Husband w/Oligo

anjiep · Regular Joined: 15 Jun 2008 Posts: 16

Chelsea-
I'm sorry to hear about the decline in your husbands condition. I don't have answers to any of the questions, as I am rather new to all of this. I did want to tell you that your family is in my prayers. You have been helpful to me when have had questions, so I wish I could help you!
Take care,
Anjie
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Mama 2 2 · Posted: Mon Sep 22, 2008 2:03 pm Post subject: Re: Husband w/Oligo

Hello Angie and Anjie Very Happy

Thanks so much for your well wishes and prayers - it is always helpful.

That's a good question about debulking if there is some reduction in the tumour from the chemo. I'll have to look into that.

The good news is the flashing seems to have gone away, so they are starting to wean him off the steroid - though he has woken up with a headache the past few mornings which is not common at all for him. Usually once he is up and has had some breakfast it goes away, but it's still somewhat concerning.

We are going to visit a naturopath who specializes in oncology on Thursday - I've heard a few people credit this man for saving their lives (not brain tumour patients, but it's still encouraging), so here's hoping he can provide some sort of help - even if it's just to help ease side effects.

I hope you are all well
~C~
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jctajf · New User Joined: 19 Aug 2008 Posts: 8

Hi Chelsea -

You kindly replied to a concern I posted recently and through that, ended up reading about your family's experience. It sounds like you have a lovely family, one that is handling this as well as you can. I am sorry to hear about all of it. I hope your husband is feeling well at the moment.

Best wishes to you and your family -

Audrey

Mama 2 2 · Posted: Fri Sep 26, 2008 11:21 am Post subject: Re: Husband w/Oligo

Hello Audrey,

Thank you for your kind words and well wishes - I think you have probably already found and will continue to find that this is a great place for support and to vent - it's incredibly unfortunate we all have to be here mind you.

I also wanted to post to find out if anyone on the forum had any experience or information on Careseng. . . . it's treatment derived from ginseng. We went to see a naturopath who specializes in oncology yesterday, and he has treated thousands of cancer patients with quite a bit of success.

I know they have it in pill form, but he administers the Carseng through IV. It's supposed to work alongside chemotherapy to help make the body more effective in processing the chemo and to make the cells more sensitive to the chemo and promote aptosis. He said that he can do a blood test to check the 'tumour marker' in his blood to see if it's working or not . . . . I wasn't sure if this sounded possible as we have always relied on MRI's.

It's an expensive treatment, we're going to give it a shot but I would love to see if anyone else has had any success with it.

Cheers!
~C~
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Mama 2 2 · Posted: Fri Nov 07, 2008 3:48 am Post subject: Re: Husband w/Oligo

Boy - I didn't realize how much time had passed since I last posted on my own story . . . . but no better time than now!

My hubby had an MRI yesterday, and while the tumour is still there, it is significantly reduced from what it was 2 months ago, so there is certainly cause to celebrate! Very Happy

We ended up paying for a private scan as we didn't want to wait for the one ordered by the oncologist. When it was finished they gave us a CD of the images. We have to wait a few days for the written report because they want to compare it to his past scans, but I had brought my laptop so we could view the images on the CD right away. I couldn't believe it when the scan came up and so much of that 'white stuff' was missing!

Obviously I'm not a radiologist, but I felt pretty confident that what we were looking was good, then we headed off to meet with the naturopath to get his opinion. He was so excited he started yelling! He said you don't need to be a radiologist to read that, and any idiot could tell that it's good news! (he's quite a character=). His conservative estimation was that it shrunk at least 40%, and I would guess even higher. Basically, it now looks almost like it did back in June.

The naturopath would like to see Elias come 3 times a week for treatment now, and hopes that in doing so the rest of what you can see would be gone by the next scan.

