Like many cancer patients in the modern world I am part of support groups on Facebook. In one of these groups a truly marvelous individual just lost the battle and has passed on. Instead of doing a normal blog post today I thought I would share a song written and performed by this individual. I never really got the chance to know him. But this song really hits close to home.
Earlier this week I mentioned being able to see my second PET scan result. This is a scan that not many people know a lot about, including myself before I first had to get a PET scan. So for this weeks multimedia Friday post I thought it would be worthwhile to share a couple of videos about the PET scan.
Up first is a video explaining the basics of how a PET scan works. This video is just over five minutes long.
Up next is a video of someone showing their PET scan results. I like this video because it shows the “slices” of the body in the same way my oncologist shows me the scan results. The video also includes white spots similar to the cancer in my scans taken. This video is just under 8 minutes long, but only about the first four minutes are looking at the PET images. The author of this video does not allow it to be streamed from other websites. But if you hit play on the video you can simply click on “watch this video on YouTube”.
Finally I want to share this video explaining the difference between MRI scans, PET scans, and CAT scans. I found it to be interesting. The video is five minutes long.
Bonus Music Video
Up first is kind of a silly song from comedian Dana Carvey. But I couldn’t get this song out of my head earlier this week when writing about R-CHOP, the chemo regiment I am on. Even now in the back of my head I’m singing the lyrics “Ima chopping broccoli!”
For the metal fans we have System of A Down with their song Chop Suey. Not only does this song include the word chop, but in many ways it probably is relevant for too many cancer patients.
Recently I have had discussions with people who were under the impression that cannabidiol (CBD) has been legalized in South Dakota. That isn’t quite true. It is true that in 2017 the SD legislature passed a bill with a narrowly focused move forward towards legalization. But overall CBD oil is not truly legalized, especially not for cancer patients.
In 2017 the South Dakota legislature passed SB 95 and Governor Daugaard signed it into law. This bill as signed into law did a couple of important things:
- Section 1 of the bill made the following change to the definition of marijuana in SDCL 34-20B-1. The parts
striken throughare what the bill removed from the law. The parts underlined is what the bill added to the law.
(12) “Marijuana,” all parts of any plant of the genus cannabis, whether growing or not; the seeds thereof; and every compound, manufacture, salt, derivative, mixture, or preparation of such plant or its seeds; but. The term does not include fiber produced from the mature stalks of such the plant, or oil or cake made from the seeds of such the plant, or the resin when extracted from any part of such the plant or cannabidiol, a drug product approved by the United States Food and Drug Administration;
This part of the bill removed cannabidiol (CBD) from the definition of marijuana. This is important because it potentially dramatically decreases the penalty for those caught with CBD oil.
- Section 2 of the bill adds Cannabidiol to the list of Schedule 4 drugs for South Dakota. The law listing the Schedule drugs can be found in SDCL 34-20B-25. Originally the bill listed had it worded as “Cannabidiol, a drug product approved by the United States Food and Drug Administration.” This was amended during the committee process to remove the reference to the FDA. But, from what I understand any Schedule 4 drug in South Dakota already needs FDA approval and needs to be prescribed by a doctor. So adding Cannabidiol to the list of Schedule 4 drugs does not open up CBD for use in SD. It is only allowed for cannabidiol products specifically approved by the FDA.
To summarize the above sections, this bill does as passed into law does three important things:
- SB 95 removed CBD from the definition of marijuana.
- SB 95 added cannabidiol to the list of Schedule 4 drugs in South Dakota.
- Schedule 4 drugs have to be approved by the FDA, prescribed by a doctor, and the prescription filled by a licensed pharmacist. That means any CBD not fitting the preceding metrics are NOT legal in SD.
Right now it appears that Epidiolex, a CBD manufactured by GW Pharmacies and used to treat some forms of epilepsies, is the only CBD product approved by FDA. Actually during testimony of the drug GW Pharmacies tried to get the bill even narrower in scope to ensure their drug Epidiolex was definitely the only CBD drug that would be approved in SD.
