jean
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Hi AB
Thanks so much for your response and the information. I am so glad to hear that your dad is doing so well…that is wonderful news! I think I will try the triphala and the turmeric. They seem to have few, if any, side effects and I do read quite a bit of positive information about them. I haven’t yet decided about the Ashwagandha…have you had any experience with it? I think diet is certainly a really important component and, at the very least, puts one in a state of health that makes one better able to fight whatever may arise. I try to eat almost all organic, mostly vegetables, fruit, and whole grains, and minimizing meat and dairy. It’s been quite a change in my diet so it’s still a work in progress!
Thanks again for the information…I very much appreciate it. I’m hoping your father will continue to get such good news…please let us know!
Jean
Welcome Amanda…very glad you found us here! As Patty said, you’ll find a wonderful group of people who are very knowledgeable, supportive and caring. Every one’s circumstances are so different but we share so much in common. Feel free to ask any questions as there’s usually someone with the answer…or at least an opinion! It’s good to hear that Aime’ is doing well and that the radiation was effective. If the MRI was done very soon after the radiation, it doesn’t always reflect accurately the tumor response. Radiation does keep working for really up to a month or so after the treatment is completed, so scans done too soon sometimes don’t show all of the tumor shrinkage. You might look under the search function for Cyberknife. Lainy’s husband, Teddy, recently completed IMRT external beam radiation with a Cyberknife boost and had very good results, so would be something to look into.
Wishing the best to you both!
Jean
Thanks Marion and Patty! That web site does look like a good and pretty comprehensive one. Maybe I’ll try just eating a lot of curries…one of my favorites!
Jean
Suzanne
I found the article on Pub Med…just google Pub Med and then type in the title on the Pub Med site. It’s the abstract only but hopefully will have what you need. Hope that helps!
Jean
Lainy
I was so happy to hear the news about Teddy…what a wonderful way to start the New Year!!!!!
Jean
Hi Patty
I’ve wondered about this question too. I was diagnosed with an autoimmune disease about 3-4 years ago, psoriatic arthritis. I have always somehow doubted the diagnosis, though two different rheumatologists did diagnose it! They advised starting one of the drugs used for rheumatoid arthritis but, due to the possible severe side effects/adverse reactions, I elected not to so so. It’s presently in remission so I feel I made the best decision for me!
I’ll be interested to read others input on this question.
Jean
Kris
So sorry to hear of your continuing hard times. I can’t believe they would do that…without anesthesia…what were they thinking! Patty’s right, “barbarism is alive and well”!
Where exactly did they find the “spot” on the ERCP? If it was in your stomach, I would guess that it’s more of a formality and that they would feel obligated to biopsy it in anyone with a cancer diagnosis.
You asked about how bone metastasis are diagnosed. Most commonly a Bone Scan is done, in which a radioactive substance is injected and then the whole body is scanned a few hours later. A CT Scan can also be used, especially for the pelvis/sacrum bones and soft tissues. An MRI is especially useful in evaluating for metastasis to the spine. X-rays can be used alone to help diagnose or to further clarify lesions seen in other studies. I don’t think the reliability of the PET/CT Scan has been clearly established in bone metastasis, though it is being used more often. It tends to be more accurate in some types of cancer than others and I would guess there have been no studies on it’s use in bone mets in CC.
I am so glad to hear about the MRI results…that is VERY good news! You must be so frustrated though…the Prilosec again, that didn’t work before and made you worse. Still working on those Swedish lessons!!! BTW, have you tried Carafate? It works differently than Prilosec for stomach ulcers, kind of coats the stomach.
Kris, I just think this is only another bump in the road. Know that I am sending every good thought and positive energy your way…I wish they would just find out what’s wrong!!!!!!! Hoping to hear good news very soon!
Jean
Sarah
It’s my understanding that many chemotherapy drugs are used as radiosensitizers or potentiators when given concurrently with radiation. Commonly used in the case of CC are Gemzar and Platinum based drugs such as Oxoplatinum. They, in essence, cause the tumor cells to be more sensitive to the radiation thus making the treatments much more effective. So, I’m sure that’s why this is being recommended. The chemo drug is usually given at a reduced dosage when given with the radiation, as opposed to when the chemo is given alone, and so is better tolerated. Many of the drugs commonly used in CC are considered to be radiosensitizers: Gemzar, Platinums, 5FU, and the oral form of 5FU, Xeloda.
