Lymphoma is a real cancer

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The lymphatic system runs throughout the whole body. It is very real!

I have cancer, hence why I am writing this blog. My actual diagnosis is Grade 2 Follicular Lymphoma, a type of non-Hodkin’s lymphoma. Even before I knew what all of that meant I thought it sounded bad. Over the last couple of months I’ve come to find out that some other people don’t think it sounds as bad as it is. I will expand upon that in this post.

I should mention the origins of this post actually came about due a support-group conference call I was on earlier this afternoon. A group from Illinois invited me to attend their teleconference and speak about my experiences blogging. I enjoyed the chance to interact with other cancer patients and hear other stories. One topic that came up during this teleconference was dealing with people who perceive blood cancers, especially lymphoma, as a “fake cancer”. This wasn’t the first time I’ve heard the term. Actually it comes up a lot in various support groups. Blood cancer patients, again especially lymphoma patients, are often treated differently from other cancer patients. It is an odd occurrence I probably would not have believed if I hadn’t seen it first hand.

One of the problems I believe is that the average person simply cannot relate to lymphoma. Lymphoma is categorized as a blood cancer, but it is the actual lymphatic system which is infected with cancer. How many people (other than doctors) actually know what the lymphatic system is or what it does? I’ve come to find out very few people do. When people think of cancer they think of breasts, lungs, prostates, or some part of the body that can be identified. I’ve had people give me blank stares when I told them I had multiple lymph nodes which had become swollen due to cancer. Actually more than once I’ve had people say “oh you have one of the good cancers” when I try to explain my condition. Every time that leaves me silent. I still haven’t come up with a good response to that. But I remember most people really don’t know what the lymphatic system is and they really don’t know how to relate.

Another problem is that most lymphoma patients, including myself, usually look pretty good. Even after four rounds of chemotherapy I have had multiple people tell me I look great. All of my pain and scars are on the inside. There aren’t any scars or physical signs advertising the fact that I have anything major going on with my body. Actually in my case I probably look better than I did prior to starting chemo due to the lymph node that was restricting my breathing. Now that I can breathe again I’ve been told my color looks better than it has in months. Unless I tell people that every bone in my body hurts, especially my shoulders and lower back, they don’t realize I even have any pain. I do a good job of trying to hide that pain.

I have found a way to get more people to understand I have a “bad” cancer. All I have to do is say the cancer has spread to my bones, which it has. Actually that is probably what is causing most of my pain. As soon as I tell people the cancer has moved into my bones they will say something like “oh my gosh, I’m sorry” or “oh wow, you really do have a serious cancer”. Like I mentioned above people need something to relate to, and bones are definitely something people have heard of.

Don’t get me wrong, I am not writing this post to complain. I do think my situation could be a lot worse. But I think it is important to let other lymphoma patients know they are not alone in how their diagnosis is perceived by some people. I really don’t think any of the people acting as if lymphoma is a lesser cancer are trying to downplay the cancer. Instead I think they have problems relating to the type of cancer we have so instinctively assume or hope it is better than other more well-known types of cancer.

Friends and family playlist

109192289It is multimedia Friday time on DadAgainstCancer! Since I wrote a post yesterday about giving thanks for my friends and family I thought an accompanying playlist would be in order. Actually one of the songs in this playlist made my Dealing with Cancer Playlist a month ago. Hopefully these songs will help others understand how important family and friends are!

Joe Cocker – With A Little Help From My Friends

This is the song that actually made my last playlist as a bonus song. For this playlist I decided to share the Woodstock version of the song. I really wish I could have been there! Of course the fact this concert happened a few years before I was born kind of killed my chances of making that great venue. When I’m feeling down I really love to crank the Joe Cocker version of With a Little Help From My Friends and my head often clears up. (and yes I’m a Beatles fan, but Cocker took a great song and made it epic!)

Queen – You’re My Best Friend

This song is what goes through my head when I think about my wonderful wife. I can’t imagine going through my cancer diagnosis and treatment without her.

