Tag: chemo

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Plus 23

Jothi

Hello, I finally feel like writing again. I’m at +23 on my stem cell transplant today. It has been an interesting past month to say the least. I’m still in recovery mode, and I’m told I will be this way for a few months at least.

The doctor told me that I did better than most. The end result is all that matters though, how much cancer is left or not left. I would rather be more miserable for longer and have a better response. I won’t know that answer for a few more months. I’m praying for MRD negative test result (zero cancer cells in a million).

I did get an engraftment fever, which wasn’t a surprise to me, since fevers are kind of my thing and I usually get them when I’m sick. Fortunately, I was able to stay out of the hospital from that.

Where my picc line went into my arm, that started to bleed one day, which was alarming because my platelets were so low. They put a plastic dressing over the line to hold it in place and keep germs out. It filled up with blood and I had a sack of blood hanging from my bicep. Fortunately, my measly number of platelets stopped the bleeding and the dressing just got changed.

The nausea was pretty challenging. Not surprising, since the chemo heftily kills off GI tract cells as well. I was only able to eat a third of what I normally eat, and that was forcing myself to eat. I managed it with ginger tea and drugs. I was told I could drink fresh vegetable juice if I made it myself (which I do anyhow). I feel like that helped my nutrition immensely, and kept my remaining blood cells alive and kept me away from transfusion.

I engrafted (my blood started growing again) on day +10. To my surprise, I was told I could go home on day +13 (I had to move into hospital apartments across the street from the ER, since I lived outside the “safe zone”). I didn’t need a red blood transfusion and I only needed one platelet transfusion.

My hair fell out as expected. I wear a beanie to keep my head warm. When I look into the mirror, I think I look like Toad from Mario brothers. Oh well, good thing it’s not permanent.

There was a park that was in walking range of the Stanford apartment that we walked to every day. There were some amazing oak trees there. Their branches went out horizontally for 20-30 feet from the trunk. I was amazed they didn’t snap off. Oak wood sure is hard.

One of the oak trees. I had a friend tell me I look like a ninja all covered up 😜.

I’m pretty tired all the time. Go to bed tired. Wake up tired. Tired from doing the smallest things. It’s getting old already. I’m the type of person who does things pretty constantly. I have a whole list of things I’m not allowed to do (due to germ, bacteria and mold risks), and it’s hard to get inspired to do things from what I am allowed to do. I don’t golf, but I’m not allowed to golf for 6 months, I think that one is pretty weird 🤪.

I got the picc line pulled out a few days ago, and today I’m allowed to use my right arm again. Even though I’m tired, I’m really looking forward to exercising again. I have been keeping up on my walking, about a mile every day. Call me crazy, but I did an almost 4-mile flattish hike the other day. I really needed to get out into nature. It makes me feel alive and quite frankly, sometimes I feel half dead these days at times.

Well I’m off to the exercise bike, hopefully I don’t collapse from it 🥴. Again, the only way is forward and I’ll keep on trucking….

Eat your vegetables!

It’s California poppy season and boy are they ever blooming after all the winter rain.
Blog, How To

Tips For Radiation Therapy

Jothi

(And I suppose they mostly work for chemotherapy and life in general.)

It’s one of my goals to write more practical every day posts and I have a bunch of them in my head. Here is the start of hopefully a good long line of helpful things for people going through it.

I had 10 days of radiation treatment to my pelvis and sacrum area, years ago. There are drug options for side effects, but I always prefer to do it naturally as much as possible, since they generally don’t have additional negative side effects. Here are some (hopefully) helpful tips.

Constipation:

When I think of unusual constipation, the first thing I think of is psyllium husks. Nothing but 100% pure fiber. (I use Anthony’s organic psyllium husk, from Amazon) Mix 1-2 tablespoons with a full glass of warm water, stir and drink it down. Usually within a few hours, your symptom will be relieved. You can use a tablespoon of psyllium husks with a glass of water daily if you know you’re going to be challenged.