The main thing to remember is that the claims made by CBD oil companies that cannabidiol products are completely legal in all 50 states are false. Some of those companies will still ship to you in SD, but it not legal for SD residents to use these products. Only CBD products specifically approved by the FDA, then prescribed by a doctor, and the prescription filled by a pharmacist is approved in SD. Currently that makes Epidolex the only product actually legal in SD. Hopefully this will change in the future because in my research there have been some cancer patients who responded positively to CBD.
Last Wednesday I had my second PET scan done to see how well my first three rounds chemo has been working at pushing the lymphoma back. Friday of last week I posted about the scanxiety of waiting for those results. Luckily over the weekend the notes about the scan had been released and it appeared to be good news. Yesterday during my scheduled round of chemo I had an appointment with my oncologist so I could actually see the scan images and get her take on the scan notes. Overall I will say it is great news!
The original PET scan reminded me of a fireworks display show. This scan looked nothing like that. Previously I had what appeared to be dozens of lymph nodes from neck to groin lit up with cancerous activity. This time there were no lymph nodes showing any activity. In the first scan my spleen was very over-sized and most of was showing cancerous activity. This time my spleen was almost down to a normal size and showed no cancerous activity. One of my lungs showed quite a bit of cancerous activity. With this scan there was no presence of cancerous activity. I was ecstatic to see this dramatic change.
The cancerous activity was not all gone. My bones still show activity in them. But that cancerous activity is greatly diminished from what it was. The oncologist says it is normal for the bones to take longer. She did say she is happy with the progress made on the bones, even if it is not as far along to being in remission as the rest of the cancer is. I guess bones take a lot longer to heal.
In the notes from the imagine expert it was noted that I have sinusitis. I was given a Z-Pack prescription to take care of this. Despite my best efforts to keep germs and bacteria away, I must have picked up a cold from somewhere. Luckily it isn’t anything too serious. I actually already figured I had something going on with my sinuses for the last week or two due to a stuffed/runny nose and coughing. But part of me thought it was just a side-effect from a chemo drug or fall allergies. Actually I wonder if fall allergies lowered my immune system even lower so I was able to catch some sort of cold.
I just finished my fourth round of chemo today. After six rounds I will have another PET scan done to see if I can stop there or have to go the full eight rounds. I am really hoping I only have to do six rounds. This chemo stuff is very hard on the body and mind. If things go right my final round of chemo will fall on the day after Christmas. That should make for a happy holiday season.
PS. You may have noticed I said I spoke with my Oncologist on the day I was scheduled to have chemo. My chemo was postponed a day due to the hood used by the pharmacist while mixing chemo was broke down on Tuesday for a time. It was repaired and I did chemo today (Wednesday) with no problems. I don’t blame the pharmacist for not wanting to mix chemo chemicals without proper ventilation, this stuff is very toxic!
A follower of this blog noticed I’ve mentioned R-CHOP often as being the chemotherapy regiment I’m on. She asked if I could briefly explain what this means as she is about to start R-CHOP chemo herself. The doctor did give her information about R-CHOP, but it was basically just a sheet explaining the many side-effects which are possible. In this post I will try to briefly explain what R-CHOP is.
What is R-CHOP
R-CHOP is a chemotherapy used specifically to treat non-Hodgkin lymphoma. R-CHOP actually is actually an acronym for the five drugs that are used together to best battle the lymphoma. Combinations of drugs are often used in chemo. The five drugs which make up R-CHOP are as follows:
- Doxorubicin (Hydroxydaunomycin)
- Vincristine (Oncovin)
Explanation of each drug in R-CHOP
Only three of these drugs are actually chemo therapies. One is a targeted therapy drug and another is a steroid. Here is a further breakdown of these five drugs.
