can find something that will help him.
You will both be in my thoughts and prayers.
Sun, 10/20/2013 - 22:11
I'm so sorry. You ask if the headaches can be from LMC, and it's definitely very believable that this would be the cause. Though headaches aren't a leading symptom from LMC, they are absolutely seen in this setting. Obviously, you're trying to treat the underlying cause, and beyond that, Sherry's suggestion of strong pain medication such as an opiate (morphine, oxycodone, dilaudid, etc.) is a very appropriate one.
I hope he's feeling better soon.
Mon, 10/21/2013 - 06:55
Thank you so much, Sherry and Dr. West.
Vicente has tried morphine and dilaudid. Both caused weird side effects. With the morphine, he was alseep all the time, and he hallucinated with dilaudid. He is on hydrocodin and indocin during the day and takes an extended release morphine at night. And no, since he is still pulsing the Tarceva, he isn't on hospice. Believe me, I am always thinking of it. I don't know how long one pulses the Tarceva before giving up. The Dr said he would try chemo next. I don't think so; Vicente feels crappy enough, and I haven't seen anything good about chemo in the a lung cancer setting with lepto.
Again, thanks for your input and prayers. I have learned so much here. The doctors ask if I am in the medical field. I tell them nope, just love my husband.
Mon, 10/21/2013 - 09:58
Stay strong, we love you...
Mon, 10/21/2013 - 21:06
Sorry to hear that Vincent is experiencing such debilitating headaches. Beth had headaches but not nearly that severe. She used a 25mg delaudid patch and used oxycodone for breakthru pain. I hope you get it under control.
I'm thinking about both of you. and praying for a miracle. Bob
Tue, 10/22/2013 - 13:00
I'm so sorry to read that Vicente is dealing with so much pain. I really wish his doctors could think of a way to control it a bit better. I remember my mom's doctor telling us that with morphine, you have to find the exact right dosage via trial and error where the person isn't completely knocked out, but the pain is managed. have they tried to fiddle around with the dosage for him?
I'm so sorry about all this, Holly. . .and just plain ole' heartbroken. . .