Mario on Cometriq

[Olga]

Hi Mario, I am super glad to hear that cometriq works for you, and hoping that the side effects are not that bad either,
Olga.

[D.ap]

Hi Mario

Great to hear..stabile!
I hope you are working to get your weight up or at least stable as well. Coconut oils and protein powder added to your foods add up to a pound in a weeks time
Then you can moderate from there.
Love
Debbie

[Bonni Hess]

Dear Mario, It is SO good to hear from you with this VERY good, relieving, and encouraging news!! I Hope that you are tolerating the Cometriq side effects well, and I will be anxiously awaiting your next update. In the meantime, take care, celebrate your good scan results, and know that I am celebrating right along with you with greatest joy, happy hugs, healing wishes, love, and continued Hope, Bonni

[cachabamba10]

Hey guys:

Its been a while since I have posted in the forum, I have been taking Cometriq all this time. They lower my dose to 60mg a couple of weeks ago.I have had another chronic weight lost episode again. Lost close to 15 pounds in three months. Right now I am between 128 and 132 pounds, I don't feel good in a 60mg dose of Cometriq, personally I don't think is strong enough but the side effects were pretty bad. I have been stable all this time with no more shrinkage at all. One of the things that I am noticing is how mess up my veins are now, its so hard for me to get a IV in. They just can't find my veins at all,even for just drawing blood its really complicated.

I have also got back pain very bad pain. so,there has been a lot of complications but I am still trying my best. Something that I wanted everyone to know was that apparently there will be a new clinical trial opening in MD Anderson with a combination of two immune therapy. Dr. Benjamin says that I am a prime candidate for this new clinical trial and he wants me in it for sure. Its supposed to open in a month and a half or three months. This is all the info I was able to get from Dr. Benjamin,they are keeping everything very tight lip and I don't know exactly what are the agents they will be using or the criteria for entering the trial or at what stage is the trial in.Please understand that this is all the info I have as soon as I know anything I will try to let u guys know. Dr. Benjamin is supposed to call me as soon as it is open so I can do the testing and all the stuff to get in. I will keep you guys update.

as always take care everyone, live life to the fullest.

your friend;

Mario Arevalo

[Olga]

Thank you for an update. If you are planning to go for the new clinical trial, try:
1. Find the cause of the back pain - if something needs to be done - like surgery or ablation - it has to be done before of entering the trail;
2. Gain weight. Easier said than done in some cases but a conscious effort usually helps at least to some extend - omega-3, protein sport shakes without going into to much carbs - it increases the systemic inflammation.

[cachabamba10]

Dear Olga:

This back pain has been a kind of scary issue because the pain started probably 9 months ago or so and they just have gotten worse. I have had three lower and upper spinal cord MRI's already with a interval of three months on each of them. They have all been clean last two included complete thoracic area. We have found nothing, I also always get my ct of the chest and upper abdomen. and about two weeks ago the pain was bad and I got a couple of xrays done of the lower and upper back and abdominal area and chest area and nothing found either. Its just weird, if you have any ideas as what else we could try doing to be proactive let me know. I am just scare that by the time we find whatever it is, we won't be able to treat it. Dr. Benjamin is very confident that won't be the case. He feels very good about all the scans we have done and the fact they have come back with good results of no mestatasis.

About weight issue is really tough, my taste buds are really mess up and it doesn't help that I get constant diarrhea or nausea all the time. I have a routine down now, I go to sleep at 2 in the morning, take Cometriq at around 3 or 4 in the morning. I wake up each day at around 1 in the afternoon and have a single serving of cereal, then I have a snack at 6 at night. Usually that snack is either a pear or a apple or a single small bag of chips. Then I have my only big meal of the day which is at 7:30pm or 8 at night. Thats it, is my routine, if I change the routine something happens bad usually and I end up having worse diarrhea or nausea. I have tried taking boost plus in the morning at 8 or so,but I just end up throwing it up. I will keep trying though, because the more I loose the more people stare at me as I look like a drug addict or just a very sickly man. Right now they are advocating at MD anderson for me to get a cane because they are saying that if I fall and brake something I might not make it back (

If anyone has any advice please go ahead, I have battle this for a long time. But it doesn't mean I am all knowing so please I am open to any advice.

