Outrider1

December 1, 2009

Lyn,

On the travel re-imbursement, I misspoke. He will be eligible if he meets financial guidelines. Depending on his financial position he may be eligible for travel pay. When you take him into the VA he will most probably have to do what is called a "Means" test which is just the paperwork showing his finances etc. When this paperwork is filled out, since he will be living with you, you may have to declare your financial situation as well, but I do not think so. I will have to ask and get back with you on it. I just know that my youngest daughter still receives a a death benefit from her father and they did not list her benefit on my means test as the benefit is for her support.

There are other guidelines about the travel pay that you can get when visiting the travel office in the VA hospital.

You also need to look into talking the The Veterans representative there in the hospital as well, they will help with letting you know what he is eligible for and filling out all the paperwork.

As far as feeling like you are playing "catch-up", I would suggest taking a notebook with you to Dr.s appts. to write everything down so that you can have a reference to go back over after the appt. I would also write down any questions that you may have before the appt. so that you don't forget. It might help you to write down questions as you read the forums here and at Grace. I know I am always forgetting to tell one or the other of My Dr.s something or ask a question and end up having to call them back.

There is plenty of information on the internet, but do not read and rely on any statistics involving cancer of any kind and prognosis (length of time) as many of them are at least 20-30 years out of date. Much of the the cancer therapies being used today have only come into being in the last 5 -7 years and have not been out long enough to gather good quality statistical evidence.

Also your dad is not a statistic, so they don't apply.

For the personal about me, I was Dx'd in May (May i9s not a good month for us, My MIL died in may, My husband died in may suddenly and unexpectedly a week after I had a car accident, so may is the month I would like to petition to remove from the calendar, lol)of 2008 with chemo started a week after Dx. I did 6 rounds (1 round is infusion week one, wait three weeks, next round started when next infusion came at the end of three weeks)carboplatin and etoposide infusion and then two days of etoposide pills after the infusion. My infusions lasted 3 hours as the drugs had to go in separately and I also got anti-nausea drugs infused before the chemo. My last chemo cocktail was 7 Oct 2008, so currently I am 14 months out from chemo and almost 20 months out from dx. My Dr. are all very pleased with my response to treatment and we are all keeping our fingers crossed that the chemo, just like the Energizer bunny keeps going and going (ie working, lol) and counting our blessings

Just remember, where there is breath there is hope.

Feel free to pm me about anything. And keep us updated on you and your dad's progress.

Dawn

MEMBER UPDATES · November 30, 2009

Just thought to stop by and turn in my hall pass.

I had the best time mainly because I little realized how much I missed getting out and meeting people. So as of this Thanksgiving, which has done much to show me many things, Things they are a changin'. For the better I think.

I hope you all had a wonderful holiday.

Dawn

November 30, 2009

Lyn,

First off, cancer is not the "death sentence" that it used to be. I have a Dx of ext-sclc, the most aggressive form of Lung cancer. When I was diagnosed I was 49 years old, could not stand, sit, walk ,or lay down except on my left side. I could not take care of my personal hygiene or dress myself. I had met.s to left hip and femur, all the lymph nodes in the left groin, left 7th rib and cervical nodes, right salivary glands and nodes in the jaw, right adrenal gland, tail bone and L5 & L7 vertebra, left upper arm and axillary lymph nodes and a large mass in my right middle and lower lobes of the lung. I was in bad shape to say the least.

One hour after first chemo I could stand and walk, not well mind you but I could do it. It continued to get better from there to the point that I no longer need anything for pain except on a very occasional basis and then it is ibuprophen. I have some other issues going on with my head (ie. possible Multiple Sclerosis, still trying to work that one out) that keeps me using my walker when having to walk a lot (which I do for Dr. Appts at the VA here in Dallas). My quality of life is excellent at this point.

I will not ever intimate that your father will have the great response that I have had but I will tell you that with proper nutrition and care that it can happen. The many lovely individuals on this site will give you all kinds of advice on how to bring about good quality will undergoing treatment, and afterwards. They have been through it personally or are caregivers to those that are going through it. There is wealth of information here. And They don't mind answering as many questions as you may have.

I personally can help with any questions that you may have about the VA system especially on how to get things done and how things should be working and if I don't know, I can find out.

Another place that you can go to get some technical questions answered is

www.cancergrace.org.