You can combat normal constipation by just drinking enough fluids a day. I personally start my day by drinking 24oz of water and rub my kidneys. I’m always shocked to hear how little some people drink through the day. Your pee color will tell you if you are drinking enough. If it’s not light yellow or clear, DRINK MORE!

Diarrhea:

Try the BRAT diet, which stands for bananas, rice, apple and toast. I definitely had some bowls of brown rice and bananas when my intestines were getting hit by radiation on the way to my bones. Coconut oil or shredded coconut can also help take care of diarrhea.

Coconut oil or ghee topically can help tremendously with a sore butt from all the trips to the bathroom.

Dehydration:

The World Health Organization fluid replacement electrolyte solution is 1/2 tsp of salt, 3/4 tsp baking soda, a cup of fruit juice, mixed with 1 liter of water.

Obviously water is also important to drink and mineral water is also helpful (especially if your stomach is queasy).

Dehydration will happen from either the diarrhea or vomiting. Make sure to stay on top of your hydration! Try to drink a 8oz cup, per trip to the bathroom (diarrhea). Don’t start replenishing fluids from throwing up until you can keep them down.

Fatigue:

Exercise exercise exercise. It’s hard to get up and move your body sometimes, but it does help out tremendously. Keep in mind that you are going through a lot and not to push too hard or too fast. Just walking every day can be helpful. Give yourself permission to rest and get some help when you need it.

Dry skin/burns:

I’ll start with, Do Not put oil or lotion on your skin in areas that are actively being radiated! What until your treatment is complete. Oil with radiation will cook your skin and burn you, Kentucky fried human.

Make sure to be your own advocate for shielding your other body parts that don’t need to be radiated. It doesn’t hurt to make sure you get the best care/protection possible.

I used coconut oil and Vitamin E on my skin. You can just get Vitamin E capsules and break them open. Vitamin A cream is also supposed to be very helpful (I haven’t tried it though). It definitely took awhile for my skin to recover fully. Keep at it.

Blood counts:

As you know by now, I’m huge on nutritional diet. Vegetables can have an amazing effect on the quality of building blocks your body uses. Fresh vegetable juice gives you a large quantity of vegetables in a less filling application. Juice carrot, beet, green apple, ginger, turmeric, greens, celery, pomegranate and sprouts. Any combination works. Vegetable juice can also rejuvenate and cleanse your organs and combat constipation. Feed your blood!

Nausea:

I use ginger for this. I cook with it, I make tea with it. I put it in my vegetable juice. It works super well for me. Try have some ginger tea. Take 1/2-1 tsp of ginger powder and boiling water and pour it into a cup. Stir it a little while you wait for it to cool and that’s it. You can also take fresh ginger, cut it up into pieces and put it into a pot and bring to a boil. Either work. Try it.

Eating bland food or dry food can also be helpful. Not all nausea is the same, sometimes you just have to experiment with it.

Other things:

It is said outside of conventional medicine that a low glycemic diet while undergoing radiation therapy can make a huge difference in effectiveness. If you’re going to do it, you might as well try and make it as effective as possible. Sugar increases growth factor IGF-1, which suppresses cancer cell death. You have nothing to lose and everything to gain by trying it, why wouldn’t you?

Again outside of conventional medicine, Ashwagandha. Ashwagandha is said to make cancer cells more sensitive to radiation and protect healthy cells. You do have to take ashwagandha with at least 5% withanolides. There is a lot of ashwagandha out there, withanolides are the active compounds of ashwagandha. It’s not worth taking without the 5%. I did not use it while I did radiation, only because I didn’t know about it. Ask your doctor and make your own decision. I have taken lots of ashwagandha at different times in the past years. It does help calm and can help you sleep. It had no negative effect on the chemo I was taking.

Best of Luck!

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Gnomes!!!

