Jussi from Finland - Dx 2008 - 30.3.1991 - 23.8.2019 R.I.P.

[D.ap]

Hi Jussi
Your positive and proactive plans sound good .
Where , if any ? do you /did you have a bone mets?
When was your last bone scan ?
And also, did you ever get a good analysis of a brain tumor testing ?

Been reading an Ncbi article on “Neuropathology of brain metastases “
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3656562/
Within the writeup the steps are
1) identify primary (you’ve done that) not a primary tumor that has metastasis within the brain .
2) nonsmall cell carcinomas are most likely to metastasis to the brain verses small cell carcinomas
3) pulmanary mets constitute the overwhelming majority of metastatic brain tumors
4) dx’d to mets to brain 8.5 months —maybe average
However 4months(lung carcinomas) to 37months (melanoma)

Note the “ General aspects -epidemiology “


“The most common primary sites for brain metastases are lung, breast, skin, kidney, and gastrointestinal tract with incidence proportions of 20%, 5%, 6.5%, 6.8%, and 1.8%, respectively.[2] CNS metastasis typically occurs late during the course of the systemic malignancies.”


Later in same paragraph -

“Metastatic sarcomas are usually not in the differential of unknown primary, since they tend to form bulky disease at primary location before they metastasize, although a rare, but notable exception is alveolar soft part sarcoma.[18,47,56]”

Which we all know to be true . Any tumor larger than 2mm has the potiental to send metastasis .As well as large tumors can go undetected if scans aren’t utilized .

With that being said I’d sure make sure all scans are upto date . Just wanted to remind you .

The summary

Summary

“Just as radiologists have developed new tools for identifying primary sites of origin for metastatic disease, the IHC armamentarium for pathologists has expanded greatly over the past two decades. This allows for more accurate assessments, even in cases where a primary is not identified radiologically or where multiple primary sites are possible. The role of individualized therapy is also increasing beyond just the identification of the primary tumor type, such that ancillary testing for ER, PR, and HER2 status is now common in metastatic breast carcinoma to the brain. To a lesser extent, molecular testing may be useful in select cases of metastatic lung carcinoma and in metastatic melanoma. Nevertheless, it is likely that molecular subtyping of CNS metastases by neuropathologists will continue to play an increasing role in the future.”


I found the article helpful as it addresses the diagnostic approaches to distinction of metastic tumors mutations .
It covers melanoma, sarcomas and carcinomas

[arojussi]

Looks like there is no cancer in my liver. Lesion is some kind of hyperplastic change. It hasnt grown. I looked scan myself and lesion doesnt look like asps met at all.

[Disco76lover]

So pleased to hear that Jussi. Hope you get word soon regarding getting cediranib.

[D.ap]

Evening Jussi
Has there been discussion of your brain Mri discovery being a possible autoimmune issue rather than a metastic disease progression ?
It still is surprising to me to think of there being 10 more possible mets appearing .
Maybe I’m being naive to what ASPS can do?

It’s my understanding that brain tumors , inspite of doctors thoughts prior studies , don’t come in multiple units but typically singles ?

Are you having an extended pelvic scan which includes your liver ? Kidney ? Adrenal area?
The pelvic area has certainly been active with Josh In his last 2 years of his 5 year journey ..
Hope you get news of cedirinib soon
Love Debbie

[arojussi]

I go over my logic behind new gamma knife treatment feel free to point out possible errors: As both me and my oncologist agreed that there is no reason to believe that Keytruda worked for me nor that immunotherapy would work for my brain mets as my resected brain met had hardly any mutations. Looks like pazopanib slowed growth a little, but it didnt prevent new mets. Only one irrariated met grew after srs, All other ones shrunk and appear dead. So to me answer is simple I must irradiate all visible mets. Radiation dose from srs treatment with linear arc for 47 mets was 9.8 Gy, so lets say those numbers are accurate, then radiation dose for treatment of 10 tiny mets with gamma knife would be way less than 3 Gy. This is less than one fraction of whole brain radiation, so new round of gama knife doesnt feel too scary. There is 10 lesions in my brains biggest one about 3 mm. Total volume of my 10 new mets is less than 150 mm3. This is extremely small volume, so even if not all lesions are mets radiation damage will be bigger if I wait and see which lesions grow bigger as I believe volume is more important for prognosis than number of lesions. Not to mention that local control with gamma knife is 100 percent only for lesions smaller than 6 mm in diameter. I really would hate to miss that window of opportunity. I hope that Cediranib would work for my microcopic brain mets, but I dont think it is realistic to hope it would destroy macroscopic brain mets. As I already had massive doses of radiation it is indeed possible I will develop dementia or other severe neurological damage and I am 100 percent ok with that.

[D.ap]

Jussi
Where are the 10 spots located ?
If you were to not treat the smaller spots with gamma knife at this time , could they be surgerically removed if they were to show signicant growth ?

[arojussi]

Surgery for 10 brain mets isnt possible for obvious reasons, so naturally I had gamma knife treatment for them at the end of november. If I understood correctly there were 10 lesions and neurosurgeon treated them all. I couldnt believe it as it sounded too good to be true. (Still does.) If new mets are found in the smallest possible size he might be able to continue with gamma knife if and only if overall volume stays small.