Ooh you make me live
Whatever this world can give to me
It’s you you’re all I see
Ooh you make me live now honey
Ooh you make me live

Randy Newman – You Got A Friend In Me

“Stick together, we can see it through”. What great lyrics! This a live version of the song, not the version from Toy Story.

Bill Withers – Lean On Me

This is the original Bill Withers version, and not the Club Nouveau version I often hear on the radio. Actually there are a lot of good lessons in this song. I have to remember the following lyrics when I need to reach out for help.

Please swallow your pride
If I have things you need to borrow
For no one can fill those of your needs
That you won’t let show

Montgomery Gentry – My Town

This is a song that comes to mind when I think of how great my neighbors have been. I may not have grown up where I currently live, but I get the same feeling as this song describes when I think of how supportive my neighbors have been.

The Animals – Don’t Let Me Be Misunderstood

This song actually comes to mind after I have some steroid rage from the Prednisone.

Oh, oh, oh, baby – don’t you know I’m human
I have thoughts like any other one
Sometimes I find myself, Lord, regretting
Some foolish thing, some little simple thing I’ve done

Hank Williams Jr – Family Tradition

I think of this song when I think of how different yet almost the same I am as my parents…

 

Giving Thanks

19919789It is Thanksgiving today in the United States. Despite my diagnosis of non-Hodgkin’s lymphoma and going through chemotherapy treatments I feel there is a lot to be thankful for. Wait, make that because of what I am going through with cancer I know I have a lot to be thankful for. Going through cancer has made me appreciate just how good the world is and how great the people in it can be.

First I am thankful for my great neighbors. I have multiple neighbors who have offered to help around the house, have brought meals over, and a multitude of other things. I am truly thankful for these wonderful neighbors. Plus I think it has given my wife peace of mind knowing that as I sit at home recovering from chemo that any number of neighbors are a short call away in case she is unable to get a hold of me for some reason. Having good neighbors really reduces the stress on her.

Next up is friends and acquaintances. Sometimes in life it feels like I don’t really have a lot of friends. I’m sure a lot of other parents can relate to the fact that it is hard to have a lot of friendships when you are constantly traveling for kids sporting and school events. During times like this when I have cancer I found out how many people are willing to step forward and offer help. So many people have offered to help that I actually lost track. Even though I have not taken most of them up on their offer to help, I truly appreciate the fact they made the effort to help me and my family during this time.

Family has always been important to me, even if I never let them know. Both my family and my wife’s family have gone above and beyond to help us get through my cancer treatments. My wonderful mother-in-law has brought me meals while I do my chemo treatments and a brother-in-law has been there for me twice during chemo when my wife was unable to be there. My brothers and parents have helped just by being themselves and supporting me. I am truly blessed with family.

I am also thankful for the greatest wife in the world to help me get through my cancer treatments. Mindy is truly my soulmate and I don’t think I would be as mentally strong through this experience without her support. I only wish I could do something to reduce the stress on her. She really deserves a break.

Finally I am thankful for my boys. With my being on chemo the boys have had to put up with some major changes. They have handled these changes better than I believe many adults would. The boys have also stepped up to help me when they think I am overdoing it. My wife and I are truly blessed with great children.

To anyone reading this I would ask for you to think of those in your life you are thankful for. It is easy to get depressed or overwhelmed when going through cancer and/or chemotherapy. Instead of focusing on the negative aspects of cancer, I would urge everyone to stay positive and focus on people who are there to support you.

The ups and downs of Prednisone during chemo

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Steroid Rage!

Chemo is hard on the mind and body. That almost goes without saying. But it isn’t just the chemo drugs that wreak havoc, some of the other drugs taken by chemo patients can have some major side-effects. In this post I will write about one of those drugs: Prednisone.

 

I am on a chemo regiment called R-CHOP. The “P” in R-CHOP stands for Prednisone, a type of steroid typically used for its anti-inflammatory properties. As part of R-CHOP Prednisone is actually used because it can “stimulate programmed cell death” in some cancer cell types. During the beginning of each three-week chemo cycle I take 100mg of Prednisone each day for five days. Since it is not an actual chemo drug, I really didn’t think it had any side-effects I would have to watch out for. Boy was I wrong.

