Ivan rocking it since 2003

[Bonni Hess]

Dear Ivan,
I am so sorry to hear about the diagnosis of your fractured ankle, but am greatly relieved and very grateful, as I know that you and your family must be also, that it is apparently not ASPS related. Having a fractured ankle may temporarily restrict some of your favorite physical activities which I know and understand that you are very passionate about, but at least the fracture will most likely eventually heal or can be surgically repaired unlike some ASPS tumors and mets. I know that you are frustrated and discouraged by this temporary setback, but Hopefully you can put it all in perspective given the more difficult/debilitating/unresolvable issues that other ASPS patients are facing and dealing with in their courageous battles with this insidious disease, and the fact that some patients have heartbreakingly lost limbs and/or mobility and too many have tragically lost their Lives to ASPS and will never be able to participate in any kind of physical sport or activity again.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[Ivan]

I know, Bonni, that it's silly to complain about an ankle fracture when people are permanently losing function from muscles being removed to get rid of the primary or are suffering terrible pain. What bothers me most is how useless and stupid this is. Like you said, it's not a serious thing at all, but it seemingly impacts my quality of life more than any of the 13 surgeries & ablations that I've had. What also sucks is that there is no guarantee or reasonably certain timeline of success here.

[Bonni Hess]

Hello again ivan,
After all that you have been through and courageously endured during the past nine years since your ASPS diagnosis, I know that now having a fractured ankle that limits doing those things that you most enjoy in Life, and which provide a healthy focus and diversion for you from your long ASPS battle, is like adding insult to injury. Because of Brittany's post-op spinal resection muscular skeletal damage and chronic severe pain as well as the debiitating side effects of her Cediranib treatment, she is heartbreakingly no longer able to actively ride her motorcycle, ski, and many of the other physical activities which she so much enjoyed doing previously, but she is very grateful to have her limbs and her Life, and continues to try to Live each day to the fullest pursuing and doing as many activities as she IS physically able to do as I know that you will do also with your strong determination and invincible spirit that has overcome so many obstacles thus far. Enjoy the beautiful Pacific Northwest summer weather, know that my special thoughts and very best wishes are with you for very good scan results from your upcoming brain MRI in August, and try to keep focussed on the positive things in your Life and the things that you CAN do.
With deepest caring, healing wishes, and continued Hope,
Bonni

[D.ap]

Ivan
Is your fracture single or compound?
Can you have someone who knows how to wrap it show you and then put an air cast on the foot?
An article I found
www.newscientist.com/.../dn2364-painkil...
Jun 5, 2002 - A new generation of painkillers could delay or even prevent the healing of fractures, ...
Also take a look see at:
5 Phases of Stress Fracture Recovery | Active.com
www.active.com/.../5-Phases-of-Stress-Fr...
... or months to heal. This five-phase recovery plan will get you back on the roads without setbacks. ... they've adapted. Stress fractures tend to occur in runners' pelvic areas, legs or feet.
Take care
Debbie

[Ivan]

Alright, so it looks like I have another problem to deal with. After the recent onslaught of crap (4 lung ablations, the first brain met in 10 years, etc) in the last few months, I went ahead and got that bone scan (all clear), as well as the abdominal CT on on July 31. The four ablations look good to me, and the local radiologist, and Dr. Littrup will review them later. As far as the lungs go, to my eyes, there seem to be 2 nodules which may have grown slightly. The 7.5mm nodule which increased from 6mm in 2009, I'm pretty sure is a slowly growing met. The second one I am not sure about yet. Other than that, everything looks good in the lungs. There are a few 6-8mm nodules which have been 100% stable for 4 years, and two dozen smaller ones likewise. I'm tracking 40 objects closely, as well as looking out for "new" nodules which pop out from not being visible at all.

But there is a much bigger problem. Getting the abdominal CT was a good idea on my part, because there are 11x5mm and 12x12mm nodules in the retroperitoneum just above the kidneys, in the right adrenal gland. Even having those nodules mentioned in the report, they were much harder to spot than lung nodules when I wanted to go and see them for myself. Fortunately, due to the location close to the base of the lungs, this area is visible in all previous lung CT's so I could find them in retrospective and measure. On a scan from merely 5 months ago, both of these nodules are barely visible (if at all) at maybe around 2mm each. Anything older than that, there is absolutely nothing there. This suggests a rather rapid (by my standards) rate of growth of 2mm per month. Other organs are not affected. Just like the brain met, my non-lung nodules seem to grow much faster.