That site is run by a bunch of very caring Dr.s who do their best to answer the technical stuff for us. They can't answer personal treatment related questions but they do a heck of a job answering the hypothetical and the technical. Dr. West (the Grand Pooh-Bah over there, lol) is a guest speaker here at lungevity and sometimes comes in for guest chats.

My best advice to you is concentrate on living, and the quality of the living. Be the strongest advocate for your father that you can be as you may have to fight to get what he needs.

As far as the issues of making it work inside the house, contact your states agency on elderly and disabled. They may have some programs to help modify your home to accommodate his needs at no cost to you. He is also eligible for travel re-imbursement pay from the VA and if he ever set foot on the ground in Vietnam, he is eligible for compensation for agent orange exposure. This will help in terms of independence for him or to alleviate an financial hardships you /he may be encountering.

And lastly, Make sure that you take some time for you and your child. That is just as important as anything else, sometimes more so.

Live, Love, make memories and come here and ask all you need to or to vent, if need be. Just know that you are not alone and we will do what we can to help you with this new journey that you are now on.

Oh! and remember to breath! Sometimes taking those deep breaths are the only thing that keeps me sane.

Dawn

November 28, 2009

Here is a link for the information you seek...(neat how that kind of rhymned, lol)

http://brainsurgery.upmc.com/conditions ... 4720229522

http://www.conquerchiari.org/index.htm

I hope this information is helpful to you.

Dawn

November 24, 2009

Carrot cake with pecans and cream cheese icing

Peanut butter cookies

Chocolate-peanut butter fudge,

Pumpkin bread with spice glaze

And since I know nothing about baking bread, small tubs Southern Bread Pudding with rum sauce.

And last but not least Magic Cookie Bars. (I know that is one more than asked, but these are real easy and taste like Heaven)

I put on 5 lb.s just typing that list, lol

Dawn

November 22, 2009

Beautifal day in NTX today. Currently 46 degrees looking to head up to about 67 with sun and a slight breeze.

We have been cleaning this week in preparation of Thanksgiving. I have made some progress in the area of mobility in that I am trying to do more. For a while I could not do much due to the pain of various mets and then due to the damage left behind. Next came the the problems associated with balance which is possibly associated with MS. I am learning to compensate for those issues although every once in a while I still forget, and end up having to hunt a wall to brace myself against. It's just that my mind still feels 20 and and my body just doesn't follow suit, lol.

Looking forward to finishing the cleaning and relaxing, a little on this beautiful Sunday.

Judy, as always my thoughts and prayers are with you and yours.

Lily, you have been on my mind much, as much of what you have written is very profound and touching and reminds me soooo much of My Mikey. Although he did not die of cancer, he left suddenly without warning of any kind.

Just know that I am right there with you, girlfriend.

As for the rest of you out there in cyberspace Lungevity land. I think you of daily and remember you in my prayers and hope that, wherever you are that you will have a blessed and wonderful day.

My heart sings today and for that I am blessed

Dawn

November 19, 2009

Okay, I'm with you now.

I agree with you about the cells in the spinal fluid infiltrating the brain.

My hypothesis is that since there are less blood pathways (veins, arteries etc.) around the spinal cord than there is in the brain (which is a target rich environment, so to speak) is the reason that you see less cancer cells in and around the fluid and spine than the brain. Since cancer cells target the brain for that reason, it is the only reason I can see for targeting the brain only to minimize any damage that may occur from the radiation to the spine.(I hope that makes sense) (I am no Dr. but have gathered this from what I have gotten...I think I said that before.lol)

As far as the Grace Dr.s I think they are referring to the possible damage from the radiation in relationship to the actual good it might do in reference to the volume given. Most of their posts on the the subject point out that it is a tool to use when necessary, but feel their best options are for the chemo regimes you have noted.

I will note in the treatment of my SCLC I have had carboplatin. Of the other drugs you have listed I have been told they do not work nearly as well on SCLC as they do On NSCLC and are not normally used for SCLC. But, I will ad them to my list for if and when my SCLC shows back up.

Thank you for the discussion, I found it enlightening.

Dawn

MEMBER UPDATES · November 18, 2009

I will be out of town from Wed to possible Sat seeing my oldest son and meeting his in laws for Thanksgiving. Will try to pop in when I can but I will not be here on Wed to moderate the Lunch chat.