I stopped all tki medications before we travelled to China for gamma knife. I took my last pazopanib on sunday 26. day of november. So there has been 3 weeks and 2 days washout period. It is little longer than I hoped, but has allowed my body to heal from previous tki treatments. I start cediranib today evening with the dose of 30 mg. Soon we know if this is first tki, that doesnt make me constipated.

I been experiencing some more dizziness than before, most likely because I havent walked outside (because I hate cold) and just walking inside the house doesnt give enough practice to my damaged cerebellum. Well if I start carefully going to gym to practice my palance, that should solve the problem.

Next brain mri will be at the end of this year or early in january.

[D.ap]

Hi Jussi

I'm truly happy to hear of the brain lesions having been treated.

Who is overseeing your cediranib treatment ?

You are having monthly MRI's?

The targeted tumor to check progress will be in your lung area?

Your exercise plan sounds like a good move and hope to hear of your progress soon.

Love
Debbie

[arojussi]

Well there are no obvious new tumors in my brains and look like stereotactic radiation worked. Necrotic areas shrunk also.

There is small subcutaneus lesion around 1.5 cm in anterior side of my elbow. It moves when thouched and doesnt have visible blood vessels. It has grown a little, but even so it is most likely fibrotic lesion and not asps met, but we monitor it another moth and if it grows just cut it out before it becomes more difficult to remove. I believe biopsy wouldnt be much less invasive han just removing lesion at smallest possible size.

Brains are funny organ. Like muscle if you dont use it it detorietas quickly, but also recovers fast when pratice is continued. I always said that brain are like modeling clay.

Constipation is possible but rare side-effect of tki-medications. So far I have been lucky, but not anymore. Cediranib causes severe diarrea to me, but it helps greatly with brain swelling, so I just use lots of imodium for now.

Another scan next moth for the rest of my body as we only scanned brains for now to see effects of srs.

[D.ap]

Jussi
Excellent news of necrosis with the brain tumors !
Are you keeping hydrated well ? Any headaches?
You started on 30 mg of cedirinib is that still the case ?
It’s truly good to hear from you .
Debbie

[arojussi]

Had another scan. Brain and body. Apparently when it comes to contrast you have to prioritise one target. We choose brains obiously. Looks like I continue cediranib for now.

As you know I like to speculate, so I think out loud what to do once my asps grows again. It is of course very difficult, because i cant say where progression will happen. Keytruda obviously didnt work when we tried it for the first time, because I had antibioticts started with keytruda. Also my asps has only one mutation, so immunotherapy is very unlikely to work. But if I develop faster growing tumors or tumors in unusual places like pancreas or subcutaneous lesions, then immunotherapy is worth reconsidering. Possibly pd1 and ctla4-inhibitors together. As far as I know none of pd1-targeting drugs is better than others. Opdivo and Vervoy are first ones that come to my mind. If my asps keeps behaving same way as it has this far, then I trust heavily on local treatments and regular scanning. Bone mets are likely, but they hopefully can be treated by cryoablations or open surgery after empolisation. I still dont have fullbodybonescans, because radiation exposure. Mri from body should detect tumors there. Of corse my arms and legs arent scanned, but they are not vital organs, so I am villing to risk losing some of them. After cediranib there are other tkis, but they are less effecive. Anlotinib only in clinical trials, so bit unpractical, but maybe not impossible. Crizotinib high changes of disease stability, but very small response rate, so we could use it to buy time for local treatments especially srs for brain mets, but combining tki and open surgeries is very hard.

[D.ap]

Hi Jussi,

The scan was your 6 week scan from first dose of cedirinib?
About your liver and elbow lesicions ..are you keeping tabs on their status ?

Glad to hear of the continuation of the ced. : )

[D.ap]

Jussi
Found that the presence of the P53 gene presents a possibility of low MGMT proteins? MGMT deficient.(low)

If the mgmt protien is high , this is what could lead to drug resistance in the brain ?
Over active repairs(MGMT), verses under active and vulnerable nonchemoresistant tumors?

https://www.ncbi.nlm.nih.gov/m/pubmed/18647495/

Testing can be performed

http://www.cureasps.org/forum/viewtopic ... 534#p11751

[arojussi]

So my thyroid is off. In first sample TSH was 20. Repeated test had simplar result. Upper limit to tsh is 4.5, so this is way above mormal. My internal clock is still messed up, I woke up in 18:00 and had second blood test then. Even I seen a case were tsh was 25 and t4v was completely normal, but if tsh is already high most likely t4v will turn low sooner or later. And when tyrosin starts going down it will be unpleasant. So at the moment plan is to start low dose tyrosin. 25 micrograms for first week and 50 micrograms in second week. Now I take my cediranib when I wake up and you cant take it with tyrosin, so most likely I take Cediranib first and take tyrosin 2 hours later.

[Olga]

Jussi - I am not really familiar with the thyroid function testing, reading now. As I understand, the TSH level is a signaling from the gland to ask the thyroid to produce the T4 hormone (thyrosine). As of present, the request from your pituitary gland asking your thyroid gland to make is way up (5 times of normal) and it usually signify that the T4 is not being produced and the body keeps sending the increased request. Is your T4 still showing as normal? And you expect it to get down so starting the thyroid supplement as a precaution? Did I get it right?