While it is true that we don't know if the chemo could have done this on it's own, we are not worried so much about that. His tumour doesn't have the 1p/19q deletion, and even the nurse at the cancer agency had told us that one of the reasons they didn't want to scan too early was the new chemo his is on is a slower working drug and we likely wouldn't see much progress yet because he hadn't been on it long enough. Well, we certainly saw progress today so I like to think that what we are doing is working. Besides that, it has made him healthier overall which isn't a bad thing. We'll take whatever works and breathe a bit easier tonight!

We are not out of the woods, but we have hit a clearing and the sky sure looks blue! Cool

~C~
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Tammy · Posted: Fri Nov 07, 2008 8:03 am Post subject: Re: Husband w/Oligo

!!!!!!!!!CONGRATULATIONS CHELSEA AND ELIAS!!!!!!!!!!
I am so happy for the both of you, reading your post I could not help my feellings of your excitment ,gave me tears, Chel I hope that you and Elias only continue to have the great responce from the chemo....I can't believe the happy feeling I have for you both...Congrats once again xx
Take Care
Tam~

brainman · Posted: Fri Nov 07, 2008 9:16 pm Post subject: Re: Husband w/Oligo

That is wonderful news, Chelsea! This is awesome news. You don't need to be a radiologist to tell if there was been a change Very Happy

.
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Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
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ksplat · Posted: Mon Nov 10, 2008 6:12 am Post subject: Re: Husband w/Oligo

Dear Chelsea
I was thrilled to hear the GOOD news after Elias' MRI last week. We will keep up the prayers & positive thoughts from our end.
Thinking of you.
Cheers, Angie.
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Tammy · Posted: Fri Jan 09, 2009 8:06 am Post subject: Re: Husband w/Oligo

Hey Chels
How you doing hun? and Elias how is making out? I hope you had nice holidays, mine were just right.
How is everyone? has there been anything new in Elias condition?
What about yourself? how you making out? I do not know what it is like to be on the other side but I can imagine it is just as hard.
Any how I just wanted to say that I was thinking of you, and decided to drop a note Smile

Take care my friend....

With warm affection
Tammy~

*May the Lord continually refresh your heart and give you the strength equal to the demands of each day*

Mama 2 2 · Posted: Fri Jan 16, 2009 4:21 pm Post subject: Re: Husband w/Oligo

Hey Tam,

Thanks so much for checking in. I 'almost' posted last week on the eve of Elias MRI when I realized how long it had been since I had updated everyone here - I've been pretty good at keeping the caringbridge site updated, and I've been keeping up with everyone else's stories here, but not my own. I ended up going to bed instead of posting and figured I would just update with the results.

It's been a bit of a rough week - the MRI last Friday showed areas of growth on his tumour Sad

- not a lot, but enough to worry us that the lomustine has now finished it's course. We went to the n-onc on Tues hoping that he would agree and change his chemo (we paid for the scan privately so he hadn't seen it yet), but he said that 'protocol' is to wait until there is at least 25% growth showing, and while he told us he was 'worried', he didn't feel it was enough growth. He also said because the scan was done on a different machine and his head was at a slight angle it was too tough to tell exactly how much was growth and how much was a diffence from those factors.

I asked him what he 'thinks' we should do, protocol aside, but he said that it everyone ran around using their gut instinct all the time there would be no standard of care, or something like that. That doesn't help much if the 'standard of care' isn't right for Elias! He wanted to go ahead with one more cycle of lomustine and scan as scheduled at 6 weeks to be sure the lomustine isn't working any more. Of course I asked if we could get a scan on their machine earlier instead, but that was a no go and when I expressed concern that another 6 weeks may be too long he said he didn't fell it was long at all - I told him that's because he doesn't have something growing in his head! To us it's a lifetime. I know 6 weeks really isn't that long, it's just hard when you see growth to have to sit and do nothing different and wait. We were trying to be pro-active by getting the scan done ourselves, and now it feels like we just threw $1200 down the drain and caused more stress.