Happy Thanksgiving to you all

Dawn

November 18, 2009

It's that time of the week again. Lunch chat at 11:30. I will be out of town next Wed. so we will take a break next week.

Come see me this morning and lets talk! About anything under the sun!

Dawn

November 18, 2009

So what's the rub here?

From what you stated about the Grace Dr.s responses to your question; 1. it was in relation to SCLC not to NSCLC as your original post was and 2. That they agreed that in regards to NSCLC that PCI/WBR showed no added benefit just as the study suggested. Those two posts had responses about questions of spinal fluid and cord which had nothing to do with the original study information that you posted. The original post was that the study was conducted to determine the effectiveness of PCI/WBR as a preventative for NSCLC to the brain. I found both of the responses not "cute" but informative and well thought out but I did not take them as "gospel" on the subject.

My PCI was 8 days both times and the actual radiation to the brain lasted maybe 30 seconds not the ten minutes as suggested in the study information. The whole time from on the table being adjusted to strapped down to unstrapped, and off the table was 10 minutes or less, every time. Ten minutes of radiation seems excessive to me and woulds certainly cause cognitive damage and memory loss problems.

As to the spinal cord and fluid, it stands to reason that cancers cells travel in a fluid system, ei. lymphatic, circulatory, or cerebreo-spinal fluid just as all other things that affect are whole body do (drugs, infection, virus, etc.) So treating the fluid makes sense. The problem is that the closer you get to the brain and in the brain itself, the pathways for the fluid to travel get smaller and smaller so that the larger molecules of whatever drug they are using can not get in. The larger capillaries in the CNS surround the spine, so it stands to reason that you would treat the spine with treatment that would cause the LEAST amount of possible damage (ie. chemo v. radiation). Since most chemo will not cross the blood brain barrier and may not get rid of all of the cancer cells in the CNS, PCI/WBR is used to try to reach those cells. Although SCLC is extremely aggressive, it is an easy "kill" in that Chemo and radiation both work on it rather well which is not the case with NSCLC. There are several drugs out (navalbine comes to mind right off the top of my head used for NSCLC)that are thought to be able to cross the blood brain barrier and are being studied for use for SCLC. The ones you mentioned in the second part of the post are targeted to NSCLC and do not work as well or at all for SCLC. Since SCLC is less common the NSCLC more work is done in that area of research in order to reach the most people with any possible new breakthroughs.

The first part of the Hyppocratic Oath is "First do no harm" I see this in the post from the Grace site. Radiation is extremely damaging and the body can only take so much radiation in a lifetime, so why use that if something less damaging will do? Although most chemo currently destroys all cells, there is research on-going right now for new therapies and chemo drugs that target specific cancer cells and not good healthy cells. There are also new targeted radiation treatments being used for treatments to the brain as well as all other areas to minimize exposure and damage.

And please explain to me how one cancer drug can run a several different types surgeons away from a Hospital/Medical Center? It certainly isn't because the surgeons are out of business as they work on all things related to their areas of expertise not just removal or eradication of cancer. I realize this was in response to a similar experience shared by ginny but it sound like from the beginning of the response to me and then included to ginny that you were more angry at the Grace Dr.s posts and your experience with the Medical treatment center than in the fact that all things posted after the original study information you posted agreed with what the study said.

I am not trying to be confrontational at all, however I do not understand the rationale behind your reply post to me when I agreed with what you and the original two posts were saying. Although, I am no Dr. (as I have stated several times before) so my agreement is really immaterial, I did appreciate that you brought the information forward.

Maybe I am missing something fundamental here. If so please let me know.

Dawn

November 17, 2009

Thank all of you soo much! Although I don't post a lot, I would never would have come this far with such a good attitude and positive outlook without you!

Dawn

November 17, 2009

This is interesting reading. They did a study to back up the what the doctors are already practicing confirming that they are doing the right things. Most Onc.s do not recommend PCI for nonSCLC patients and WBR is only used after mets are found in the brain.

As I have ext-sclc and have had PCI (twice Mar09 and then again Jul09) and am considered in the minority of that type of LC at the VA where I go, I have yet to see any of the Non-Sclc patiients sent down to RadOnc for PCI. They usually only have radiation to their brain(WBR) when mets are found and it is targeted to the the tumor itself and not to entire brain.

