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

[Olga]

Found something worrying. Given that cediranib is the more stronger TKI than sunitinib, it looks like taking both cediranib and avastin might be dangerous:
Avastin/sunitnib RCC trial closes after serious toxicities
http://www.cancernetwork.com/genitourin ... toxicities
In its July 14 alert, FDA declared, “Avastin is not approved for use in combination with sunitinib malate, and this combination is not recommended.”
The clinical trial investigator suggested that lower than the usual doses might have less side effects. I am not sure what doses are used in your treatment Jussi but I suggest to lower at least one of the drugs. Please review the article carefully, request the results of the halted study from the oncologist to know the risks.
I still do not understand why do you need to use both cediranib and avastin. Either one of them is enough to reduce the swelling and there is possibly no benefit of taking both?

[arojussi]

Thanks. It is much easier when I am not alone with these decisions. Using both Avastin and cediranib is dangerous, but it is safer than just using one of them. As I cant tolarate cortisol tki is really my only safe option for brain swelling and brain swelling must be treated. As sutent and avastin caused toxicity was reversable I can stop one medication if I develop Toxicity.

Today morning my heart rate was 67 and blood pressure 119/75. Dramatic improvement as before adding avastin and cediranib systolic blood pressure was 90.

[arojussi]

Cediranib is 3 weeks on 1 week of. 30 mg a day.

[arojussi]

Interestingly I have develop insomnia, agitation and some sleepiness. These side-effects are most likely caused by keppra and they actually lower my quality of life, so treating brain swelling aggressively could allow faster lowering of Keppra.

[Olga]

Avastin is used for brain swelling as well - in glioma I think.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4671800/

[D.ap]

Interestingly I have develop insomnia, agitation and some sleepiness. These side-effects are most likely caused by keppra and they actually lower my quality of life, so treating brain swelling aggressively could allow faster lowering of Keppra.

Time to incorporate sleep routines , when possible
Rountines are so important at any age .
What sleep aids are you using ?

https://www.sleepfoundation.org/sleep-t ... sleep-tips

[D.ap]

Propranol can induce insomnia as well.

Maybe looking at your time of day when it’s being taken?
A different schedule ?

https://www.everydayhealth.com/sleep/me ... sleep.aspx

Can melatonin help ?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3195193/

[arojussi]

I have slept during weird hours my whole life. Embarrassing and sometimes I have sleepless nights as rest of the world still lives under normal time table. It is nothing new. I have been using propranolol for moths and it hasnt affected my sleeping pattern. However after adding keppra I have been having problems with staying a sleep. This is completely new and affects my mood.

[arojussi]

Well after starting keppra I have been unable to stay sleeping. Completely new. As sleep deprivation is very bad for heart I am now trying one night without seizure medication and hope that treating brain swelling aggressively will be enough to avoid seizures caused by brain swelling. Interestingly avastin gives me constipation and cediranib diarrhea, so they balance each others out. It is delicate balance, but so far it is working. As my blood pressure has always been low and I was hypotensive blood pressure 90/50 before starting avastin and cediranib together I consider this combination safe for now. Now my blood pressure is ideal.

[arojussi]

Apatinib could be worth a try if we can get it.

[Ivan]

Indeed, according to this - http://ascopubs.org/doi/abs/10.1200/JCO ... ppl.e23521 it seems fairly good for asps. Was that the paper you saw as well? It's very recent.

[arojussi]

Yes I found that one too. Some asps-patients have used Apatinib already, so there are singe cases supporting this drug as well compensating for small sample in this trial.

[Ivan]

Lynette said that some Chinese patients are taking it but the results are so so. Not very different from other tki.

[arojussi]

Thanks. Well looks like my response to immunotherapy is really mixed and slow, but as effusion from pericardium disappeared when I was using just opdivo. Cediranib was on the breark, because of radiation. Heart rate has gone to 70 from 110 it was last summer I consider pseudoprogression to be most likely explanation. Especially as my brain scan looks very similar to asps-patient who`s tumor growth in the brains was confirmed to be pseudoprogression after surgery. All tki has to do is keep me alive until immunotherapy kicks in. Also subcutaneous lesion is shrinking and turning red. Most likely t-cell activation. I cant prove, that asps growing would be impossible, but I believe pseudoprogression fits better. As my heart function has improved this much I am definitely not as close to heart malfunction caused death as I was 6 moths ago. Basically question is if apatinib is better option than axitinib. As using both ceriranib and avastin has improved my blood pressures a lot I figured to continue with my current medicines for now and rethink if situation changes. As usual I would like to make plans before thinks go wrong.

[arojussi]

As ultimate back up plan is to radiate heart met itself to attract lymphocytes to tumor site I am really motivated to try safer options first. Radiating the heart met has realistic change of working. But damage to coronary arteries is virtually certain.