Proton Complete, Just Avastin

Well I finished the proton therapy last week.It was a lot easier to handle then IMRT back in 2010 I think because of The lack of chemotherapy While doing the radiation.

So as it stands today the only therapy I am doing is the Avastin. The plan is to Continue this Until either the MRI shows that there is more progression or I cannot tolerate the Avastin. So far the advanced and side effects have been minor. Some nose bleeding and problems breathing Very similar to What I've experienced in the past.   I need to keep a close eye on my blood pressure It went up a little bit last time and it is one of the major risks of this drug.

One thing that I did not cover in any previous posts was That the radiation oncologist had Told me that the last progression that was seen that took out my vision was probably because of an effect He called " Avastin rebound " that causes tumors to GROW when stopping  Avastin! He badgered me for making the decision stopping it. This was not the first jerkish treatment he gave me and I have since told his office I will not be seeing him anymore.
On top of it when I talk to the Neuro oncologist about this rebound effect, he said the growth could have been from this effect,  but it was far from  a matter of fact. Two doctors, same hospital, two totally different messages. Nice. Next of this is the fact that eventually I am going to have to stop the avastin. Disk leaves a very dark cloud on the horizon When that day comes.  Hopefully the circumstances around the future decision to stop the Avastin are much more serious than the possibility of any possible rebound effect. yeah 'hopefully'. I've had 9 Infusions so far, and the plan is for one every three weeks.

MRI coming early March. This MRI will give us an indication if the proton therapy worked and if the Avastin is working. If we see progression here It indicates that neither worked and the decision to Stop Avastin Will be forthcoming leaving a  lack of any treatment... watch and wait they call it.

Progression continues

Here is a brief summary of the past couple years followed by some recent developments
From June to August in 2018 MRI's revealed a small spot that Grew aggressively Around the motor strip
The symptoms around this time were left side weakness, Vision problems and mild confusion
In September I started avastin and dexadron steroids
TheMRI in October looked promising - 
Open in November I started having breathing and bleeding, abd cramping  problems After 5 Avastin treatments.
Pin MRI in December revealed that the tumor has grown another 15%
In January I started having Vision problems causing me to run into things.

Citing the progression of symptoms while on Avastin, I stopped getting it.

In January  '19, I started the proton therapy and re-started the avastin
Mid January an MRI revealed that the tumor in the vision part of my brain got 'a lot' bigger in a few weeks, and the tumor by the motor strip also progressed.
  the radiation ation oncologist decided to increase the areas of the brain that were being treated to account for the larger tumors.

Vision loss and proton therapy started

When I reported to my radiation oncologist that I was having big problems running into things on myleft hand side; Like people standing in the supermarket, signs in the middle of an aisle You name it. He did a quick check of my peripheral vision and found that I have pretty much lost the left hand side of my peripheral vision.He then talked me into starting up the aAvastin again It has been 6 weeks since my last infusion and  my mouth and nose finally stopped bleeding.I am not looking forward to Continuing this and suffering the effects of the proton therapy at the same time, but the fight continues.They also put me back on decadron a drug that I definitely do not like.I have had three of the 25 proton treatments. The treatments are not painful at all , it is very uncomfortable being strapped into that machine,andthe morning after I wake up very confused and disorientated. Lastly,I have Lost A lot of the strength in my left hand limbs Similar to what I lost after the surgery in 2016 and eventually regained through physical therapy.

Moving forwaed with proton Therapy, Fed up with medical treatment

I had the proton mapping session last week where they make a mask  that holds my head in an exact position in the proton machine. and take a cat scan to see where my tumor is relative to the machine.

Me strapped into the proton machine. Note I am sitting up as opposed to lying down.

its quite daunting compered to the Radiation machine I encountered back in 2010 that resembled a cat scan or MRI machine. The proton machine is huge with a cannon-looking barrel hanging from the ceiling. It felt like a huge gun was pointed at my head. No pain or anything, just creepy scary. From here, it takes a couple weeks to program the machine to position the gun and determine how to shoot protons such that they land in my tumor.The nurse called yesterday and said the first treatment will probably be in the beginning of January and each treatment will probably start between 4 ab 9 pm. that time frame is kinda of a drag because it is very inconvenient to the people giving me rides. I hate to be a burden, and this will be 5 times a week for 5 weeks.

I tell ya, I was on the edge  of deciding not to do this poton therapy. I am pretty happy with the state of my current capabilities - being able to see and move around. The radiation oncologist said there will be some collateral damage in the ares around my new tumor, left body motor strip and optic nerves., but he added "I'll do much less brain damage that tumor will do left untreated." He was not willing to give an estimate on how long this treatment will hold back the advancement of the tumor.I was also concerned about the cost and and reinsurance pre-approval. the business office guaranteed that even if denied by the insurance, all I will be responsible for is the deductible and max OOP, they will eat the costs over that, but this is still several thousand dollars. Past all this, there are really no other treatment options at this point.

They also want to continue Avastin during the therapy - but I plan on refusing this. The biggest problem I have with Avastin  is the mouth sores that bleed especially when I eat anything remotely crunchy. I also makes me very tired to the pint that I fell asleep while jamin' to ZZ Top yesterday.

My cognitive skills are degrading to the point that I really can't do my programming exercises on my  computer. This took a lot of my day which now leaves a big void. I'm extremely bored these days.