Concerning brain MRI the last one on February was clean yes super glad about that. Dr. Benjamin wants me to go to once a year Brain MRI but I preferred every six months. We will see what I decide because its due now if I want to do the every 6 months.

Thanks Friends and Olga I hope Ivan keeps getting better.

Mario Arevalo

PS
Olga tell Ivan to check out Bastion or the Wolf Among Us. If he has access to a tablet and wifi they are pretty cool games.

[Olga]

Hi Mario,
you would need to try to eat more often, smaller portions. If you know what food does not cause a diarrhea, just eat it few times a day, and you really need proteins as you lost a lot of muscles. The weight loss like that causes the muscle wasting. Did you test your vit D blood level? You probably spend to little time on a sun with the schedule like this - is your skin tanned? It can help to normalize the appetite and to reduce the inflammation.
Can you remind me what is your general situation overall now - do you have any bigger mets anywhere that can cause the cachexia metabolic syndrome to develop?
Re.pain - might be muscle related, but also you said they did an abdominal CT and MRI for the spinal cord. Do you know if adrenal/pancreas area was visible on MRI's? Was the CT done with the contrast?

[D.ap]

Hi Mario

Has your prior issue of fissures cleared up?
Do you feel like to pain is radiating from your pelvic
area ? I'm sure sorry to hear of the back pain

Here's a good write up on the inflammation Olga was referring to

https://www.mdanderson.org/publications ... -diet.html

foods

Fermented foods such as yogurt, sauerkraut and miso contain probiotics that help reduce inflammation. To get the most health perks, eat at least one small serving of a fermented food each day.

Choose low-fat, plain organic yogurt and kefir.
Try fermented vegetables, such as sauerkraut and kimchi, with a sandwich or salad.
Enjoy a cup of miso soup or kombucha tea.

So you are currently 125?
How tall are you ?
Write when u get a chance
Love
Debbie

[Bonni Hess]

Dear Mario, It is so very good to hear from you after your long concerning absence from the Board and I am so grateful that your disease is still stable on your Cometriq treatment. I am very sorry and share your concern about your undiagnosed and unresolved back pain, but am grateful and relieved that repeated scans don't show any spinal or abdominal mets that could be causing your back pain. Have you had a full body bone scan to rule out any bone mets? I Hope that you will be able to gain some much needed weight. Have you considered/do you use marijuana to help alleviate your nausea and stimulate your appetite? Marijuana has been very effective and successful for Brittany in helping her to maintain her weight. Thank you for the important shared information about the upcoming immunotherapy Clinical Trial at MD Anderson which I will be anxious to hear more about when the information becomes available to you. In the meantime, take care dear Mario, try to gain some weight, keep in touch as you are able, and know how grateful and relieved I am to hear from you, and how very much I appreciate your thoughtful update and shared information. With special hugs, caring thoughts, healing wishes, love, and continued Hope, Bonni

[D.ap]

Hello again Mario

I've been doing some light reading on cometriq

http://www.cancerresearchuk.org/about-c ... rugs#hints

For loss of appetite
Eating several small meals and snacks throughout the day can be easier to manage
If you are worried about losing weight, ask your doctor to recommend high calorie drinks that you can sip between chemotherapy treatments
There aren't any rules about what you should and shouldn't eat – just do what works for you and if you feel like it, try it
Don't give yourself a hard time if you really don't feel like eating in the 2 or 3 days after your treatments – you can make up for lost calories in between treatments
It is very important to drink plenty of fluids even if you can't eatDon't fill your stomach with a large amount of liquid before eating
Try to eat high calorie foods to keep your weight up

Read more at http://www.cancerresearchuk.org/about-c ... MF6ermM.99

Good night my friend
Love to you
Debbie And Family

[D.ap]

More for thought

For diarrhoea
Eat less fibre (avoid raw fruits, fruit juice, cereals and vegetables)
Drink plenty of liquid to replace the fluid lost if you have diarrhoea