Jothi

Have you ever seen the children’s movie: Chicken run? Made by Nick Park, the same guy who did Wallace and Gromit. I think the guy is pretty clever and witty, so I liked his shows a lot.

Anyhow the old guy, in Chicken run is being fooled by the chickens and he says “Gnomes”, thinking gnomes are causing the trouble. I still think of that when I hear “Gnomes!”.

Some gnome houses sprouted up overnight in the garden.

It’s amazing how fast mushrooms grow. 

I feel if there ever was a universal cure for cancer, it would come from mushrooms! 

I do eat mushrooms, almost daily. I wouldn’t eat these ones though, being mostly mushroom ignorant. I also take reishi daily for the potential anti myeloma effect.

If you ever wanted to watch an awesome show (I think so anyhow), watch Fantastic Fungi (Netflix has it). They have some amazing time lapse clips and interesting mushroom information.

I haven’t felt like posting for a little while. Mostly been uninspired. I guess I did start one post, that I’m actually really excited about: Death. (Excited about the post, not death 😜).

I’ve been really enjoying writing it and I really hope it is helpful and makes you go “hmm”. It’s been kicking around in my head for months and I’ve been itching to write it. It’s an really important one for me, so I don’t want to flub it.

It was infusion day for me today. They had me take 40mgs of Dex (steroid) on top of the chemo. Dex at this strength, makes my lower back ache like crazy. It’s going to be awesome, can’t sleep and a achy back 👍🏻😝. Really, “everything is awesome”, (woah, Lego movie, I guess I have shows pouring out of my head).

Cheers and Eat your Vegetables!

Blog, Nutrition

My Strategy

Jothi

One of things that is a challenge for me with myeloma is that it is generally an older person cancer and most of the data out there is based on someone much older than I am. The median age for myeloma is 66-70. Only recently has it been showing up in younger people.

I’ll confess that I’m a bit of a data/numbers/stats person. How do I know if a certain set of data points are the way they are because it’s just myeloma or it’s because it’s off of someone who’s 70? The answer is, I don’t.

Most of the oncologists I’ve talked to like to say, “You’re young, you can take it”. Umm gee thanks, I get extra drug abuse because I’m young and can take it???? It’s a fine line between dying of myeloma and dying from drugs meant to kill myeloma. I like to keep that in mind.

The 5 year survival rate for myeloma is about 40%. Obviously, like most people, I want to be on the side of the 40% that is still alive. I want to be a myeloma person who is still alive in 10 years, 15 years, 25 years. 

What’s my strategy to achieve that? A strategy that I believe can help a person who is any age.

By doing what is good for my body, down to the cellular level and bad for cancer. It’s funny how things that are really good for us are also good at getting rid of cancer cells (and other chronic illnesses, I might add).

The biggest foundational piece to health is diet. Without a healthy diet, as the first building block, it’s hard to have success with anything else. Everything builds off of food and drink. It’s easy for me to point to having a poor diet as part of the reason I’m in this mess to begin with.

Feed your body nutritional food that is GOOD for you and don’t feed yourself food that is good for cancer growth. It’s just common sense if you think about it.

NF-KB is the primary pathway for growth in Myeloma, regulating inflammation and immune responses. Doesn’t it just make good practical sense to eat an anti inflammatory diet as to not give myeloma what it needs to grow. We know sugar, dairy, highly processed foods, meat and alcohol are inflammatory for the body and feed cancer cells.

1. I choose an anti inflammatory diet that is plant based whole food which is anti cancer. Food that is full of life/prana/qi and not something that expires 6 months from now.

Some people call a whole food diet, full of vegetables and fruits, legumes, healthy grains and healthy fats extreme. If you stop and think about it, I eat the same way as my great grandparents did and every generation before them. Does that sound extreme? If you had a time machine and went back in time to the 1800’s and asked someone if they have an extreme diet, they would look at you like you were crazy. In fact, I eat better then my great grandparents, because I have access to so much more variety. Only ignorance holds people back.