The n-onc said that he has seen cases like Elias' where the next scan surprises them and is better though, but he has also seen the opposite. He also feels that where it is showing growth is not an area that will cause much in the way of deficits if it does continue to grow, however the area that grew the most is directly crossing the mid-line . . . . while there is no visible shift, it's still of concern to me! He just continued to paint a not-so-pretty picture about his future, though refusing to give any idea of possible prognosis. Like Brainman, we don't plan to live by the number given, we just want some reasonable expectation, and hey - if he outlives it we aren't going to be mad! I guess they're worried about the opposite though. The closest he came to anything was saying that he's seen people in Elias' condition go into what he called a 'sustained remission'. When I asked him how he defined that, he said 1yr with no growth. Elias' is showing growth every 3 months or so at this point so as crummy as only one year sounds, I guess it's better than what we are dealing with right now.

Anyhow, it was a big downer of a day, but we are starting to recover and Elias is going to get back to eating better (the holidays were a bit lax with his diet and he probably ate too much sugar Embarassed

), we have invested in an infrared sauna and we will try to get back to more visits to the naturopath (we had dropped a few to help pay for the MRI and the sauna). The snow is finally melting around here - it's the most I've seen on the west coast in my life! And we had a wonderful Christmas and New Years season with the girls and our families.

All my complaints aside about Elias tumour, we are incredibly grateful for the support we receive from our community - including my BT friends here Smile

.

The deeper we are etched with sorrow, the more joy we can hold

Peace and Joy to you all!
~C~
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anjiep · Regular Joined: 15 Jun 2008 Posts: 16

Hi Chelsey,
I'm sorry to hear of the growth! I have been thinking about getting the natural treatment info from you, for the day that I pray is many years away....I wonder if trying it, less the actual expensive "formula", would be beneficial to me at this point. Maybe it would "discourage"growth? Is it mostly just a organic low sugar diet with exercise? Anyway, sorry...less about me!!!!
That has to be incredible frustrating!!!! I work in the medical field, and understand about "standards of care" and what not, but it's SO different when looking in from the other side, I understood that before my diagnosis, but even more so now! And I am so scared to trust someone to make decisions about MY life, I imagine you feel the same way about Elias! They are guessing, because they don't know...nobody does. And that really sucks! I'm sorry I don't have a more upbeat, inspirational post. Kind of in a "funk" today. But really, my prayers are with you and your family!!! What's the date of the MRI? I'll try to check in on you Smile

Anjie
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Tammy · Posted: Thu Jan 22, 2009 11:30 pm Post subject: Re: Husband w/Oligo

Hey Chels...
I am sorry to hear about Elias growth. I pray that he will stay strong and be able to fight this and be one of the medical miracles we always hear of. It seems most doctors don't really feel that the time waiting is much, but I feel if they were in *our* shoes it would be whole new story.
I know its tough Chels, it has to be watching your loved one going through this and for all it's worth I wish for you nothing but courage,strength and comfort. I feel you are one darn caring person for him and he is lucky to have you by his side. Heck we are all lucky here to have you take time out of your busy days just to write a few caring notes, and letting us know you are reading our stories giving some support, it may feel like its not to much, but it means an awful lot to some of us if not all....I know it sure does for me... =)
*hugz to you and Elias* Keep us updated and if possible let me know how the next mri goes, or any other changes, even if you just want to vent =) I always try to check in a few times a week.....
Thinking of you both.....

~*Tam*~

Never take someone for granted
Hold every person close to your heart
because you might wake up one day
and realize that you've lost a diamond
while you were too busy collecting stones.

Mama 2 2 · Posted: Sat Jan 24, 2009 1:18 am Post subject: Re: Husband w/Oligo

Greetings once again,

Thanks for your posts Anjie and Tam, it's always great to hear from you both. Tam, after reading your post about having to wait a year for your next mri, I feel bad about complaining about waiting another 6 weeks Embarassed

. The good news is, your med team must believe that there isn't much risk if they are waiting that long. Elias' next scan date is Feb 23rd, but we don't get to meet with the oncologist until the next day, and it won't be ours since he is away.