For constipation
Eat more fibre, raw fruits, cereals, fluids and vegetables
Prune juice and hot drinks may help to make your bowels work
Avoid doing too much around the time of your chemotherapy treatment – you may need to rest
You don't have to eat a special diet if you are having chemotherapy – a well balanced diet is all you need
Eat well cooked food and avoid raw eggs and undercooked meat – these may give you infections

For indigestion or heartburn
Stop smoking
Limit your caffeine intake – for example, reduce canned drinks, coffee, chocolate and tea
Lose weight if you are overweight
Raise the head of your bed when sleeping or lying down
Don't eat for 2 or 3 hours before going to bed
Reduce fatty foods in your diet, such as deep fried foods
Avoid foods and drinks that may cause heartburn, such as citrus fruits (oranges, grapefruits), mints and alcohol
Take anti acid or anti sickness medicines as prescribed by your doctor or nurse and let them know if they are not helping[/quote]
image:


Read more at http://www.cancerresearchuk.org/about-c ... MF6ermM.99

[D.ap]

Mario
We are learning thru Joshua's care that prealbumin markers on bloodwork can show nutritional health even tho a lot of weight has been lost
However, I would encourage the 6 small meals as ,Olga had suggested to help you gain weight .
Even though your activity level is down you are not taking in enough caleries to gain weight
Also to beef up your vein volume you need more liquid intake as I understand it.

Have you thought of a feeding tube ?
It's no disgrace to help supplement your diet to get your stomach "jump started " to get back on the eating regiment once again. The possibility of infection is of course a topic to be discussed as cometrig suppresses the immune system as I see it.

Cancer and the cometrig will cause you to not feel hungry then it becomes a vicious cycle where your stomach and brain are not in sync so your stomach shrinks and can't accept food.
Talk with your doctor

http://www.m.webmd.com/food-recipes/pre ... blood-test

[cachabamba10]

To answer your questions;

Olga, overall I am on the same boat as before only that my disease has progress in the lung area because of the long times I was off cometriq due to my peryrectal abscess surgeries I had. I had close to 4 surgeries I believe in my rectal area to flush the abscess out. As of now, I only have tumors on my lungs, no cancer anywhere else (knock on wood). The tumors on my lungs are all in different size from 2mm to all the way at 4cm, the biggest one is like a cluster of a bunch. I have about 20 on each lung, I do feel how they are changes through out the years. By now I walk slower and the way I breath is different but I am doing okay still. I do not need oxygen or anything else, and my oxygen level is 98 to 96%. Cometriq still working but we really need to find something else to do as its looking more and more like Cometriq will not work anymore. CT was done with contrast but I hate that sincerely, I always have problems,usually the contrast gets out of the veins or a hematoma forms in the veins later after the scan. My veins are just really bad. Also, I do tried to go out at least once a day outside and spent time in the porch and getting sunlight. Dr. Durani did schedule a pelvis MRI in the upcoming weeks because he believes the pain might be pelvis related instead of back. I will make sure that they also cover my lower and upper abdominal area on the MRI I get done in a couple of weeks.The MRI will be done with contrast. One issue that I have is that I feel cold all the time, my skin overrall is cold always, its so bad that I only shower twice a week because I feel so cold and the water while I take my shower has to be super hot. Also the tingling on my feet and hands is getting pretty bad. Olga I believe that in the last thoracic MRI the upper Abdomen area was visible but not that great so just to be on the safe side I want the pelvis MRI to cover the whole upper and lower abdominal area for sure this time.

Bonni I had a bone scan about 2 months ago and I get one once a year.Dr. Durani recommended Marijuana for weight lose but sadly in Arkansas is illegal and I don't want any problems.

Debbie my weight is 128 but it goes up and down between 128 to 132. My height is 5'6.

Hope this helps guys;

Mario Arevalo

[Jorge]

Hi Mario,
I'm very sorry to know you suffering to the digestive system, back pain and skin problems. These all sounds like side effects of TKI. Did you think of changing Cometriq to some other TKI?

Thanks for sharing the news of the immunotherapy Clinical Trial at MD Anderson and I wish you can enter the clinical soon.
Lynette