2. Next, I make sure that I drink purified water. You only have to glance at the news to read about stories of toxic water in whole towns (Flint MI, South Shore KY etc.) that is undrinkable. The local governments come out and say “my bad”, leaving you to deal with the fallout. I use a RO water filter currently. We have pretty good water here in California, but when we change the filters, they are really disgusting. Filter your water!

3. There are basically two thoughts of dealing with cancer, killing it with chemotherapy, surgery or radiation or to block it metabolically (starve it). Metabolically makes the most sense to me, since cancer cells are just your cells gone wrong and I can’t kill my blood without killing myself effectively. Truthfully, I’ve been hammering away at this metabolically and I haven’t been able to get the results I want. The best I got the oncologist to say is “Your myeloma isn’t behaving as expected. You are a high risk patient who is behaving like a standard risk patient”.

I’m currently mixing both worlds of chemo and metabolic blocking. I do take supplements such as Curcumin, Reishi, D3/K2 among other things that inhibit myeloma growth (they inhibit other cancers as well).

4. “Sitting is the new smoking”, they say. Move your body! I stay active everyday, walking, hiking, gardening, bike riding and Qigong. Some say cancer is cause by stagnation of the body, in areas that lack oxygen. Exercise has lots of benefits such as increased oxygen, blood flow (looking at you revlimid non-blood clots), increased heart rate, plus it can get you out of your own head!

5. Speaking of heads, I’m pretty sure I suffered some sort of ptsd with the cancer diagnosis. I took me a couple of years working through stuff to overcome it. It was a big growth experience for me. Getting out raw emotions, breathing techniques and meditation is what worked for me. I still keep up with pranayama and meditation daily for upkeep.

I have had plenty of seemingly one sided conversations with God. One of the things that I’ve gotten back is, an overwhelming sense that I’m meant to go through this (for reasons that are still a mystery to me), so that is very reassuring for me.

6. Detoxing. I’ve spent a significant amount of time working on detoxing my body (and mind). I done detoxing methods from naturopath methods and I’ve gone to India twice for a major full body detox called Panchakarma, which is a month long process each time. I’ve definitely had some raunchy stuff come out of me. Of course we live in a toxic world and I’m continually having toxins come in no matter how much I avoid it. I use diet and infrared sauna to keep on moving things out that aren’t supposed to be there.

To sum up my strategy, I do what is good for me and bad for cancer. Using chemo when I need it (trying to stay away from it as much as possible). Keep moving and living. Hit the myeloma with certain supplements. Keep working on my head and remembering why I want to keep living.

Eat Your Vegetables!

Blog

Megamind

Jothi

About 4 days after my start of the Dara/Pom/Dex regiment started I woke up in the morning feeling awful. Of course that was to be expected having just started chemo again.

I stumbled into the bathroom to wash my face because I thought I had a large amount of sleep in my eyes. Wash wash wash…..hmm this doesn’t seem to be helping. I turned off the water and looked in the mirror to see my head swollen. Oh, what fun! I can’t blink proper because my eyes are swollen.

We called up the infusion center because a swollen head was not on the list of side effects. They said they would talk it over with the pharmacy and get back to me. They called back a short while later and said “we can’t find a swollen head a reaction to any of the drugs”.

I always find it reassuring when the people who are giving you these drugs say “gee, I dunno”. They have me taking zyrtec prior to the Dara injections to stop a allergic reaction. “Just keep taking the zyrtec daily and hope it helps”. Well, it did end up helping (I think), either that or the drugs wore off. My head doesn’t swell anymore, but my face still gets red and puffy one a week. Clearly a reaction to the dex.

I was eating breakfast that morning and I told my kids I should shave my head and dye my skin blue because I feel like Megamind. They agreed it would be a good idea.

What do you think?

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Labs 08/18/22

Jothi

Here is my last set of labs. I back dated the labs a bit just to show the trend. Looks like Dara/Pom/Dex is having a good effect for me. 8/18 test is after one cycle. 7/15 is my baseline.