Another factor in my trepidation deciding to do the proton is my growing disdain for the medical field. I am continuously catching mistakes. I ordered a refill of my seizure medication   and was very clear what pharmacy to send it to. the pharmacy calls me up and says the insurance was denied because they are not contracted to dispense that medication. this is BS - they filled it before. I end up arguing with them to convince them that they are telling me can't be correct. very frustrating and makes me angry that everywhere I turn people can't do their job. Another bigger example is that when I first complained to my neuro-oncologist about what the Avastin was  doing to me (besides not working), he said that he would reduce the dose and frequency.At the next infusion two weeks later I asked the nurse to make sure the dose had changed since last time. Guess what? NOPE.How am I to trust these people going forward? A constant source of angst.Is the proton plan the right dose? pointed at the right location? If you have read this blog from the beginning, recall the doctor got me confusec with another patient and mistakenly put me on chemotherapy for 7 months. All this makes me want to st fck it, let's just let nature take its' course. I think I would be a happier person compared to the bitter, paranoid state I am in now,.OMG typing a PIA, sny word thsf uses a key on the left hand side of the keyboard getd secrewed up. time for a nap, have a Merry Christmas and Happy New YeR!

Avastin not working

MRI last week has shown the tumor has grown 10-15% compared to MRI 8 weeks ago.It's smashing into the left ventricle (cavity that holds spinal fluid for the brain) . you can see the ventricle as the black areas in the pictures in a previous post:
https://edslas.blogspot.com/2018/09/recurrence-three.html

The ventricle by the new tumor now is almost smashed closed. I guess I'm kinda lucky it smashed into  fluid filled cavity, smashing into brain tissue would lead to further neurological problems. Currently, my left leg is getting more week and has loss of sensation. A couple days ago while trying to change shoes, I tried to put on my new left shoe before taking off the old one and could not figure out why it would not go on. I walked away with two shoes on my left foot.

I am meeting with a radiation oncologist on Monday to talk about the possibility of proton therapy. I was told back in 2010 that this was not an option because my tumor was too big for the very precise proton therapy. Now I have a bigger tumor,  it'll be interesting to hear what they have to say. I am also concerned if insurance would cover it. I've read stories of people paying for it out of pocket.

It will be an interesting couple months.

Breathing Problems

Ever since I started the Avastin/Steriods a couple months ago  I have experienced  shortness of breath and chest pain when I take a deep breath. The deep breath pain happens even at rest, the shortness of breath after mild activity, such as getting dressed.  In my typical fashion, I decided to wait and see if it goes away. Well it didn't, and oncologist said to go see my PCP.
My PCP prescribed:

Omeprazole(Prilosec) 40 mg capsule / 1x/day
a proton pump inhibitor that decreases the amount of acid produced in the stomach.
Montelukast (Singulair) 10 mg tablet / 1x/day
Montelukast is used to prevent asthma attacks and also used to prevent exercise-induced bronchospasm

He told me that if I don't feel better in three or four days to get a ultrasound of my abdomen to see if there is a buildup of fluid and a Pulmonary function test to see if my lungs are working right. He added that if I do feel better to keep taking this medication for 30 days. I'm at day two taking these meds.

On a happier note, I have not had any of those terrible leg cramps since I stopped the steroids.

I've had 5 Avistan infusions so far. Next MRI/ oncologist visit is at the end of November.

Dramatic Weight Gain

I have put on 20 lbs over the past 6 weeks! -this is the time frame I have been on Decadron and Avastin. My appetite has been out of control, and I have been eating a lot more than usual, but geese I wouldn't think one could pack 20 lbs this fast. My gut is so large that I have a real hard time bending over to put my socks on. Most of my pants don't fit anymore. My weight last year before the PC-V chemo was steady around 185. Loss of appetite and lack of exercise while on chemo for 9 months dropped me down 15 lbs to 170.I have a call into the doctor to make sure this is not a sign of a bad reaction to the medications.  Tomorrow is my last day of weaning off the decadron, my appetite has receded some - hopefully I can get back to 170.

I'm still having the severe leg and hand cramps, but not as frequent. I have learned some triggers and avoid them vehemently. One trigger was the curling of my foot needed to put on shoes. Now a wiggle to get the shoe as aligned up as possible and only press strait down. The other odd thing I caught onto was the attacks would usually happen shortly after I woke up, sometimes waking me up.Now I'm careful to not get out of bed immediately and give myself a couple of minutes of gently wiggling my toes.  Even with these adjustments the leg cramps are happening a couple times a week and injure my legs so bad I hobble around for days in pain. My hands cramp up a lot when I do any fine motor control like using a pen or going to pick up small objects.These are just as painful as the leg cramps, but don't last as long and have no lingering pain after they subside. The doctor did some blood tests (Calcium and Magnesium levels, I think), but they came back normal. I'll push the issue with the doctor if this continues past the Decadron and Avastin. Enjoy my mug shots 6 weeks apart.

The past week or so I have been having pressure headaches and have been generally out of it. My left eye hurts too. I came up with a catch phrase for this "out of it" state of mind..."observation mode". Its a state of mind where I can see and hear everything around me, but do not have the sense I can process,store and react to any of it. Then when people press me for a response, I don't have a grasp of what was said or what I saw and I end up saying something like "what?, I don't know what you are talking about". How often during the day I drop into this observation mode depends on how my head feels.

I'm tired of writing, so I'll sign off.

October '18( 190lbs)

July '18 (170lbs)