Elias is watching the sugar in his diet, as well as taking a number of different supplements, and the main expense is in the 'careseng' treatment. You can get it in pill form, which he takes, but he also gets it by iv. We've seen countless patients with varying types of cancer respond really well with the treatment but it's just so expensive and it takes most of the day for us to go because we need to take a ferry to get there. He's also going to try to start eating a diet with more alkaline foods (less acid) and we recently got an infrared sauna which he has been in almost every day.

I've researched a ton of natural treatments and we're always willing to try something new. We just hope we can do what we can to improve his odds. There's no question that it's tough no matter what side of this you are on. I admire the two of you, and the many others here who are on your side of the table as I can't imagine it's easy. As much as we talk about it, I know I'll never fully understand what Elias is going through either. I'm sure glad we all have eachother to make the days easier though!

Take care everyone, and have a great weekend!
~C~
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Mama 2 2 · Posted: Thu Feb 26, 2009 5:12 am Post subject: Re: Husband w/Oligo

Hello my friends,

Well, the six weeks has passed and Elias had an MRI on Monday - unfortunately it was not good news. There is a pretty significant amount of new growth and most of it on the left side. Now the area on the left and right look almost symetrical, with a band crossing the midline connecting the two large areas.

The 'good' news is, it appears to be a low density right now and is not pressing on much or squishing any ventricles, and no apparent mid line shift which is surprising - though I'm waiting to get the report in still. The oncologist was shocked to hear that aside from some significant fatigue and the odd feeling of slight temporary pressure (?) in his head (he doesn't know how to explain it other than it's a bit like when you get up too fast or shake your head around too much and feel a bit 'off' for a minute or so) he's otherwise still doing really well. We can't help but feel that perhaps some of the natural treatments we are doing are having some sort of impact.

So, he'll be going back on temozolomide (temodar) but this time on the low dose taken daily, 110mg's/day for 28 days. He'll do two cycles of this then scan again in 8 weeks. The naturopath we are seeing has also upped the strength of the treatment he is taking there and added a few components which hopefully will help. They noticed a bit of pressure behind his left eye from swelling so he may need to take the dexamethazone again, but he's going to hold off for now and only take it if the pressure gets worse.

Well, I don't have much battery power left in my computer and I really should be asleep right now anyhow, so I'll keep it short (for me anyway, I'm usually so long winded . . . Embarassed

), but I hope all of you are doing well. I don't know what this means for prognosis, but I know it's not good. They don't talk about that with us at all, and I can understand their reservations but it's not like I'm going to hold them to any esitmate they give us and be mad if they're wrong, we just want a ballpark - and as Jim always says, its really only so we can get affairs in order. I would love to renew our vows next year for our 10 yr anniversary and I don't know if this develpment greatly affects our chances of that or not.

I don't like trying to look to far down the road as that's when it gets upsetting, so we really stay happy living in the moment, but there is a certain amount we need to consider and prepare for - tumour or not - and I'm a horrible procrastinator.

I haven't had much time to post on other's threads, but my thoughts are with you all, especially Charlene, and I'll try to keep up more in the coming days.

Peace to you all
~C~
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Roman957 · Regular Joined: 22 Feb 2009 Posts: 27

Hi,

I have been reading your posts on this site and your caringbridge website for about a month. (I made an entry in your guestbook not too long ago)I think I can honestly say I totally relate to what you have been going through. My wife Lilliana was diagnosed with anaplastic astrocytoma grade III last October, so we are not as far along this journey as you and Elias. Like you we have two beautiful children, although ours are a bit older, 17 and 12. Telling them that their mom had brain cancer was the most difficult thing we have ever done. But being older, maybe it was a bit easier because they could understand it and at least deal with it. From what you have written, I know your life has been an absolute roller coaster of emotions- such highs and lows. What comes through though is your strength and love as a family. You have handled this adversity with such dignity and grace, that is clear. I visit your site regularly for updates, and please know that you and your family are in our thoughts and prayers.

PS...we have a caringbridge site as well. If you are interested, you can find it by typing in lilliana. Take care.
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