When I first began chemo I noted Prednisone made me very hungry. This is still very much true. Unlike many chemo patients I have not lost any weight since starting treatment. Actually I am almost twenty pounds up since I first began chemo. The constant hunger during the week I am on Prednisone is basically insatiable. I won’t really complain about this side-effect too much. Recently I have found through smart diet and getting exercise I can counter-act the weight gain. After I’m done with chemo (and Prednisone) I’ll worry about losing those pounds I gained.

A side-effect of Prednisone I will complain about however is the mood swings. One moment I will be watching a movie and almost in tears because a character in said movie died, and the next moment I will feel great rage because my boys are fighting about nothing again. When I feel that great rage I have been trying to walk away. The boys are brothers, and they are going to fight. My yelling at them in a steroid rage is not going to do any good at all. It is hard to walk away though. When I get this great rage it feels like I have to let it out. Shortly thereafter I will find myself going to the boys and apologizing. They don’t know why I’m apologizing, other than the fact I’ve told them some of the drugs I am on for chemo can make me act strange. The wife and kids have been great about putting up with the mood swings during chemo week. Hopefully they will continue to understand and be patient for the next couple of treatment cycles.

While the mood swings from being on Prednisone is bad, it’s the withdrawals from the steroid that really gets to me. On Sunday of this week I finished my fourth cycle of Prednisone. During the days I am on Prednisone I actually feel pretty dang good (except for the mood swings). However the couple of days after no longer taking Prednisone I crash hard. The day after I start to feel weak with aches and pains cropping up all over my body. This gets worse for about two days. Yesterday, Tuesday, I felt so weak and sore that all I wanted to do was curl up in a ball and ignore the world. I don’t know if these symptoms are truly from withdrawal. It could be that the anti-inflammatory properties of Prednisone hide the aches and pains while I am taking the drug. Either way I feel like I’ve been hit by a truck for a couple of days after I’m done with the Prednisone.

I’ve spoken with other chemo patients who have similar experiences after coming off Prednisone. One person I spoke with had their oncologist prescribe something to taper down the withdrawal. I don’t really think this is necessary for me. Hopefully I only have two cycles of chemo left and feel I can cope with these symptoms now that I know about them.

One of the chemo patients I’ve spoken with also noted she experiences depression for a couple of days after coming down from Prednisone. I don’t think I experienced depression, but its hard to know. I definitely feel emotionally “down” after coming off Prednisone. If that counts as depression it is hard to say. This down feeling goes away after a couple of days. In fact today, Wednesday, I feel pretty upbeat and the emotional side-effects of Prednisone appear to be gone.

With only a couple of rounds of chemo left I won’t worry too much about the side-effects of Prednisone. I mostly shared my Prednisone experience in this post so other chemo patients suffering side-effects from the steroid know they are not alone. It is also my hope that friends and family of chemo patients suffering side-effects from Prednisone will get an understanding of what those patients are going through.

A special Monday song

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.

Multimedia Friday: the PET scan

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.

The status of using CBD for SD cancer patients

578184Recently 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:

  1. Section 1 of the bill made the following change to the definition of marijuana in SDCL 34-20B-1. The parts striken through are 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.

  2. 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:

  1. SB 95 removed CBD from the definition of marijuana.
  2. SB 95 added cannabidiol to the list of Schedule 4 drugs in South Dakota.
  3. 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.

The second PET scan looked good!

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Kicking the cancer into remission means being able to spend more time with my boys and I am better able to take care of Ashton on the days he cannot walk!

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!

R-CHOP, the chemo regiment I’m on

21746916A 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:

  • Rituximab
  • Cyclophosphamide
  • Doxorubicin (Hydroxydaunomycin)
  • Vincristine (Oncovin)
  • Prednisone

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

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

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 (Hydroxydaunomycin)

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 (Oncovin)

Vincristine is the third and final chemo drug in the R-CHOP regiment. It is also given through an IV.

Prednisone

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.

PET Scan results posted and they look good

Doctor thinks the computerLast 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:

IMPRESSION:
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!