chrissy23
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Belle,
You are so strong! I hope you know this. Sometimes, coming on this site makes me feel soo sad that I just want to crawl up in a ball and leave this awful place. We as caregivers do as much as we can but it kills me to not be able to take the pain away. Now that we are dealing with a recurrence, I am scared to be at this place one day. I don’t want chucks to suffer this way. It truly breaks my heart. I will pray for your sister and family. Still searching for the cure!
Christina
Hi Carol and anyone else this might be useful for.
The telephone number for IHCS (In Home Care Services) for California is 888-944-4477. This number is for California but if you are in a different state they might be able to direct you to a similar program in your area.
Christina
Finding a good oncologist seems to be the hardest thing now days. It is so unfortunate. Our oncologist Youram Nisser, MD is wonderful. He is familiar with CC patients and basically has a strong attitude toward fighting this disease. He told us “as long as you are up and willing to fight, I promise I will be right there along side researching and fighting with you” I feel so lost now that there is a recurrence but thankful that we have such a great oncologist who is in the fight with us. He takes very good care of Chucks and said there are lots of treatments out there available. It is just a matter of holding on and fighting long enough to find a combination that works for you and your body. He recommends high doses of Protein and whatever your body craves. He basically said if you can withstand a tub of ice cream but can’t eat anything else well then eat the whole tub of ice cream. It is a matter of keeping the weight stable during treatment. He said in his opinion many cancer patients don’t die of the cancer, they die of starvation. So keep up the good work and the fight. Take in what you can and try to stay positive.
Hi Carol,
I felt every word. I just applied for a service California IHCS (in home care services) basically they pay you to take care of a loved one. It is not much but anything helps. Now this is for California and I am not sure what state you live in but I am sure you state will have similar programs. Maybe you can call them and find out. I don’t have the number with me right now because I am at work but I promise I will get it to you a.s.a.p. The maximum hours they give is 200 a month 50 hours a week and they don’t pay much but you can definitely do that on top of your part time job and well like I said anything helps. I know this. I am the sole provider for our household and it gets so hard trying to stay on top of everything. I try to remain calm in front of Chucks so that he doesn’t feel my stress on top of his but sometimes it gets so hard. I get so overwhelmed and just feel like I have no one to turn to. His family doesn’t help. I have my mom and sister that have been life savers. My sister works afternoons and has been taking him to the doctor 3-4 times a week so that I can work and when she is not available, my mom takes him. I know there is also a program where they transport the people to their chemo appointments but he wants someone familiar there with him and so do I. I will repost the number the end of today or early tomorrow.
Wishing and praying for the best,
ChristinaI can’t even imagine. I break down just reading about it. My fiance’s bilirubin was up to 8 last week and now almost normal again. He was having similar symptoms. He was falling asleep on the doctor and very confused and lost. This week he is much better and back to normal pretty much. I don’t know what to say. This disease is so strange. May God bless the two of you. At a time like this financial issues should be the least of our worries but for some reason (for us as well) it becomes the main concern. I will be thinking about you both.
Christina
Sorry guys, Spelled the drug wrong: Here some info:
FDA-Approved Drugs: Vorinostat (Zolinza, suberoylanilide hydroxamic acid [SAHA])
Investigational Drugs: CRA-024781 (Celera Genomics), depsipeptide (Romidepsin)
Mechanism of Action
DNA coils around histones, which are proteins that help push the DNA strands into tightly coiled chromatin in the nucleus of the cell. Histones play an important role in turning genes on and off. When the chromatin is loose and uncoiled, the gene is turned on and DNA transcription can occur. If there is too much deacetylation of the histones (caused by an overexpression of histone deacetylase), such as may occur in cancer, the chromatin is tightly coiled and closed, so that the gene is turned off (cannot be transcribed). Deacetylation is the removal of acetyl groups from proteins or transcription factors. For example, if the gene that is silenced is a tumor suppressor gene, then without the “brakes” on cell division, cancer cells may proliferate. Another gene that may be silenced is a cyclin kinase inhibitor, which regulates the cell cycle. Again, the tumor would be able to continue to divide and make more tumor cells. Imagine a Slinky toy as a DNA coiled helix. When you move it so that the rings are open, you see that the portion of DNA that codes for the gene is exposed. When the rings are open, the gene can be activated and transcribed. When the Slinky moves down a step, it closes in on itself, and there is no way that the gene can be exposed for transcription. Vorinostat is a histone deacetylase (HDAC) inhibitor, which blocks the deacetylase enzyme and allows the acetyl groups to accumulate on the histones. This uncoils the DNA within the chromatin so that genes are exposed; they become activated and are then transcribed. This causes cancer cells to stop dividing (cell cycle arrest) and to die (apoptosis).
Vorinostat Metabolism
The drug is well absorbed, and if taken with a high-fat meal had a 33% higher extent of absorption and a slightly slower rate of absorption (not clinically significant). The drug is primarily metabolized by glucuronidation and hydrolysis, followed by oxidation into two inactive metabolites. Less than 1% of the drug is recoverable in the urine.