I hope that makes sense. Don’t you wish though that everything was just clear and that there was just one best way to do things…one best treatment! Wishing all the best to you and John. Please keep in touch and let us know what he decides and how the treatment goes.
Jean
Iris
I was so very sorry to hear that Peter had died. He sounded like such a very special person, who fought so courageously. The celebration sounds so beautiful…I hope it will bring you many memories that will bring you comfort.
You were one of the first to welcome me to this site back in May…your encouraging words have stayed with me and have meant so much to me.
Sending wishes for strength and peace.
Jean
Thanks Carol & Lisa! I think of you both very often.
Carol, I hope Charlie is feeling well and is able to be out and around a bit, and is not in any pain. I was looking at your website…it’s wonderful! And Ben and Sarah seem very special..you must be very proud of them!
Lisa, I was a bit worried when you posted about lymph node metastasis…I hope all is well and it was just a question of interest and not having to do with you? Hope the kids (and the dogs and the horse!!) are all doing well too and that you were able to have a special Christmas, despite all of the snow!
Sending all my good wishes for the New Year!
Jean
Suzanne
So glad to hear that everything is moving forward and they finally are doing what they should have all along! Wishing you a very successful appeal! The lack of equity in our present medical system is so frustrating and unfair…but that’s another subject!!
Wishing you and your family all the best in the New Year!
Jean
Hi Lainy & Marion
Thanks so much! It is indeed a wonderful way to start the new year! I am so grateful for this good news. I hope SO much that this will be a year of good news for all here. A year in which research is done that will bring hope and that there will be actual breakthroughs in treatment and early detection and diagnosis. Now that would be the VERY VERY best of years!!!
Jean
Suzanne
I’m so sorry for my very slow reply. I have had a very difficult week…my mother was brought to the hospital with chest pain, which turned out to be an aortic dissection. She was in the CCU for awhile, but was discharged yesterday and is now home and doing quite well. She was in a hospital 45 minutes from where I live, in good weather…then add the snow and ice and Christmas and work!
I did want to let you know what I had found out about your insurance issue. I was able to talk with three people in two PET departments. They all said that while you can initiate the appeal, it is only the doctor who really has the power to work toward getting this approved. I did learn that BCBS in Washington State is now approving all PET scans, regardless of diagnosis, but all have encountered problems with out of state BCBS plans. The federal government/Medicare lists those diagnosis that they cover and when one fall outside these, the reason usually given for denial is that it is experimental/investigational for that diagnosis. They all said that it can take a lot of persistence, but that the doctor most importantly, has to be persistent in the appeal…or maybe that the patient has to be persistent in making sure the doctor does what he/she needs to do! They all suggested that you put in the appeal as soon as possible so that the doctor can do what is needed to help push it through e.g. faxing of all of the requested records. One person suggested that you obtain the codes involved with this, putting it in your correspondence, and that might speed their processing. That would consist of the diagnosis code (ICDA) and procedural code (CPT). Another person suggested that you request a case manager from BCBS and that such a person can sometimes push through appeals/authorizations that might otherwise not have been approved, especially as they become familiar with your case. Two people suggested that, once you have made the appeal, to obtain the name and phone number of their staff MD who reviews claims and have your physician call them directly. It’s called a peer to peer review. They said that it is very commonly done and can be a great deal of help in obtaining approval. They all said that your physician does need to be involved and is the only way for you to get this approved…they were adamant that you simply could not do this alone! They were all quite surprised that you had been placed in this position and that your doctor was not taking more initiative in the matter. I was just wondering if it would be helpful for you to contact the person who does the insurance authorizations for the PET facility that you would be using…I found all of these people really helpful and felt that they would certainly do all they could in helping obtain authorization.
There certainly doesn’t seem to be any magic answers to this! In essence, they all said that there wasn’t anything that you could say that will really make a difference, to go ahead and put the appeal in place, and then get your physician involved.
I hope you had a very good Christmas Suzanne. Wishing you all the best in this new year!
Jean
