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Life & treatment surging ahead - lots going on

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

The generosity of family, friends, and in particular others in the CRC community have just blown me away! I am so blessed to have you all in my life. My new bed has been ordered. I laid on one like it while the paperwork was done last night. After a day of laying for two separate planning scans (and setting up two separate body frames) my pain levels were quite high. Laying on my current bed only makes that worse - sitting up with a chair that has a low back is my best situation. But laying on that sleep number bed, adjusting the head and feet to the "zero gravity" position, and taking the mattress down to 35 was heaven! I told the salesman I was going to sleep in the store each night until they deliver my new bed! ;)

Actually I will be spending a lot of my nights at Hope Lodge at the U of MN until my new bed arrives. I think the room has two twins and a recliner. I will probably sleep in the recliner if it works out. If any of you have ever donated to the American Cancer Society, this is one of the programs they support. They have Hope Lodges near many major cancer centers, and patients (and one caregiver) can stay for no charge. While I am not that far away from the U of MN, I am just far enough that especially this time of year (with football games starting and the State Fair starting), the commute takes a long time and is very stressful - not a good thing when in pain, fatigued, and on pain meds (I need to take them to be able to lie in the right position for radiation). I will save on gas, stress, and parking (even with my ticket validated, yesterday cost me $9 - without validation it would have been $22).

The Tomotheraphy machine they are using is the only one in our state (Mayo doesn't even have this). It is in high demand and requires a lot of set up time and work for each patient - and more-so for me with my situation. There is a high risk of paralyzing me if this isn't done exactly right for the largest most active met at T6. They are also treating T1 and T2, my shoulder and my collarbone. I don't think they can do anything about T5 - it has had a lot of prior radiation, and that met is smaller than the others. They will have the planning done and do my first treatment next Wednesday. I will know then how many treatments I need and if they decide to do all my treatment on the one machine, or if I will have just T6 done on that machine, and the rest on a separate machine, requiring a separate appointment. That was the original plan, but they are now working towards doing everything on the Tomo if I can tolerate the needed position long enough.

I have an appointment next week with a medical oncologist there too. It is time to try to move to a major cancer center where I get full input from medical oncologists, radiation oncologists and surgical oncologists - not just my medical oncologist who is very good, but focuses almost exclusively on chemo (other than initial resection). They present each patient's situation to a the full board once per week, and have access to a lot of equipment, trials and studies. Plus my primary clinic and primary hospital are in their system, so I wouldn't go through any more confusion trying to get all the needed records between doctors. If I have labs in my suburb, any doctor or hospital within the system can pull them up. I'm hoping they can make a plan that works for me not to have to go to their location more than once per month - but use my primary clinic for labs, and my primary hospital for infusion. I'll find out more next week.

I also want to switch to a major cancer center because of the uniqueness of my situation I still cannot find a single case like mine of never having any organ involvement at all, yet getting bone metastasis. I wonder if there is any possibility of a 3rd primary, or if there is something else unique about my situation that would warrant treating it differently than the more standard protocols. At a research and teaching facility they are more likely to dig deeper into this for me.

Varmint5's picture
Varmint5
Posts: 384
Joined: Feb 2012

Hi Kathryn,

Glad to read you have a plan in place for this new development. My daughter is friends with a young man also from our small town (pop. 4500), one of five in her age group (30's) from here currently battling colon cancer. He was stage III but now has scattered bone metastases, also no other organ involvement, like you. He recently returned from Mayo for a third opinion and is going to do Folfiri with Erbitux. All doctors he saw agreed with this treatment for him. He said that the Mayo Dr. also had a "plan C" but did not mention what it is. I have read good things about the tomotherapy and wondered why they had not mentioned it to him.

My daughter is now in treatment in Tulsa at the Cancer Treatment Center of America. They do tomotherapy there. She doesn't need it, just getting chemo for now.

Best of luck to you - if you want me to I can try to put you in touch with this young man. Just send me a message.

Sandy

taraHK
Posts: 1961
Joined: Aug 2003

Thanks for the update. I'm so glad everything is falling into place for you. Good luck with the tomo.

Just FYI, I was diagnosed Stage III rectal. I did have a few lung mets but that was years ago. I now have bone mets with no organ involvement (eg liver, lung). It's unusual...

Good luck. Thinking of you all the time

Tara

steved
Posts: 836
Joined: Apr 2004

I think when your situation is a complex and outside teh standard presentations then getting a more specialist opinion whithin a larger centre is necessary- within that team they would hae seen a treated similar presentations more often than your local centre so whilst they may not say anything different you can be confident that everything possible is being done.

Interesting to read about tomotherapy- not really heard much about it and not sure wht the evidence is beyond normal external beam therapy though I guess in you situation where they are neat the spinal cord, more focused therapy is a good approach.

In the meantime- enjoy your new.It is those little things in life that come to mean so much to us and will be definitely moey well spent (looking at a tempur mattress ourselves as think again money spent on getting good sleeps will pay us back many times over.

steve

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