A PET-CT and or MRI will be undertaken as soon as it's available (you know, socialized health care system with wait lists, although I should be given very high priority) to confirm the malignancy of the nodules. There is little doubt in my mind. The size is favorable for cryoablation, and it's indicated as a good treatment modality as per http://radiology.rsna.org/content/258/1/301.long

Dr. Littrup has been contacted via email today with a request to review the scan (with the link attached to upload it) and advise regarding the feasibility of immediate ablation. We are also looking at local options as Dr. Liu apparently has a lot of experience in the adjacent kidneys. So there I must admit, I am getting a bit tired of this crap lately.

[Jorge]

Hi Ivan,

Sorry to hear that. It's hard for me to accept this message as well. You're in such a good condition...

Fortunately, they are found in not very big size. Other than ablation, have you ever consider laparoscope?
Hope you can work out the plan asap with your doctors.

[Amanda]

Hi Ivan
I am sorry that this was found an you have been thru alot of wars!
But, you have been lucky they are wars you can win! If this is ASPS you will do it and go on as before! I know its hard i am feeling it right now also I am sick of this!
But, the times in between these stupid ASPS things are wonderful! You are young positive healthy and strong in heart and body!

Its just another hill you have been over MUCH bigger ones!

Try and look forward at the day after you get these taken out if they are ASPS an be thankful they can be removed!

Sending you a *hug* and i am telling myself the same thing i am typing to you right now... An its hard but we are lucky an we will get over this hill...

[Ivan]

Hi Ivan,

Sorry to hear that. It's hard for me to accept this message as well. You're in such a good condition...

Fortunately, they are found in not very big size. Other than ablation, have you ever consider laparoscope?
Hope you can work out the plan asap with your doctors.

Yes, subtotal adrenalectomy will be considered. I will see the urologist on Monday. Based on what he told the oncologist, it seems like he thought cryoablation was the way to go as well.

Amanda, the crappy thing about this one is that if you lose one adrenal gland it's OK. If you lose both of them, you are going to become a zombie on medications. Losing one is a good prelude to losing both.

[D.ap]

Ivan

With all of our hearts we are thinking of you
Please take care

Debbie and family

[Amanda]

Hi Ivan,
Are they saying they will need to take one for sure?

Hi Ivan

Amanda, the crappy thing about this one is that if you lose one adrenal gland it's OK. If you lose both of them, you are going to become a zombie on medications. Losing one is a good prelude to losing both.

[Bonni Hess]

Dear Ivan,
I am so deeply sorry about this new challenge in your courageous battle, but am grateful that due to your being so pro-active and vigilant with your scans that the two adrenal mets were able to be found at a relatively small and treatable size. Your astute observation that non-lung ASPS mets in other organs of the body seem to grow faster seems very accurate based on our experience with Brittany's widely disseminated non-lung mets. This is why it is so critcally important for ASPS patients to have complete regular scans and not just chest CT's as are too often scheduled by many oncologists. I am grateful that there seem to be some good treatment options available and that you are moving forward so quickly in exploring them so that you can schedule the treatment as soon as possible. Please know that my and my family's most caring thoughts and very best wishes are with you, feel the embrace of our special hugs, and keep the Board updated on your treatment plans as you are able.
Sharing the heartache of the diagnosis of your new mets and the anger towards this insidious disease with deepest caring, healing wishes, and continued Hope,
Bonni

[Ivan]

Hi Ivan,Are they saying they will need to take one for sure?

Based on what Dr. Littrup told me, ablation would result in "eradicating most of the healthy tissue". Thing is, ablation is likely to still be the best option.

Bonni, I have some further ponderings regarding the recent course of my disease.

1) I had a large met in my right lung, around 2.5cm, which was finally ablated in Dec 2012 after growing unimpeded since Dec 2011 after a failed ablation and a failed follow up. This was, by far, the largest met I've ever had.
2) In July 2012 I started training more and maybe for the first time in 10 years started to gain some muscle. Maybe 6 lb in the next 6 months.

