dukenukem
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This is one thing that I don’t think I’ve convinced my onc on. I will never be stronger than I am now, so now is the time to be aggressive and find out just what my limits are. We can always back off later as conditions dictate. I’m concerned if we slow down too early, we can never regain the lost ground. As to whether or not I should expect an improvement, the only way to find out is to try. Easy to say now, ask me again in six months.
Duke
Hope you are not traveling through O’Hare on the way home. Major issues resulting in flight delays and cancellations.
If you can’t keep down chicken soup, warm, flat ginger ale is the next best thing.
So, you had no trouble with your local clinic/hospital administering the treatment plan developed by Dr. Javle? I am running into a little unhappiness here simply because I was going to see Dr. Alberts at the Mayo Clinic for a second opinion. Fortunately, his opinion matches (for now) what my onc is planning (after some pushback from me on her first plan).
Duke
Fourteen months after I was diagnosed my onc sent a sample to FoundationOne. Not sure why she waited so long; I had asked about it months ago after reading about it in the Boards. It could take up to three weeks to get results back.
One thing I learned at Mayo is that the standard testing is the solid tumor panel. I was advised to also get the hematology panel testing done to look for a specific thing – FGFR4.
Chances of getting a match back are small, but if you get lucky, you will be able to get a specific treatment plan with a higher probability of success.
Duke
One opinion I got at Mayo that surprised me was that the pharma companies are looking more into CCA than I had believed. Not so much at new treatments (starting from scratch is expensive), but getting approval to apply existing treatments in new areas. If they can get them approved in new areas it helps their reputations (and bottom line by being able to sell more). The opinion/hope was that this is where a major breakthrough would come. And combine this with genome sequencing to selectively treat patients instead of the broad brush approach.
Duke
Stats are just that – numbers and probabilities. Without seeing the entire data set you have no idea what went into the curves. Without being given the statistical deviation you don’t have the complete picture. These are averages. Here is an analogy:
You are shooting at a target. All ten arrows are spread an even distance around the center. On the “average” you shot 10 bulls eyes. That is considered “accurate” but will have a large standard deviation.
On your second attempt, all ten arrows are clustered in a circle two inches across, but five inches from the center. That is considered “precise”. And will have a low standard deviation.
Neither will get you an award, but at least the second one can be easily corrected by changing your aim.Bottom line, like Gavin said, is not to get wound up too tight about averages. All you can do is your best, aided by the best the doctors can do. Maintain a good attitude, hold your head high, trust in God, and live the best life you can. Sounds like a good plan regardless of whether or not you have cancer.
Duke
Marion –
No. that was part of an email that Julie received from a “Patient Navigator” at the Mayo Clinic that she forwarded to me. I will forward it to you.Duke
I am not a candidate for resection. I started with eight rounds of carbo/gem then went to gem only for about 10 rounds to take some stress of liver and kidneys. The main tumor in my liver decreased from about 18 cm to about 11 cm with carbo/gem and help steady for the first eight rounds of gem only. It increased slightly over the last 2-3 rounds of gem only. I am going back to carbo/gem because it worked. When it no longer works, I will explore other alternatives, probably going to second line treatments, then eventually to a trial if I can find a suitable one at the time.
Duke
I second the recommendation on the Mayo Clinic. I just got back from meeting with Dr. Steven Alberts to get a second opinion on my continuing treatment. I am not a candidate for surgery so it’s a matter of which chemo I take. His attitude is fairly aggressive which matches mine. He has a tremendous knowledge base. My oncologist is not as aggressive and has a very limited patient base to draws from. The Clinic is first-rate (with a few issues to be expected from a clinic with over 30,000 employees). That’s right, over 30,000 – just in downtown Rochester, MN.
If you do go there, the Clinic has a concierge service to help you plan your flight and hotel room. Use it (translation – don’t wing it like I did and make it much harder than you have to). I’ve also heard that there are some very inexpensive motel arrangements if you plan more than two Fridays in advance. If you fly into Rochester MN there are some (not all) nearby motels that have free shuttles to the airport and to the Clinic so you don’t have to rent a car.
I attached a copy of the Guest Housing list that we maintain. All of these options are great places to stay—patients particularly like the Nazarene Well House and the Mennonite guest home. These options are much more cost effective than many of our hotels.
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Following is from an email by Iowagirl:There is one other option that is brand new for our Rochester area. In fact you are the first patient that I have shared this with. The American Cancer Society has partnered Nationally with Extended Stay of America hotels. Through this partnership patients will have reduced lodging options. There is some restrictions/rules that you need to know about—you must call 1-888-227-6333 to have them book the room for you—you can’t call the hotel directly.
