middlesister1
Forum Replies Created
-
Posts
-
Hi-
Mom had PET in Oct 2013. A few weeks back her ONC said one is not needed now. However, just met with interventional radiologist and he said it should be done about every 12 months.
Catherine
Hello,
I’m glad we pushed rather than wait for progression and then go back on chemo. We asked our ONC to have the “tumor board” team to take another look and their suggestion was to go and do the Y90 again (had it done in Feb). They stated that since she has been stable since then (no mets anywhere else) and she has responded so well to the 3 chemo cycles and SIRT, to go back and hit it hard. Goal is not only to kill the tumor, but to effectively have a radiation lobectomy. Since the left lobe is so much smaller, plenty of right left to function well. Additionally, right lobe has already increased in size to pick up damage they did to left in Feb.
So far, I only found one reference to radiation lobectomy and the HCC patients had a 46% 5-year survival (not too shabby), but that Mom is ICC and in a lousy location, we’ll see how it goes (this is my concern not something doctor said). However, we are very happy with going down this road. The Y90 is outpatient and fatigure for about 2 weeks. She will have to go on xeloda 2 weeks prior and 4 weeks after to promote uptake of the radiation. PET scan will be 3 months later. Hopefully we are doing this soon enough.
Catherine
Hi. We pushed to see if we should be aggressive rather than wait for a bad scan and then restart chemo. Meeting is Tuesday with interventional radiology and we may do more SIRT. I read another post today which mentioned that because surgery was not an option all they could do was chemo. I hope all are looking into other options as well (rfa,radiation,sirt,etc) . You need an interdisciplinary team and not just an Oncologist. Onc view seemed to be that Mom already has surpassed the norms, but I do not think she knows that the norm has changed and although gem/cis is standard first line, targeted treatments are contributing to longer survival times.
Reacher,
When Mom was diagnosed last October, we were also told that most survive only about a year and chemo extends life only about 3 months on average. I am very thankful that she didn’t decide to not do the chemo becuase if it was only going to give her a few more months.
Her 3 rounds of chemo shrunk the tumor about 25%. Then she had SIRT (radioactive seeds) in Feb. The radiation also shrunk the tumor more and killed many of the cells. She was tired for 4 weeks after the radiation, but since then she has been living and feeling fine (3 vacations since March). Her tumor is still stable, but when it starts to grow, we’ll go back on the chemo. As others have indicated, many more people are living longer and better lives than would be indicated by the older statistics.
The chemo was not only to either keep the tumor stable (or hopefully shrink it), but to give a treatment that would kill cancer cells that may be present in areas beyond the tumor.
Treatments like radiation target the tumors directly.
The only “cure” I am aware of is when they are able to do a resection and get clean margins. We had hoped for this, but when they went in to do the surgery, location made it not possible. So, even if it can’t be cured, goal is to treat as needed and approach as having a chronic condition.
On the main Cholangiocarcinoma Org homepage, under the “Cholangiocarcinoma” heading, they have a section on treatment options.
And- welcome Debbielax! I am impressed how quickly you were able to reach out and get the second opinions. Returning to work is wonderful.
Good luck to you both.
Catherine
To use Lainy’s term- YIPPEE!!!
Met with Mom’s oncologist, and tumor even got a bit smaller (3.5×4.1) from residual radiation effects from SIRT she had in Feb. We were told come back in another 3 months. From what I’ve read, treatment free for such a long spell is a blessing – we were so thankful for the results.
However, I still worry that we should be doing more. I asked about RFA and just sent her doctor recent references (thank you Gavin) showing how patients after SIRT went on to eradicate a single tumor using RFA. I also sent an article from last month where the mean survial was 38 months (out to 69 months) for this treatment. It was a small study group, but guess that is the norm for CC.
http://www.ncbi.nlm.nih.gov/pubmed/24637151.Mom mentioned on the ride home that she feels like she is living with a ticking bomb inside of her. Her oncologist said she would confer with the team and see their thoughts on additional targeted therapy. Dr. Moeslein (Percy has mentioned him) did her SIRT and also is a pioneer in nanoknife . I’m not sure if he does RFA as well.
I worry that we may be missing an opportunity while the tumor is small to treat it, but also worry that I am pushing to put her through more invasive treatments that may not prolong her life. I guess what no one has definitively answered (and probably don’t know) is if we get rid of the one tumor, will it give us a longer stretch of time till it progresses.
Her doctor only treats a handful of CC patients, and Mom has already exceeeded her expectations from first diagnosis last October. They (Univ of MD) do have a diverse tumor team, and so far I feel her treatment has been the best possible mix of agressive treatment with minimal impact to well being and quality of life.
Thank you all for being here.