Rituximab is not actually considered a chemo drug. Instead it is a type of targeted therapy drug known as a monoclonal antibody. Here is what cancer research UK has to say about this drug:
Monoclonal antibodies target proteins on the surface of cells. Rituximab targets a protein known as CD20. CD20 is found on white blood cells called B cells. It is the B cells that are cancerous in the most common type of non-Hodgkin lymphoma.
Rituximab attaches itself to the B cells and marks them. The cells of the immune system recognize the marked cells and kill them.
It is a pretty cool idea to use the body’s own immune system to fight cancer. Rituximab is given via IV just like the chemo drugs. It is also the drug that makes the first round of chemo last seemingly forever. This drug has a lot of potentially nasty side-effects and the first IV has to be done very slowly to determine if the drug can be safely used for a patient.
Cyclophosphamide is one of the three chemo drugs. It is classified as a “cytotoxic agent” due to it being toxic to both bad and good cells. This drug is given through the IV.
Doxorubicin is also a chemo drug. This may be prescribed as Adriamycin. It is given through an IV. Cancer patents often know this drug as the “red devil”. I have to agree with this name. The drug is deep red. It looks like a poison to me, but I’ve heard other say it looks very cool. It is also very dangerous if it leaks on the skin or out of a vein. But it is also a very effective chemo drug, so I find the risk worth it.
Vincristine is the third and final chemo drug in the R-CHOP regiment. It is also given through an IV.
This is actually a steroid, and not a chemo drug at all. Some patients have Prednisolone instead of Prednisone during their R-CHOP treatment. This is taken as a pill instead of through the IV. In fact I take this the day of chemo, and the four days following. While prednisone has anti-inflammatory properties, it is used in this chemo regiment because it can “stimulate programmed cell deaths“.
How often is R-CHOP given
R-CHOP is typically given every three weeks. Each three-week period is called a cycle. I’ve read about two-week cycles, but honestly I can’t imagine being so aggressive with R-CHOP unless it was absolutely necessary. R-CHOP can last up to 8 cycles. In my case I was told I would likely be on R-CHOP for 6 to 8 cycles. As I write this post I am actually preparing for my fourth cycle. Today I should either be half way done or two-thirds of the way done with my chemo treatment. The results of my PET scan will help determine that.
Other thoughts on R-CHOP
I’ve heard of R-CHOP being referred to as a “shotgun approach” due to the mixture of drugs. I don’t think this is an unfair assessment of R-CHOP as a treatment. One of the problems with certain blood cancers, such as some types of non-Hodgkin lymphoma (NHL), is that they are not curable and can only be pushed into remission. NHL patients often have to wait for their symptoms to be bad enough for treatment. When they finally get that treatment they want it to be as potent as possible to help prevent the need for further treatments any time soon. Personally I am thankful R-CHOP treatment exists. At the same time though I hope new treatment options are created in the future which aren’t so hard on the body. And yes, R-CHOP is very hard on the body.
Last Friday I posted about my scanxiety related to waiting for my PET scan results. Originally I thought the wait to see the results would last until Tuesday (tomorrow) when I see my oncologist prior to chemotherapy. Luckily though I was able to see the results of my scan this weekend as they were released to my chart. After reading the results I can say that I am very happy with my response to chemo.
Here is part of what was posted in the lab results part of my online chart:
1. Compared to prior PET/CT 9/5/2018 widespread nodal involvement above and below the diaphragm, splenic and widespread skeletal involvement in the axial and proximal appendicular skeleton have regressed in size and metabolic activity is now normal. This is consistent with a complete metabolic response to therapy. Previously the patient had level 5 disease on the 5 point system and this is returned to level 2 disease of the 5 point system
I put a few sections above in bold lettering. If I am reading this correctly it means I have been responding very well to chemo. It was such a relief to read this. The thought of not responding to chemo and having to start over with a new chemotherapy regiment with a whole different possible set of side-effects was stressing me out. Actually part of me hopes this means I won’t have to do all eight rounds of chemo. Currently I am scheduled to have six to eight rounds of chemo. I’m hoping my response to chemo means I will be able to stop at six rounds. But that will be up to the doctor to determine. Either way I’m happy with what I read.