When I asked some of them about it, they tell me they are sent for radiation to shrink or destroy (hopefully) their tumors only and not as a preventative and the radiation is only to the location of the tumor directly. My Onc.s (I see several different ones) all have said the same thing. Dr. West over at Grace says the same thing as my Onc.s about the relationship of radiation in the preventing future mets with Non-sclc.

I also asked about the radiation to the spinal cord in relation to the fluid and was told that the larger molecules of the chemo are thought to be able to pass through via the capillaries surrounding the cord as they (the capillaries) are larger than the ones surrounding the brain and once the fluid reaches the brain the molecules are too large to pass through the smaller capillaries. Radiation to the spine is usually only used to treat for pain management or to remove actual tumors and not to treat the fluid for floating cells in the fluid for that reason. They think that the chemo can reach the the fluid surrounding the spinal cord.

I am no Dr. so this is only the stuff I have been told by the Dr.s and what I have been able to pick up through researching on the internet and at the library.

It is nice to know that someone (People doing the research) is back stopping what the Onc.s are practicing with the studies that they are doing the right things.

Thanks for the information and interesting read.

Dawn

MEMBER UPDATES · November 15, 2009

This sounds like positive news. Still sending prayers for a good and easy recovery from it all.

Dawn

November 15, 2009

Thank you all!

I first got on my knees and thanked my God. Then I celebrated! I still feel like jumping up and down and yelling but have not out of a need for decorum and the fact that my balance is so "wonky" still.. But I have given several fist pumps in the air and hollered "yeah!"

Thank you my friends

Dawn

November 15, 2009

AS of Friday, all of the masses in my chest, and the areas of mets (with the exception of my left hip and femur) are no longer there. When I said "you mean they are not longer showing any signs of activity?" ; she said "No, I mean they are gone. no signs on any scans showing those masses. The left hip and femur, show some activity and something there, but it could be just inflammation from the cells having died and possible healing. We are very surprised and pleased with how well you have done" (7 November was 14 months out from last chemo and 21 months since dx)

Now, I can concentrate on figuring out what is going on in my head. Contrary to what my brother in law says, its not just because it is empty, lol.

AS you can tell, I am walking on air!. But I will remain ever vigilant.

Dawn

November 15, 2009

As of my last scans and consult, I am considered (almost completely)NED. For ext-sclc, that is almost unheard of as there is always activity in the cancer cells and if not the masses (My Dr.s don't call them tumors cause they are so irregular in shape and sometimes spread like tentacles instead of being encapsulated ( that's what they tell me)) are still there just with not cellular activity showing growth.

AS of Friday, all of the masses in my chest, and the areas of mets (with the exception of my left hip and femur) are no longer there. When I said "you mean they are not longer showing any signs of activity?" ; she said "No, I mean they are gone. no signs on any scans showing those masses. The left hip and femur, show some activity and something there, but it could be just inflammation from the cells having died and possible healing. We are very surprised and pleased with how well you have done" (7 November was 14 months out from last chemo and 21 months since dx)

So now we are going to concentrate on what is going on in my head and try to nail down if it is MS or not. (which is my contention as well as the Rad.Onc and the Rad. as well.)

I still count all my blessings daily as I know this could turn around tomorrow and turn to you-know-what, but right now I am concentrating on remaining as close to NED as is possible for ext-sclc.

Dawn

November 15, 2009

Lily,

I am in tears as I type. Absolutely beautiful! And so true the message.

We are having trouble (again) with my youngest son (I won't go into details) and what you wrote is helping me deal with that. What you wrote also brought back to me the very sudden and very unexpected death of my husband 7 years ago. It brought back to me how much what you wrote expressed my very feelings of of our relationship and how things should be and were and also how I have been trying to deal with everyone (including strangers) since that time. My new motto is "be a softer kinder person" because of the very things you have written about.

So beautifully said.

Michelle, you can do it. Love, laugh, cry, hold and hug each other and you and your son can get through the day. Just as Lily said, love hurts especially when the one you love is no longer there, but as I have learned, when sharing the memories of that love with another the hurt is not as near as crushing when you share it with another who loved your special person as much as you. And you are building wonderful new memories even through the pain and the tears.

Dawn

MEMBER UPDATES · November 14, 2009

Lightin' a candle for you and your loved ones, darlin'. Send the prayers skyward on pine scented air to help lift them higher.