~The rooms are only available Sunday-Thursday.
~Room rates vary depending on patients income—either the room will be free or it will cost you $12. The representative will verify your income when you call to make check on room availability.
~You will also have to plan ahead for this program. They need at least 2 Fridays (not 2 weeks) advanced lead time to process your request.
With the 2 Friday lead time this might not work your for first treatment if you make it up here for your day 8 treatment, but you can use this for any future treatments where you can plan ahead.One other thing—if you haven’t already applied for financial assistance through Cancercare I would encourage you to do so. They will help with transportation cost related to treatment.
http://www.cancercare.org/financial
________________All that is simply mechanics. What you and your sister have to focus on is a positive attitude. The best treatments in the world will not give you the best results unless you have a positive attitude. It is a struggle to keep up a positive attitude – by you and your sister and the rest of her family. Some days really suck. You (all of you) just have to get over it and fight on. You will read in these discussion boards stories that will make you cheer and some that will make you cry. Stealing from Lainy and others, this is a roller coaster. The highs are breathtaking and the lows are unbelievably painful. But these are the cards we have been dealt. Play them the best you can. Treat every day as a miracle and make it count with no regrets.
It will take days to go through the information in these Boards. Use the Search feature. Send emails to people directly if you don’t find what you need. We are in this together. When we get word of a success, we all celebrate. When one of us loses, we all lose a part of ourselves.
Sorry, I get a little preachy on this. But, if you don’t fight with everything you have, you will always wonder “What if?”. From your statements on going anywhere and doing anything, that doesn’t seem like a problem. Keep that in front of you at all times.
Duke
Sennakot S was my best friend for a while. I would hav e a chemo treatment which would bind me up. So I learned to anticipate it by taking Sennakot S the day before. See if there is something cyclic that can be worked around.
Duke
My experience is similar to Julie’s. Lat week I could not think of the word “hotel” but “accomodations” came right to mind. Go figure. I’ve been through eight rounds of carbo/gem, then 10 rounds of gem only, now back to carbo/gem.
As far as emotions go, I was on a roller coaster (going downhill most of the time) for about the first six months. I had my own “pity parties”. Got control of that, for the most part. However, “perky” is one word that most people will not ascribe to me. Best I can hope for is “not as cranky as he normally is”. This disease is particularly hellish for a perfectionist.
I don’t know if carboplatin is easier than cisplatin. See what your onc thinks.
Duke
I did not have a resection, only chemo. I lost almost 35 pounds in five months before I started putting weight back on. A year later and it’s all back. As Julie said, small snacks (grazing) seems to work best. I concentrated on what tasted best, with nutrition as a secondary consideration. I used Kellog’s ToGo, others like Carnation Instant Breakfast. Whatever works is the best answer. Her tastes may have changed, so don’t be afraid to try new foods. Maybe even add hot sauce to put some zip into things.
Most hospitals have some sort of nutritionist on staff to help you. Take advantage of that.
This is a long road. It will take time to get your mother back to where she wants to be. Keep your spirits up and look for a miracle each day. They are out there, waiting for you to find.
Duke
One thing I’ve discovered, unfortunately, when you ask for records to be sent elsewhere, they are not always sent. Nor are they always processed properly if sent. Nor can they always be sent electronically (sometimes they will only make hard copies). And don’t be surprised if records are not centralized but kept by each department, oncology, radiology, pathology, and that you have to talk with each individually to get copies.
Message: Never take anything for granted. Best bet is to get your own copy. Upload them to the Cloud or wherever you can retrieve them from any location. Keep a copy on a flash drive. More work for you, but “if you want it done right, do it yourself”.
I asked Mayo Clinic if they used a dropbox and they said “no”, doctors review the material just before the visit so there is no use sending it early.
Duke
“Full guns blazing” – The Duke likes the sound of that. That’s the attitude I am trying to stir up in my onc with limited success. After 14 months she finally suggested FoundationOne testing.
Like Lainy said, this is THE place to get the best/latest info. Make use of the Search function. Check out Gavin’s posts on the latest technical reports. Keep notes of what you find and where – make liberal use of Bookmarks to find stuff later.
As much as oncologists can tell you what you might expect, we are living it 24×7. Come to think about it, I’ve never come across a physician here with CC. Maybe that’s the secret – become a doctor.
Duke