After these two things which have never happened prior during my 10 years with ASPS, all of a sudden I get -

1) A couple of rather rapidly growing lung nodules (ablated 4 months ago) in 4 bilateral ablations which I've never had to do before
2) The first ever brain met (resected 3 months ago) - also the first ever outside the lungs
3) The first ever abdmoninal mets which have only visibly been there for 6 months, so maybe around 9 months in total (?)

So then, this anecdotal evidence suggests that this recent more active phase of the disease could be related to either my exercise regiment and anabolic diet or to the large metastasis which was destroyed around 9 months ago. There is no evidence to prove that there is a causal relationship between these events, and there can never be such evidence on one individual person rather than in a controlled study. Nevertheless, it may be prudent for me to -

1) Not try to gain any muscle mass
2) Not allows any metastasis get large (say above 1.2 cm)

The unfortunate thing is that after 10 years of lungs only, I have now firmly entered into the wonderful world of "it's all fair game". Considering this, and the fact that non-lung nodules tend to grow much faster, a very vigorous scan schedule will need to be maintained from now on.

It is by almost pure luck that the brain MRI was so close to when the met actually appeared. It was growing like it was on steroids. It is also fortunate that the adrenal tumors happened to start growing 6 months before a body CT (which I "remembered" I need to have because of the brain met proving that further dissemination is continuing). The last abdominal CT I had was back in 2010!

[jenhy168]

Hi Ivan,

Interesting to read about your thoughts in your last posting.

What drug treatment are you currently on...?

[Ivan]

Hi Ivan,

Interesting to read about your thoughts in your last posting.

What drug treatment are you currently on...?

None. I've never been on any, and will only consider trying anything only if resection / ablation / other local interventions fail.

[Bonni Hess]

Dear Ivan,
As you are now doing, we too tried to determine what may have contributed to Brittany's sudden onset of rapid and widely disseminated disease progression several years ago after what had been a few years of relative disease stability that included the still inexplicable complete disappearance of all but about five of her initial more than 50 lung mets. Our conclusion was that this is just the nature of this insidious and unpredictable disease to be indolent and very slow growing, and then to suddenly begin progressing which is why it is so critically important to maintain vigilance in having regular and complete scans that include more than just a chest CT. Regarding your theory about the possibility that your increased rigorous exercise regimen and anabolic diet may be contributing factors to your disease suddenly becoming more active, we have always personally felt, there is some data to support, and we have observed some anecdotal evidence of this with a couple of other patients, that eating a strictly healthy diet and taking dietary supplements not only strengthens the healthy cells, but also the cancer cells which then makes the cancer stronger and more aggressive. Therefore, Brittany doesn't take any nutritional supplements nor adhere to any specific dietary restraints, but then again, it unfortunately may not make any difference on the rate of disease progression with this unpredictable metastatic disease with or without a healthy diet and nutritional supplements. I agree that there is a possibility that your large 2.5 cm. lung met may have contributed to your recent relatively rapid disease spread to your brain and adrenal gland since it increased your body's tumor burden and may have decreased your body's immune system and ability to better fight the spread of the disease. This was our feeling about Brittany's very rapid and widely disseminated tumor spread five years ago which we suspect was caused by her very large and rapidly growing spinal met that inexcusably went undiagnosed on three different CT scans during a nine month time period. Of course, as you said, "There is no evidence to prove that there is a causal relationship between these events, and there can never be such evidence on one individual person rather than in a controlled study." Because ASPS is so extremely rare and there is consequently so little anecdotal patient information to try to draw conclusions from, the cause of disease progression remains at best conjecture. The critically important thing is to be vigilant and thorough with scans so that in the event of any new mets and/or increased growth of existing mets, they can be found and treated at the smallest possible size, as you have so wisely done. My continued most caring thoughts and very best wishes are with you Ivan, and I will be anxiously awaiting your next update regarding your treatment plan for your adrenal mets. In the meantime, take good care of yourself and have a good Pacific Northwest summer weekend doing those things you most enjoy.
With deepest caring, healing wishes, and continued Hope,
Bonni