middlesister1
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Hello,
I thought Mom’s diagnosis had helped me appreciate each day, but your beautifully written post brought tears to my eyes this morning . I am sorry that your firend has been been afflicted with this cruel disease, but glad that she has her family and your close friendship to support her.Thank you for sharing.
Catherine
Often the comments to articles have some really off the wall people making comments (makes me wonder at times if it’s safe to leave the house). However, if any see articles from reputable sites where there is an opportunity to comment, may not be a bad way of getting some visibility.
so sad that I read the comments on CNN that are not part of the article, but a discussion that follows from readers… I was hoping for more visibility, but I hope the comment below sinks to the bottom (It still is near top when sorted by best comments).
“Among the risk factors for the type of cancer he had (Cholangiocarcinoma) are alcoholic liver disease, or cirrhosis of the liver (obviously caused by excessive drinking); Hepatitis B (often transmitted through sexual contact or intravenous drug use) and Hepatitis C (often transmitted through intravenous drug use). So while we don’t know that any of these played a role in Tommy Ramone’s cancer, nevertheless, these risk factors are often a consequence of fast living.”
I tried to respond, but not sure if they cut it because I included link to CC site or if it is just taking a while to be cleared.
Ticks me off.
Kris, just wondering, I have access to labs, but do not have notes or scans. Should we start to register or do we need those? We don’t see onc till September so probably won’t press Mom to collect more records until then. Thank you
Gavin-
Sorry I’m a day late. Yesterday I was very blessed to be able to spend the day with my father. However, during the day my thoughts often went to how appreciative I’m sure your father was to have you as a son. I am so sorry you lost him much too early in life.
Love and hugs,
Catherine
Hi,
Mom only did 3 cycles of Gem/Cis. The off week, symtpoms were better, but she was still tired and we didn’t do a vacation till she was off chemo totally for 3 weeks. We were also worried about exposing her to germs on a plane while her immune system was compromised.Our first cycle was the worst- for next cycles they gave her Emend in the IV during chemo (very expensive to have pill form to take home) and also 2 streoid pills the day of chemo (dexamethasone (DECADRON) 4 MG PO tablet) and then 2 pills a day for the 3 days following chemo. For Mom, the steroids were so good that she no longer needed the anti-nausea meds. I wonder is steroids might also help with bone pain (would be a doctor question) ?
Where we messed up was when she went in for Y-90 treatment and was having nausea during recovery, when we asked for steroids, they said they were not anti-nausea (different set of nurses on the radiology floor) and would not administer. Her vomiting got so bad that out-patient turned into an overnight at hospital. It is a learning experience and we will be more emphatic in future treatments.
Goood luck!
Catherine
Dear Samira,
I am very sorry to hear about the loss of your Dad. My thoughts are with you.Take care of yourself,
CatherineGood morning,
Mom’s scan showed tumor has not grown (4cm with necrosis from y90 in center) and no other areas of disease. We were thrilled with all stable. Ca-19 has gone from 47 to 49, but they said that increase is considered stable as well.
Unless she startes feeling symptoms, we were told to come back in 3 months for another scan. We are so happy to have a continued stretch of treatment-free time. When needed, will go back on gem/cis.
Catherine
Congratulations! I hope the next years have less challenges along the way. Thank you for sharing and giving hope to others.
CatherineLainy-
Your subject line of “If I may” is so polite , but I’m sure you realize information on how you are is so welcome and desired by all of us that you take care of in this community. Can’t wait to hear the great results from the stomach MRI as well.
Catherine
Hi Marion and Gavin,
For the past few months, we’ve been ignoring that Mom has this disease and enjoying life. However, Onc appointment Monday and I was hoping you could confirm- the request for information on the homepage (Mayo?) and patient registry- are they two different initiatives or if she does the first will her info be included in the registry?
I also will be questioning her doctor as to why Univ of MD is not listed as one of the major cancer centers. They have the multi-disciplinary tumor board and one of my mother’s doctors (Dr. Moeslein) has been mentioned by Percy as a source for second opinions. I have read some of the experiences of non-responsive doctors on the posts, and so far, we are grateful for the support, compassion and responsiveness of her team of doctors.
Thank you!
CatherineMy heartfelt condolences are with you. I am thankful that his passing was peaceful, but still wish you and Paul didn’t have to be part of what I agree is a horrid disease. I Hope with time the 35 years of memories will overshadow your recent times.
Catherine
Dear Caroline,
I am so sorry for your loss. As others have mentioned, the vast amount of love your mother received and gave to her family was so evident in all your posts. I’m glad she made it out to CA for the end of her journey.
My thoughts and prayers are with you and your family,
Catherine
Hi- Mom is not a big drinker, but we are Irish, and family gatherings/celebrations typically do include a few pints or a glass of wine. During chemo, she never had the desire to drink, but after the chemo and the Y-90 treatment was over, she was looking foward to the planned beach vacation and sharing a cocktail with family at the cabana bar. Doctor said no alcohol for first couple of months after y-90, but after that, “do not go on a bender”. I’m pretty sure that the doctor realized that her “drinking” would be nursing a beer or glass of wine for a few hours and going on a bender was never a worry even before diagnosis. Vacation was wonderful and she did have an occasional drink during the week.
If all goes well, (scan is next week) , hope that in July we will have a vaction up to Portland Maine which will involve at least one loster roll with a cold beer on a dock overlooking the harbor.
(Should note- Mom did not have a resection and liver function has been normal except for during chemo.)
Catherine
