Tag - Vincristine

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Harsher Realities
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Sunshine amid some Darkness
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Jaundice

Harsher Realities

Tuesday April 22nd, 2008   Insurance

Today is the second day of taking the liquid multi-vitamin, Kayla seems much calmer, while having more energy. Probably sounds like a weird description but I do not know how else it could be described. Over the past weeks Kayla’s energy level has definitely improved. I attribute this to all of the supplements that she is taking and the Omega 3,6,9 oils.

One of the parents called me today, in a complete tizzy that her two-year-old daughter, is battling brain tumors and the insurance company is refusing to pay for procedures and trying to demand that she switch hospitals. It is so disgusting that these companies can do this to their clients, especially when they are battling something so debilitating as cancer, they are disgusting! I have heard of these kinds of things over the years but never really paid attention to them. Now I regret not trying to do something about it. There is a major situation in America with Healthcare and Insurance!

Her doctors figured out how to get her daughter treated by admitting her into the hospital and giving her the needed shots in house. They figured out if they did it this way insurance would pay. We have a real crisis looming in our future regarding insurance…

Wednesday April 23rd 2008.

After breakfast I took Kayla to the park because no one would be there during school hours. It was a beautiful day, sunny, nice breeze, and the perfect temperature. Kayla loved swinging on the swing while I tried to tickle her. She then went and climbed on all of the tubes and slide in the park. She also walked the equivalent of a small block. This is a first! When we got back to the house I made her protein shake and added ¼ teaspoon of Spirulina and Kayla loved it. Normally it takes her a very long time to drink her shakes no matter how I make them, but this time she sucked it down and said that the green stuff really tasted good. Who would’a thought? Kayla did not argue about anything today. Ever since I got the news about Megan’s impending death, I decided that I did not want to get stuck into just doing our treatments and not enjoying life. Because of Megan, I had an epiphany and make the effort to figure out joyful things everyday. This has made a big difference for all of us.

Friday April 25th, 2008.

Beach Day! We went to the beach and the weather was perfect! Kayla had a great time but she misses being with kids everyday. Oh well, at least we got out and enjoyed some new scenery and weather. Kayla’s appetite and digestion are doing well.

Monday April 28th, 2008.

Kayla’s ANC is 2800 so today will be a big chemo day. She will get Methotrexate in her spine, Vincristine in her port and Doxorubicin in her port. Steroids start today, but I thought I had two months before the start of this phase. I asked about it and the nurse said I was incorrect. I am almost sure I am not mistaken but they say I am.

I asked the physicians assistant about supplements for Kayla’s bones and she replied that she is doing fine. I hate these f___ing people sometimes because they know all of the side effects but do nothing to help the patient mitigate these effects. To me it is a complete lack of responsibility on the whole medical system to not invest money, time and effort into complimentary and alternative therapies that help the patient get through chemo. It is just maddening! If there were this type of help and support for cancer patients I think the quality of life would be greatly improved. What I see instead is the use of more drugs for every symptom. This is not a solution. Chemo wipes out good cells as well as cancer cells, the steroids suppress the immune system. I know that these things have to be done, but why not use vitamins to help the body cope? Kayla now weighs 58 ½ pounds. She has lost four pounds since she started treatment while she has continued to grow.

Wednesday April 30th, 2008.

 The steroids are kicking Kayla’s ass. She is in a lot of pain. I found a book that we had Reflexology for Beginners, it is helping a lot because I can look for the area of pain and then massage the corresponding area that the book tells you to massage. It seems to be helping her and she likes it.

The steroids cause problems with her stomach and even though Kayla is taking Prevacid, she is still having stomach pain. We made a steroid chart so that we can count down the days until we are done. She liked this activity.

We walked the dogs together, and later she had her protein shake. At 3:00 in the afternoon Kayla felt really bad, tired and dizzy. She took a long nap. I feel like I am on a roller-coaster ride and I can’t get off!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Sunshine amid some Darkness

Saturday 29 March 2008

Kayla did lots of exercise today, crunches, weight ball, stretches, & resistance. She started taking the Cal-Apatite today as well. I decided to have her get some sun everyday because she looks incredibly pale. Florence Nightingale is a proponent of fresh air, sunshine, and cleanliness, so I decided to try it. The other point is that I did not have Kayla use sunscreen because I want her to absorb the vitamin D for her bones. We have a screen over the pool, which blocks 15 to 20 percent of the rays anyway. I placed a timer next to Kayla and we actually started with four minutes in the morning sun because I do not know how much her body can take with the chemo. We’re playing it ultra safe. When the timer went off she begged to stay longer but I had to say no.

Sunday 30 March 2008

Kayla read 15 pages today! Kayla also walked from our family room to the office with her walker.  While she walked she screamed out at her neuropathy I HATE YOU! And she just kept walking. I am so proud of her!