Catherine
Sirena,
Worrying doesn’t help, but of course we do. It would be so wonderful if we could just turn off feelings that we knew weren’t helping, but I haven’t mastered that talent yet and probably never will.
At first when Mom was diagnosed and surgery was unsuccessful, I thought we needed a miracle.
However, your speaking of “mercies” I see as small miracles. We have had a bunch over the last year.. when tumors shrink, or even stable, or when a loved one can tolerate chemo and keep up a good quality of life… I am saying maybe we are getting those little miracles.However, Big miracles and a cure would still work for me as well. I wish for you at the least, many of those mercies and small miracles.
Take care,
CatherineDear Carols,
I am very sorry for your loss. This morning I looked back on your earlier posts and it was easy to see how you were there for your mother through her long struggle with this disease. She was fortunate to have such a loving son.
Take care of yourself.
CatherineI am so happy for you! Those are amazing results.
One thing we did learn was that when quoted the months on average that chemo gives you, it truly is an average. For those who are fortunate and respond well, now they have time or other options to try radiation or other treatments. Others have gone onto clinical trials or even became surgical candidates. And our first gem/cis was horrible. Almost gave in then but spoke to onc and they treated the side effects. Please do not think chemo can only give you two or three months.
SIDE effects of chemo and radiation were hard for 4 months, but mom has now had almost 6 months since last treatment that we have spent having quality time and a few vacations too. At this point she feels normal 10 months after diagnosis. And from what I’m witnessing here from other members, I am confident that her original estimated timeline is no where near what we can hope for.
For us, emend and steroids were the wonder drugs ( not the anti nausea meds) that made chemo tolerable. If your Dad goes through more chemo, I would ask your doctor to see how the side effects can be helped. Many others seem to have had the emend and steroids help too.
Take care,
CatherineAmanda,
I am so sorry you lost your mother at such a young age- your post is a tribute to what a special person she was and how much you loved her.I am thankful that at least her passing was peaceful.
My thoughts are with you and your family.
Catherine
What a beautiful post Duke, thank you for sharing. I’m always a bit amazed and a little envious when you see people who have such a positive influence on everyone they touch.
You’re one of those people too (and of course also lainy )
Hi Jan,
I didn’t respond to your other post since a month after finishing 3 Gem/CIS cycles, Mom went onto a SIRT treatment. Although she was better by the time she went onto the radiation, I do not think she was back to her normal self at 4 weeks. Even two months after the SIRT, she still had some tiredness. However, I think that 2 months after chemo without additional radiation treatments would have but her back to feeling herself.
It is frustrating. With the radiation, they said 2 weeks of exhaustion…. Mom was a bit depressed that two weeks came and she still felt lousy. However, they did go for a very high treatment dose and once 3 weeks hit, every day after that was grealty improved.
At 5 months since treatment, she’s walking everyday and just spent a weekend babysitting for 5-year old twin grand daughters. I’m cancer free, but the energy of the girls might be beyond my capabilities. She thrived having them.
I worried that we’re going “chemo free” until we see a progressive scan, movement on bloodwork, or until she starts feeling symptomatic. It’s so tempting to say shouldn’t we keep killing/shrinking as much as we can. However, I am starting to understand that chemo is nasty stuff and we need to balance its curative properties versus the toll it takes on the body. So, at this point, going along with the doctor’s advice to enjoy life, and wait until next tests in Sept .
Best wishes for a speedy recovery from symptoms…
Catherine
Dear Sara,
I am so sorry for your loss, but also thankful that Nicole’s passing was peaceful. Those of us who have close family relationships are so blessed; your support and love for your sister touched us all. I will be thinking and praying for you, her son, her husband, and all of your siblings.
Love and hugs,
Catherine
Hi Jane,
My mother was diagnosed with ICC in Oct 2013. She has one tumor (4×6 cm) that they went in to remove, but weren’t able to because of its location (parts spreading to the portal vein).
After recovery from unsuccessful surgery we we through 3 cycles of gem/cis chemo, and then in Feb 2014, she had radioactive seeds placed directly into the tumor (SIRT). The chemo shrunk the tumor 20% and the radiation did kill central parts of the tumor.
Last scan in June showed all stable- next scan is in Sept.
Unfortunatley, the only “cure” I have heard of is if they can remove it. However, just over the past few years, threatments are improving and you are reading about more people who are surviving longer. My mother was told very dismal survival statistics, but at almost 10 months from diagnosis she is feeling great. We are taking lots of vacations and spending as much family time as we can. E
So far, one regret we do have is that we should have had a port put in right at the beginning. We were thinking 3 cycles of chemo, her veins would be ok, but there will be blood work and injections for scans, and the chemo does make the veins more brittle. She went through much pain and anxiety that we could have avoided.
I am very sorry your Mom and family have become part of this group, but we are all here for you.
Catherine