Indications
Vorinostat is indicated for the treatment of cutaneous manifestations in patients with cutaneous T-cell lymphoma who have progressive, persistent, or recurrent disease during or after two systemic therapies.
Patient Education
Educate the patient about the correct oral administration of vorinostat: swallow the prescribed capsules (400 mg) whole (do not chew or break), once a day with food. Drink at least eight 8-ounce glasses of liquid a day.Chucks and I had an appointment with our oncologist yesterday. I did some research on the histone deacetylase inhibitors and found an fda approved drug called Vonistat. I took the research to our oncologist and he was very interested especially since this is fairly new and the drug is fda approved so he can prescribe it. He said that he was going to do some research on the drug and find out what effects it might have on the liver and other organs and get back to us. He said that he is more than happy to try anything that might show promise and is safe for chucks to use. I will let you guys know what he says about this drug.
I’m so sorry sophie. My fiance was diagnosed in oct. of 06 and did have a major surgery that all other dr.’s said was not possible. We just learned of a recurrence and now we are just lost. I finally give up. I have to put it in Gods hands and trust him because at this point his health is deteriorating pretty quickly. I wish you the absolute best and will pray for you.
Christina
That is great news. I will pray that all goes well and that they are able to remove the entire tumor.
Chrisitina
well, gemzar and xeloda seem to be the first course of action here. The hard part is getting them to eat. The chemo really breaks the body down so I am just trying to keep him hydrated with lots of fluids in between his naps and then make sure he has a small bite to eat. My doctor recommended we buy the protein powder mix. I have been making him milk shakes with the vanilla powder, vanilla ice cream and a little bit of milk. I also tried a root beer float which he liked and asked for again. He seems to really like it and so far has been able to process it very well.
Sherri, I am so sorry to hear about your father and stepdad. They really are now starting to make advances with this type of cancer. Keep your hopes high and find a worth while oncologist that is willing to fight for him.
I have heard of him and read many good and (some bad) things. I am really not sure what to think. He is willing to take a chance which I think other doctors are not for fear of lawsuits, loss of medical license, etc. We honestly had a really great liver specialist at cedars-sinai who performed the initial surgery which other surgeons said was not possible giving him a year and 6 months without cancer (or at least without being sick.) Now it looks as though we have found a great oncologist who is really willing to try anything out there available for cancer patients which I do like. He will look into herbal supplements, fruit, etc. make sure that it is not harmful. It feels as though he really has our best interest at heart and that fills me with hope. I can’t wait to see his ca 19-9 drop. I just know that it will. It is sometimes difficult for me to stay positive but honestly I am the only one who does anything for him. Unfortunately, everyone else in his family claims to be there except physically, emotionally, financially, etc. Basically they say how they are there but show no signs of it. So I have to stay strong not just for me but for him.
I will pray for you and your family.
Christina
It looks like there are 3 small tumors in the liver. No where else. The doctors are looking at starting Gemzar and Xeloda next week shrinking the tumors down to a very small size and then using RFA to rid the liver of them completely. This is not the immediate course of action being that he has already had liver resection, his liver is compromised and don’t want to shoot it with too much radiation. They would rather shrink them and then do the RFA. Well, I guess I am just happy we have a plan (some course of action.) The issue right now is that he has a blood clot. I am looking forward to many more years with him. I am not going to let go that easy. If you guys have any suggestions, please feel free. It seems as though once again we have been blessed to come across a great oncologist who says that as long as Chucks is willing to fight, he will be right along side of him. He says that every patient is special to him being that his father passed away from cancer. He is willing to try anything available including Vitamin C shots. He said that he has done this for his patients but doesn’t know if it has really helped them. There is no sign that it has. Let me know what you guys think.
Christina.
I pray that your mother will see her grandchild be born. Life can bring such joy to any person. You are lucky to have 6 siblings that are all willing and able to help out. It is hard when you are doing everything by yourself.
Best of luck,
Christinaahh the fear that lingers above our heads!
I have battled this for one year 5 months. My fiance was diagnosed in October 2006, had surgery Jan. 2007 and is currently doing well with clear CT scans. Again, they told us not to be surprised if it comes back and that has been a constant battle for me to just let go and live life to its fullest potential. I wish you the best Deb. and many prayers. Jeff has given me hope like no one else can. 9 years and still fighting and you know what… still positive. You are amazing Jeff! So to answer your question. Many of us have heard that. I try to take the good with the bad. Life is too precious to waste it worrying.
Christina
I think that is the hardest part of everything. When Chucks was initially diagnosed, he was 29 and had just graduated from college. He was so angry at the world thinking “why me” It was very hard for me because us as family members, wives, husbands, friends think the exact same thing. I know I did. “why me” “why does this have to happen to my boyfriend?” I was even selfish at one point thinking “I am going to be the one left here unhappy and alone” You can only do your best. Give your sister all of your support and love. I pray everyday for all of you. I wish I could say more.
Christina
