Sarcoma…possible Solutions

thanks beaniegrl...i did some searching but I really didn't come up with anything concrete...I probably didn't give it as much time as you did and I was kinda in a hurry to find something out.  
 
thanks again...
 
 
something I will pass on that i am noticing and my family is noticing too....i can be very irritable...and the littlest thing I can loss my temper on...its got to be some of the meds i am taking...at least i hope it is.
 
just feel squeezed real tight sometimes...even catch myself yelling at my dog simply because he is around me wagging his tail expecting a treat (under my feet) but i make up to him...lol

 

 

I tried vaping the other night and i feel like i took to much...i was really messed up and I didn't like it....haven't done it for over a week.. i took some liquid THC tonight to see if that helps any.
 
the irritiablitliy is getting real bad...called KU today to maybe get a handle on it...didn't get a phone call back yet....i forget things...I have been wearing the same pain patch for 2 weeks and forgot to change it...finally changed it and it really helped the pain in the back..some of the pain i really think is associated with the discs in my back....once i changed the patch it helped...called for an appointment to see my personal physician to get more hydrocodone and its time for a shot in my shoulder....the tips of most of my fingers are getting very raw and sensitive...wash my hands a lot and use triple antibiotic...wear thin cotton gloves and it helps.  probably need some patches for the nicotine too ran out last week....miss the pipe tobacco some but its not a deal breaker right now
 
i have been out of the RSO...didn't take the full dosage....long story and it bothers me....lots of things are going on and I think with everything its just made me kinda of a mess.  got to get a handle on this irritability...dropped a can of pop today and I went nuts...had to really mentally get ahold of things...lot of stress felt in my chest...
 
things are better tonight...
 
only 4 more sessions!!  thanks for being here....

 

Went to KU last Tue for a p-scan...then back thur to see cancer doctor and get 3rd treatment.  After looking at the p-scan the tumor has shrunk about 50 %.  Started the steroids on the day of the chemo.  Physically, i feel pretty good but i am having trouble "emotionally".  I fly off the  handle sooo easily, over stupid chit.  My cannibis intake is pretty much nill.  I would post of picture of the tumor later,,,just dont feel like doing it right now.  Just wanted to update because some of you have been following...
 
thanks
 
have a safe and happy Xmas
 
oh yea, the plan is to do another treatment and see wherre the tumor is at...if it hasn't shrunk they way he  wants he will stop THAT treatment, take out some stem cells and give me a real heavy dose.  If it has shrunk the way he wants then i will just do 2 more after the next one.
 
my family doctor is giving me some pills for depression to help with the "flying off the handle stuff".  Mind can really get screwed up with this stuff....thinking and memory...

 

I knew it had been a while but didn't realize how long.  For those who are interested I will bring it up to speed...
 
Went through 4 rounds of RCHOP chemo (what did I notice?) the tumor shrunk almost half with using 4 weeks of RSO and  1 round of chemo.  After the second round of chemo I ran out of the RSO ( money + logistics + timing).  I did however continue to use the vaporizer.  Kept my weight on...helped the appetite big time and the pains I have.
 
After 4 chemo's (RCHOP) the doctors are changing direction...I will now do 2 rounds of RICE and then they will take out stem cells for a week,  and then the big one.....  BEAM.  It will totally destroy all my white blood cells and even have an effect on my bone marrow.  After the BEAM they will put my stem cells back in and hopefully my immune system will come back without me having any infections.  Dr's indicate that this is quite a process and will take some time (June or July before I get back on my feet).  
 
The thing with my sinus....I had a port put in so they could access my circulatory system easily.  Well I developed a blood clot in that area eventually causing my sinus problem AND swelling in my neck.  They did an ultrasound and a c-scan.....got it out real quick, on blood thinners for the duration and the sinus and neck problem is gone.
 
Took my first round of RICE last Thur.  was a challenge but not insurmountable.  I dread the BEAM.
 
The RICE will probably get the tumor but they are doing the BEAM because, quote "hit it hard and fast" and my body will have a better chance of remission.  Well I will tell you this....this ole boy is gonna get things lined out and I will not have to worry about getting medical grade cannabis....I will keep it in remission by my own methology,   Did I tell you I am very proficient at gardening?
 
thanks to everyone who is following...sure is a LONG road and wouldn't wish it on anyone! 

 

looking back on everything i would say it was a timing thing.  1) initially getting the medical grade cannabis (we made the oil ourselves) 2) logistics (what we used we had to go to colorado)  3) timing...I had enough to go for 4 or 5 weeks then the chemo started, told my doctor about it, of course his head was in the sand 
 
The real thing that I regret is being able to get a p-scan 6 weeks after the initial p-scan....why?  I know as an absolute that the tumor shrank with the RSO.  My body told me...during that time no chemo and asking the doctors for another p-scan to show shrinkage due to RSO would be like trying to get milk from a steer.  In that time frame, in their minds, the tumor was growing.  
 
I remember vividly, the doctors expression when he showed us the 2nd p-scan....in his mind the tumor had shrunk (using their numbers) from a 13 to a 7.  He line of thinking was that the chemo was doing a kick ass job.  LOL
 
You have to remember their mindset, different than the everyday Joe and Joan.  If you don't believe me just ask them....hehe
 
2nd thing was...I was kinda scared with doing both at the same time....this chemo stuff affects your immune system big time.  I didn't want o put something in my body that could be carrying a type of fungus or pathogen.  They have me on pills for that right now.