There are still some trouble areas in my report. But the main area of concern was noted by the imaging doctor as “likely benign”. Also I seem to have developed sinusitis since my last PET scan. I’ll talk to my oncologist about these results tomorrow and see if there is anything that has to be done. Right now I really can’t say I’m worried about them at all.
I am also looking forward to actually seeing my whole scan tomorrow. The online chart does not give me access to see the scan, only the results of the doctor that reviewed the scan. The first scan reminded me of a large fireworks display, hopefully this time it looks more like kiddie fireworks. Plus I know it will relieve a lot of stress from my wife if she is able to see the cancer receding.
Tomorrow I have round four of chemo. I’ll probably do a post prior to my doctor appointment and receiving chemo because I am usually to tired to do any post afterwards (that shot of Benadryl really puts you under). That means it will likely be Wednesday or Thursday before I post about seeing my actual PET scan. Hopefully it looks as good as I think it will!
On Wednesday of this week I had my second PET scan done. I didn’t blog about it at the time because I was feeling somewhat under the weather due to fall allergies. In this post I will share how this experience went and some of the scanxiety this has caused me.
My first PET scan was done about two months ago. At the time I just got my biopsy result and found out for sure I had cancer. Leading up to that first PET scan I had a lot of anxiety, also known as scanxiety. This time I don’t recall having any scanxiety prior to the PET scan, but now that I have to wait for the results I definitely am being impacted by scanxiety.
Before going into the scanxiety let me back up and share my PET scan experience this time. Two days leading up to the PET scan I was on a high protein diet. About 45 minutes prior to the scan I was injected with a glucose solution that contains radioactive material. It is because of this radioactive material that most people will not want to have a PET scan done unless absolutely necessary. Interesting side-note. The tech said the actual injection solution was made down south (I believe in Omaha) and is shipped to Sioux Falls. In Sioux Falls the solution is put into the doses needed for that day and couriered to where it is needed, in this case three hours away in Aberdeen. I believe he said the half-life of the radiation in the solution is 110 minutes. This solution travels quite a bit just to be used in these PET scans. Oops, time to get back on track and focus on the PET scan.
I was on the PET scan bed for just over a half-hour, but the scan itself only lasted for about 25 minutes. My scan went from about half-way down the head to my thighs. Since I am so tall (6’3″) my scan takes longer than people of a normal height. I actually kind of enjoyed the scan for the first half. The bed/table shape feels good on the back and a wedge is used to allow the knees to be bent. About halfway through the scan though my left knee locked up and was in pain for the rest of the day. This might be due to an old injury, or maybe due other factors. It is hard to say.
After the scan my wife and I went out to eat. My scan was in the afternoon and I had been fasting all day for the scan and I was hungry as heck. By the way, mid-afternoon is a great time to go out to eat if you are a chemo patient. We basically had the restaurant (Ruby Tuesdays) to ourselves. I didn’t wear a mask and it felt good to be going out.
The last time I had a scan we saw the results shortly afterwards during an appointment with the oncologist. That was when I first saw the fireworks. Now this time I have to wait almost a week for the results. My next scheduled appointment with the oncologist is next Tuesday during my fourth round of chemo. I didn’t think waiting for the results would impact me, but the waiting is definitely causing me some anxiety. This PET scan will show if the first three rounds of chemo are actually working. If the chemo isn’t working I’ll likely have to switch to another blend of chemo drugs. Chemo drugs are nasty and can have some horrendous side-effects. I know and can deal with the side-effects of my current chemo regiment, known as R-CHOP. The thought of chancing worse side-effects is actually causing me quite a bit of anxiety.
It of course didn’t help that both my wife and I saw a preview of the scan. From our untrained eyes the scan does not look any better than it did two months ago. Actually it appears there may be a new bright spot. Wondering if my cancer has spread or has changed from a grade 2 lymphoma into a grade 3 lymphoma is definitely causing me some stress.
