debnorcal
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Daisy, you and your mum are in my thoughts and prayers during what I’m sure may be a very difficult weekend.
Hugs,
Debbie
Marion, I just saw that your birthday was yesterday. Hope it was wonderful, filled with all your favorite things!
Debbie
Julie,
Understandably, this is upsetting. Try to keep in mind that the arsenal of tools to effectively battle this monster is ever growing. You are in my thoughts.
Debbie
Tiah, that’s great news that the surgeon feels comfortable performing surgery. I hope your mom continues to feel well and can enjoy her time with family as she waits to have her surgery.
Tiah,
Glad your mom is feeling relief from the pain. Try to relax and not worry about the interim ct. As you said, her doctor should have a much better understanding of your mom’s current status
Once the new CT is done for comparison. Praying for positive improvement evidenced in your mom’s upcoming scan!Lorraine,
I would like to join in welcoming you to our site and congratulate you on your successful surgery. I hope you are having an easy recovery.
Debbie
I’ve been reading media publications lately that indicate that oncologists, pathologists, etc. are seeing evidence that when metastatic tumors appear in organs other than the primary tumor location, the new tumors sometimes do not have the same gene expression as the primary. The thinking is that mutations have occurred.
A dear friend of mine recently lost her mom to cancer. She had lung cancer as a primary. They identified the genetic profile and determined that a certain immunotherapy treatment would be appropriate. At some point, the cancer metastasized to her bones and other organs. Sadly, treatment yielded mixed results. The primary tumors in her lungs showed considerable shrinkage, but the treatment seemingly had no impact on the secondary tumors. This is purely anecdotal, but supports the idea that mutations may occur as the cancer spreads to new locations.
Note: this is based on my limited knowledge obtained from a few articles I have read, and on the experience of one friend. I’m sure there are others on this board that are far more knowledgeable than I, and hopefully, they will share their insigh.
I just sent you a private e mail message with the summary you requested.
Just want to mention that before we switched to UCSF, our HMO oncologist had recommended radiation. My husband was marked for the radiation but then had his appointment for a consultation with UCSF before receiving the radiation treatment. The doctor’s eyes grew wide when she saw the radiation tattoos. She was relieved when told Mike had not yet received radiation. She went on to tell us that radiation changes the tissue and makes it difficult, if not impossible to have surgery. She equated it to working with wet tissue paper. You didn’t specify if your husband received the single dose or not. If not, I would suggest holding off until you get a second surgical opinion. (I know there is a compounding effect of radiation treatments, so, if he did receive one dose, I’m not sure one treatment would do significant damage.)
You are doing a great job caring for your husband. Please keep us posted of your husband’s progress. We are all here to support you in any way we can.
Pam, I would also like to welcome you to our wonderful group although I am sorry you have reason to join. I agree with the points Lainy made about stenting to relieve the bilirubin buildup and second opinions from cc experts. Based on your comments, it sounds to me like your current doctors are probably good generalists, but have little experience treating Cholangiocarcinoma. In my experience, this type of Doctor is not well versed in current treatment options and tends to give up and offer only a palliative approach.
Your husband’s condition sounds very similar to my husband’s when he became ill two and a half years ago and our first doctors said there was nothing they could do for him. We sought other opinions from several medical centers that have multidisciplinary teams that handle many cc cases per year. My husband’s (amazing) surgeon told us that, despite his advanced stage, he could remove the tumors and he did so successfully. Even if he hadn’t been able to do so, the team had a number of other promising options. You might want to click on my account and reared of our experience. I also typed a summary and would be happy to forward it to you via email.
Although this is very difficult for you and your family, try to take it one step at a time and find the best option(s) for your husband by getting him seen by experts. That’s how many of us get through this. Best wishes, Debbie
Wesley,
Welcome to our group, although, of course I wish you didn’t have reason to be here. It sounds as though your mother is having a good response to the gem/cis based on the dramatic improvement in her markers (I am assuming that’s the CA 19-9). I’m so glad she tolerated it well and is feeling okay. Please keep us posted on her progress.
Debbie
Brigitte, I am sorry that you are experiencing pain and an irritated stomach. Based on my husband’s experience and comments I’ve read from others on this board, it seems that the symptoms occur and/or get worse the longer a patient is having chemo treatments. Good idea asking oncology nurse about side pain. (I know from an earlier post you are reluctant to take pain mess due to concerns of getting too reliant on them. However, I think small doses for a short term can be a big help in maintaining comfort.)
I hope your upcoming scans show a good response to the chemo. Try to take it one step at a time. There are several other options to consider if the chemo stops being effective. I know this is so very difficult to go through, especially when you have lost your husband and sister. Please know there are many people that care and are here to support you. You are not alone.
Debbie
Cathie,
I also urge you to obtain a second opinion from a physician that has expertise with CC. These physicians are on the front lines, seeing and treating many patients with cc, and they have the best understanding of which treatments or combinations of treatments are the most effective for their patients. I completely understand your sister’s sense of confidence in a physician she likes and trusts, but I have also learned that even kind and very bright doctors are not going to be nearly as equipped to deal with this specific cancer as one with a lot of actual experience. The latest knowledge simply has not filtered out to the general oncologists and so they have a palliative approach rather than an aggressive approach to treatment. Please tell your sister that it is now quite common for patients to seek second opinions from specialists, and most doctors understand that and do not get offended.
Wishing Konnie all the best.
Debbie