Will be thinkin' of you and yours

Dawn

November 11, 2009

Judy, when I say games, I am talking about the applications on FB/MS. I play several of the farm ones and several different fish tank/aquarium ones

Anyway, they keep me occupied when I have watched all of my TV shows on the net.

Dawn

November 11, 2009

Great weather in NTX today as Bud said. Fixing to open up the chat here in about an hour. While waiting on people to come in, I too will be playing my Facebook apps (games)

I am a relative newbie to FB as I don't really know how to look people up. We should have a separate forum just to talk about those games, lol. I do a lot of the fish and farm ones (don't really care for the Cafe ones as at one time I used to manage one)as well as mafia, vampire and castle/medievil ones. I like to pretend all the things I am beating up on in the mafia, vampire, and castle ones are all of the different kinds of cancers and visualize them being "iced" (as they say in the mafia games).

I learned after my husband died and I had to learn new coping skills to handle panic attacks, that visualization is a good skill to learn and does work. So far my ext.sclc is still at bay, but will find out more on Friday.

I am off to log on and play a few games and then open up chat. Ya'll come!

Dawn

November 10, 2009

Chat tomorrow at 11:30.

You guys come see me! It sure gets awful lonesome in there by myself :cry:

Dawn

November 7, 2009

Randy,

I knew Judy was busy with a well-deserved break. I just figured one of the other girls or even you yourself might have gotten up before me (which is not uncommon when I am on steroids as I don't sleep at night). and started it.

But I'm not fussing about it, I was just surprised cause I was so late. I am usually up with or before the sun.

I would also like to say I would love to see more of your comments as you are always hilariously funny and upbeat. Sometimes, your comments are the first to make me smile and chuckle and that always sets me up for a good day.

Dawn

November 7, 2009

I spent most of the evening on Thursday in the ER with a severe migraine feeling like I was having a stroke. Most of the ER docs at the VA are, to put it plainly, awful. However, this visit I was blessed with one of the best Dr.s I have ever had while in the Dallas VA's ER.

She was without a doubt, the most comprehensive person I have dealt with. She asked me for "All of my symptoms even the ones not related to my head and any that were related to my cancer. She made sure to do all the tests that she felt were needed with out over ordering. II had a CT of my head, a chest X-ray (checking my chest to make sure I wasn't having a case of VCS) and x-ray of my right hip and femur ( I was supposed to get one in Aug, but couldn't get up to the VA within 30 days to get it done). She took the normal blood tests (CBC, WBC, etc) and also an arterial draw(which hurts like breaking bones) to check blood gasses

The upshot. She thinks the headaches are from MS. All of the symptoms that I had were also symptoms of not just migraines but MS as well as stroke, so she said it was a good thing that I came in, just to rule having a stroke. She said she saw nothing in my right hip and femur and told me "for having ext-sclc your lungs are pristine and I see nothing in your chest that would indicate a cause for or a tumor that would cause VCS" I almost fell off of the bed when she said that. She said that since there is still a mystery about is it/is it not MS or cancer, she put in the record a suggestion of another MRI to compare to the one in June to see if there are any changes. Since I have a Pet Scan scheduled for Monday and a consult on Fri, she strongly worded the suggestion to do the MRI before the Fri consult so that the ONC.s and I could talk about it for possible follow up with Neuro.

The only thing I didn't like was that she put me back on steroids, which is why I did not go to bed until about 5 this morning and got up at noon.

All in all one of the better visits I have had to make to the ER. Got me in and out to. Was only there about 4 hours. I feel better about my up-coming scan as well.

Dawn

November 7, 2009

Imagine my surprise, to wake up at noon and find no Air yet. AAHH, well, I figured that with the Walk going on today and me stuck here in the house with the remanants of an ER room visit severe migraine, I could start the air today.

It's a balmy day today in NTX, just 63 degrees at this late hour of the morning (I know it is technically afternoon, but it still fills like morning to me), lots of sunshine, and a nice breeze. I plan on trying to wash a fur baby or two today (since it stopped raining we have been over-run with fleas) and sweep the floor and then veg out the rest of the day.

I hope you all have wonderful things planned to do today to get you out into the lovely weather.

Dawn

November 4, 2009

Steak and or chicken fajitas, rice and beans and hot tex-mex apple pie with cinnamon ice cream on a sizzling plate with hot, thick butter rum suace over the top.

Dawn

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