Monday 31 March 2008

Clinic day for Vincristine and PEG, these are the two chemo drugs for today. Vincristine stays in the body approximately a week. PEG is the inter-muscular shots in the legs. Kayla was all set up and ready for the leg shots. She counted and then the nurses placed the needles in her leg. Kayla got hold of one needle and was plunging the medicine and the other nurse just plunged the medicine into her muscle with the other needle really fast. This was quite a shock for both of us, but really for Kayla. I do not understand why this happened. Kayla sobbed afterwards, partly from shock and also from the pain of it. I have had inter-muscular shots and it really makes the world of difference if the medicine is allowed to go into the body slowly. The difference is night and day with regards to the pain of it. When it is plunged slowly there is mostly just discomfort and it gives the body time to accept the liquid. Plunged fast, your talking serious pain because the liquid is being forced into muscle fiber and forcing it apart. I bleeping mad! It’s times like this that a person could get violent with the stupidity and ignorance of a nurse whose treatment is like treating a thing instead of a human! This will not be allowed to happen again. UGGGGH – shit makes me really crazy.

Kayla’s Hemoglobin is 6.8 so she has to get a blood transfusion. Normal hemoglobin is 8.0. The transfusion will take 4 hours.

The oncology research nurse (I love her!) sent out emails trying to get information regarding bone repair during treatment. I had also given her a copy of the book Comprehensive Cancer Care and she loved reading it. My hope is to try and open some of the views at the clinic to alternatives and supplements, etc. She is helping me on this little project and I bring her several copies of the book and then she hands them out. Anyway, she gave me a copy of an email from a doctor at Harvard, and here is what it said.

Hi,  

This is certainly an unusual presentation, although the infiltrative disease itself can cause osteopenia, and the methotrexate and steroids are going to exacerbate it. When you say you did a scan, was that x-ray or DXA? If a DXA was done, she should have one in a center that can compare it to her bone age {which should be done at the same time, if not done in the prior six months) and has appropriate age-matched controls.

Given the unusual fracture presentation, I would check calcium, phosphate, magnesium, albumin, alkaline phosphotase, PTH, 25-hydroxyvitamin D, ad 1., 25-dihoxyvitamin D levels; as well as urine calcium:creatine.

Calcium and vitamin D should be maximized for everyone. At her age, she should be getting at least 800 mgs elemental calcium daily (in divided doses). Previous recommendations about vitamin D intake (400IU) are probably too low, and she should get more like 800-1000 IU.

If she has osteoporosis and has had 3 fractures, there would need to be consideration of the use of biphosphonates, but I do not know about use concomitantly during Leukemia treatment.

I have cc’ed the Director of our Bone Program for additional insight, as well as whether she knows who is an expert in pediatric bone disease closer to you in St. Petersburg.

Regards,

Because I do not have permission from the author, I cannot publish their name. Plus when this letter was given to me, the names were blackened out, because this was communication between medical personnel. This letter made me very happy as Kayla is getting 1000 mgs Vitamin D a day and I believe her calcium ratio is correct as well. So again, I am on the right track. Its nice to be validated by authorities while also getting additional insight into other supplementation.

 

 

 

Jaundice

Friday 25 January 2008

Urine going back to a normal color.  Kayla now takes Omega 3,6,9 oil and Parsley tea.  The tea is specifically for the kidneys. So simple to make. Take 1 bunch of fresh Parsley from the grocer. Put a pot of water to boil on the stove. Rinse Parsley. When water is in a full boil dump in the parsley and time for three minutes. When time is up remove pot from heat and allow to cool. Throw away the parsley and the remaining tea will be a pale green color. This tea is gentle and wonderful for kidney/liver health. We will do this whenever Kayla’s skin starts to turn yellow, a condition called Jaundice.

Definition of Jaundice: noun 

  1. a medical condition with yellowing of the skin or whites of the eyes, arising from excess of the pigment bilirubin and typically caused by obstruction of the bile duct, by liver disease, or by excessive breakdown of red blood cells. From Dictionary.com
    In addition to that definition I feel that the stress of chemo can also cause Jaundice or skin yellowing because the body has a hard time digesting such hard chemicals. The parsley obviously helps.

Saturday January 26th 2008.  Kayla slept most of the day today.  Friends came over in the evening and it was so nice to have adult company.

Sunday January 27th 2008.  Kayla was up at 11:00 am and then went back to bed because she had a stomach ache,  Later a friend came over and she had the chance to play with another child.

   Monday January 28th 2008.  Clinic day!  Kayla got chemo at the clinic and while we were there the doctor approved amino acids, Glucosamine & Condrointin for her bones and we are trying ant acids for her stomach aches.  At night Kayla was up at 2:00 and 4:00 in the morning in pain with her stomach.  She would not let me try and give her something for the stomach pain.  The amino acid supplement that the doctor approved is specifically Master Amino Acid Pattern.  This contains the 8 amino acids that are essential to life.  A chiropractic friend recommended these saying that they will help Kayla’s liver.  The website is www.bodyhealth.com

We have not seen results from the Master Amino Acid Pattern supplement yet, will let you know.

Chemo Kayla is on or will be on and their side effects;

Cytarabine: affects liver, nausea, low blood counts.

Vincristine: constipation, neuropathy (nerve pain), abdominal pain, vision.  

Asparaginase: liver and pancreatic abnormalities, high blood sugar, thirst.

Methotrexate: kidney damage, headaches, mouth sores.

The above is just notes I wrote for myself on the side effects of these chemo’s so that I could do further research on them.  It actually makes me physically ill when I read this stuff.  It is nerve racking to say the least.

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