Between now and Tuesday I am trying to keep my mind occupied in the hopes to keep my scanxiety down. So far it isn’t working very well and my anxiety seems to increase each day. Hopefully on Tuesday the Oncologist will let us know the chemo is working as planned and I can continue my R-CHOP regiment to push this lymphoma cancer into remission.
Earlier this week I noted there wouldn’t be any real post that day due to not feeling very well and my brain fog being too thick. For the last few days it has been hard to put thoughts together and breathing has been very hard. Luckily today I seem to be back to normal and believe it was in fact fall allergies which took me down for the last few days.
One thing I love about our home is that we have a lot of old trees surrounding the house. Of course that also means a lot of leaves. Sunday of this week was a very nice day. It was slightly cool, but there was no wind at all. This was perfect for one last time to clean the leaves in the yard. I spent a few hours in the afternoon with my leaf-blower and hauled a full pickup load of leaves to the dump site. Not only did I feel that something was accomplished by removing all the leaves, I also got some good exercise in.
It didn’t occur to me at the time to worry about my fall allergies. I am already taking Claritin every day. I partially take Claritin to combat fall allergies; and partially to combat the side-effects of certain drugs I am taking; more specifically Claritin helps battle the side-effects of Neulasta and Xgeva. Even though Claritin does a fine job of keeping fall allergies at bay, it does have its limits. I apparently found those limits by using a leaf blower to shoot a lot of allergens into the air.
I didn’t exactly have my normal fall allergy symptoms. Typically during fall I get a runny nose, my sinuses feel plugged, and my head feels like it is going to explode. This time I had a little bit of a runny nose, but I don’t believe my sinuses were clogged at all. My head didn’t feel like it was going to explode either. Instead I had a harder time breathing and I just felt “off”. Additionally my brain fog seemed to really get thick. I just couldn’t put any thoughts together at all. Finally today, four days later, I feel almost back to normal (well the new normal for me being on chemo).
This morning I was in contact with another cancer patient going through chemo. She has a similar experience when doing yard work. To combat this she has to take a shower immediately after doing any yard work and ensure she doesn’t come in contact with the clothes she was wearing again until after they have been washed. Additionally if she has done something like raking she will put the blue mask on. That day I did not take a shower until the evening. Now I know to do that right away.
Now that there is a light layer of snow on the ground hopefully fall allergies won’t be an issue. Furthermore, if my treatments go right I hopefully won’t be on chemo come spring when I have to worry about allergies again. Either way I now know my body definitely reacts differently to fall allergies than it used to. I guess it’s just one more thing to watch out for while on chemo.
I’ve been trying to keep on a Monday thru Friday schedule for this blog. Today this just isn’t going to happen. For the last two days I have been feeling under the weather. As a consequence my brain fog seems thicker than normal. Putting words into a sentence is just too hard today. Hopefully things will be back tomorrow.
Since I did a post about lymph nodes yesterday, I thought it would be appropriate to post videos about the lymphatic system for multimedia Friday.
This first video is a comes from a Dr Eric Berg. He does a great job of explaining the lymphatic system to those of us without medical degrees. This video is about five and a half minutes.
This next video is just under two minutes and focuses in on what causes lymph nodes to swell.
This next video is actually meant for medical students, but I think it is interesting. In this video an instructor is showing where a doctor checks the head and neck lymph nodes during a medical examination.
Finally here is a video of a doctor examining a kid. The kid happens to have some swollen lymph nodes. It was interesting for me to see this video because the lymph nodes this kid has swollen happens to be the lymph nodes I first noticed to discover I had cancer. The main different between this kids swollen lymph nodes and mine is that my lymph nodes did not have any pain and they were very hard; whereas this kid had some pain in the lymph node and it was squishy.
Here is the old Schoolhouse Rock video called The Body Machine. Hopefully I’m not the only one that remembers and grew up with these great videos. This video really doesn’t have to do with lymph nodes, I just happened to run across it when looking for lymph node videos.