I was thinking things were working a few weeks earlier, because my monocytes were way above normal range on the weekly blood tests. Monocytes are basically your body’s garbage trucks. So I have a large amount of dead cells needing to be processed, I was just hoping they were dead myeloma cells and not too many healthy cells. I still have a ways to go. I wonder how long it will take to get the light chains/M band punched back down?

Kidney’s and Liver still working well, High five!

Standard range6/17/227/15/228/18/22
KAPP/LAMB FR 0.26 – 1.650.050.040.06
KAPPA LIGHT CHAIN FREE 3.30 – 19.40 mg/L7.165.706.71
LAMBDA LIGHT CHAIN FREE, SERPL 5.71 – 26.30 mg/L135.98142.52117.49
Name Standard range6/17/227/15/228/18/22
M-BAND-1 <=0.0 g/dL1.31.41.0
SPEP INTERPRETATIONSEE ABNSEE ABNSEE ABN
Name Standard range8/5/228/12/228/18/22
HCT 39.0 – 51.0 %34.536.336.8
HGB 13.0 – 17.0 g/dL12.413.313.6
MCV 80 – 100 fL929291
NRBC <=0 /100WC000
PLT 140 – 400 K/uL119117137
RBC’S 4.10 – 5.70 M/uL3.763.934.03
RDW, RBC 12.0 – 16.5 %12.812.912.6
WBC 3.7 – 11.1 K/uL3.93.14.2

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The First Post

Jothi

Well, where to start? My name is Jothi (pronounced Joe-T). I’m married for 20+ years at this point, and we have 4 children aged 12-19. I am a big nature person. I love spending time outdoors, gardening, hiking, going to the beach, exploring. I am also a huge gamer. Games of any type, board games, sports (both playing and watching) and occasional video games.

People who I would like to sit down and have a long conversation with are in no particular order: Dalai Lama, Barack Obama, Warren Buffett, Anita Moorjani, Neil McKinney, Shin Terayama, Ryan Reynolds, Michael Jordan, John Stewart, Helen Jane Long and Steve Kerr.

For my myeloma family out there, I have Lambda Light chain myeloma. Which means I have too many lambda light chains that make up my blood for everyone else. I have the 14;16 translocation in my myeloma genetics, which basically means my myeloma is smarter than standard myeloma and is good at side stepping drugs.

I had 2 lesions when I was diagnosed, one on my 7 rib on my right side and a bigger one on the right side of my sacrum. Sometimes, I think about tumor placement in the body, and while there are worse spots than the sacrum, the sacrum is a terrible spot to have a tumor! I don’t recommend it. That’s the spot where your spinal cord fans out in a fantastic web of nerves. To this day, it’s like a little bird sitting on my shoulder poking me, saying, cancer, cancer, cancer.

I have had radiation on my sacrum and I went through the VRD chemo protocol (Velcade, Dex and revlimid). I elected not to do the stem cell transplant at that time. My lambda light chains at the high point were 470 and my Kapp/Lamb Fr was .01. M-band was 1.4.

About a month ago I started on Dara sq, Pom and Dex. As of last blood draw, my Lambda light chains are 142.52 Kappa Light chains 5.70 and KAPP/LAMB FR is .04. My M-band is 1.4. These numbers are after being off of all Chemo for over 6 months after I had a go with covid and saw that the chemo wasn’t doing anything anyhow.

I’ve had 2 pet scans this year, with the most recent in July. Both have come back showing no cancer activity.

I have become very passionate of diet, nutrition and what actual food is along my brief journey. When I was struggling for a website name, my kids suggested: Eatyourvegetablesdotcom, but it was already taken. But it is definitely my motto.

That’s the gritty numbers post with the information download. I hope my future posts will be a bit more fun and entertaining.

EAT YOUR VEGETABLES!!!