 

just thought I would put in a status because it has been a while...
 
have had 6 treatments of chemo since last Oct.  the last 2 have done minimual shrinkage to the tumor.  The real big "shrink" was initially when I had just completed about 4 wks of the oil.  Am going in next Tue for a biopsy procedure (will take around 3 hrs for this) they will fix a hernia that I have at the same time.
 
MY PLAN...find out where I am at with the biopsy and in the meantime start some plants so as I will be able to have my own oil this fall.  Irregardless, I honesty think the oil has had the biggest impact on the tumor.  If and when I need the oil I will have it.  Since this type of cancer has a high chance of returning I feel confident the right kind of oil will keep it in check.
 
 

 

followup....been a while and things are somewhat back to normal. Without going thru the thread, not knowing what I have and have not posted, I will just give a status report.
Biopsy was done and the material they took out had NO cancer cells. In describing what the surgeon took out it was the size of a fried egg (don't know how thick). He said if you looked at it the matter would look like "fat". In doing the procedure he did remove some lymph nodes. So for now I am done with treatment. Will have a P-SCAN around Xmas as a follow up.
In the mean time I was able to have hernia surgery and that WAS and IS a big difference in how I feel. Still can't overdo it. Go back and see the hernia doctor for the last time next week.
Insofar as using the cannabis...I still use it for the pain in my body (torn rotator cuff and the arthritis). Have things lined up for when this cancer comes back (have access to the oil) very readily. When it appears I will go to that immediately.
For those who have been following...wish you the best in your in devours and God Bless You All!!!
drifter

 

fyi...smoked a pipe but quit that when I started the chemo. Still have a craving for long horn (sharp) cheese, summer sausage, and spicy chicken broth with romain noodles. I ate a lot of that (and watermelon) when I was going thru chemo. My downfall right now is that I have this insatiable craving for chocolate covered peanuts...lol
yes on the maintaince thing...what I have read is a "grain of rice" per week

 

Today is March 13th 2016

Update:

Last month, around the 20th of Feb, I went in to my family doctor about the pain I was having in my back. Long story short, did a MRI and found the 2 bulging disc I have had grown in numbers...4 bulging discs now AND yes, they spotted the growing tumor. According to them it measures 154mm x 98mm. When I had the biopsy last April, when they told me the cancer was "dead" the mass was at 116 mmx 98mm.

Tumor is back....

This time around I was a little more prepared. Had 3 grams of oilstashed away and got started on a treatment that would get me through the prescribed treatment of(60 grams). For almost a week I have been taking 1 gram per day. Next Tuesday I go in for a P-SCAN and hopefully the tumor will have shrunk some. I am hoping for at least 20-25% shrinkage.

Was taking 5 to 6 oxycodone per day for pain....since I have been using the oil AND smoking some cannabis from time to time I pretty much have shut down the pain pills.

Knew it would come back but was hoping for a little more time...lol

Needless to say, the back surgery I was going to have has been put on hold....

How I feel...my pain is really held in check, the pain that I was feeling from the tumor...don't really feel. Either the oil and cannabis is masking the pain, tumor has shrunk or both. The back pain is more of a burning pain...the pain from the tumor was more of a pushing or straining pain. I can lay on my back, something I couldn't do before I started using the oil.

picture shows enough oil rationed out for about a week (with whats in the rice cooker....

 

pscan was cancelled....I have BCBS and the hospital said they do not have a contract with them. At this point in time, don't care, will go to another town (close by). P-scan is scheduled for tomorrow (Monday, March 21st).

 

drove 100 miles today for the P-Scan. Will not see the cancer doctor till a week from next Wednesday. Asked them to send results to my family doctor as I have an appointment with him this Friday.

I will find out then if the tumor has shrunk.

 

Went to family doctor Thursday and had the results set to him. The cancer doctor I will see a week from this coming Wed. My personal physican couldn't really tell me much (all he had was report from radiologist, no pictures). He really couldn't tell me much cept it has spread some to the other side of my torso. Indicated that I had a "moderate" in size (fluid around the lung). I did get some water pills....have lost almost 10 of fluid over the past 5 days. In my legs and feet...hoping that some of what is in the lungs is leaving the body also. Don't notice the "out of breath" thing as frequently. Before weighed 197, weighed 186 this morning.

Have been sleeping in bed all night long (cept to relieve the water thing). Something I couldn't do 3 weeks ago. Am having some minor issues with vomiting. I have learned that whatever I need to take EACH day I should break it down into 1/4's or 1/5's. If I take some medicine it usually takes about 3-5 hrs before I really start "feeling" it. Sometimes my stomach, for one reason or another, reacts and I have vomiting. Lot of the times it is just heaves but neverless I can control it by spreading the medicine out and making sure I have something in my stomach.

Right now I don't really feel that I want to do the chemo....will wait and see what the doctor thoughts are?

It is very obvious to me the oil has shrunk the tumor.....as I said, I can now lay down and sleep. Before I couldn't even lay down for 2 or 3 minutes, sleeping was done sitting up and I think that is, in part, why I had so much fluid in my body AND i haven't been getting out like I should.