Re: Ugh Brain Mets!
 

I think we're going to look at the Marsden as well. One of the best in the world.

Re: Ugh Brain Mets!
 

Hi All with experience of Gamma Knife.

My initial excellent response to Gamma Knife was shrinkage of the tumour that was around my thalamus from 2.8cm to 1.4cm but a few months later last two MRI scans have shown a marked change in shape and size so have just had Magnetic Resonance Spectroscopy in Bristol, UK. This is supposed to identify Active Cancer versus Necrosis so the experts can try and think of what to do next. I have now asked to be referred to Royal Marsden, London which may have other experts who can suggest something. I have recently returned from visiting Jacksonville, Florida where my lucky English daughter is working and she suggested I give the Mayo Clinic a call - do I dare go down that route that will be financially crippling.
Symptoms - double vision and strange sensory issues on right hand side of body (temperature and touch)have been the same since August so was really disappointed to discover the suspicious area has grown. Anyone have any suggestions - Hot Tub is great but I cannot live in a hot tub!

Re: Ugh Brain Mets!
 

Hi, I have not had Gamma knife but have read with interest and empathy the stories of those who have. I read that there is often a concern after several months, but this often turns out to be the processes a tumor goes through as it is dying, which I seem to remember can include swelling with some symptoms, so not actually a problem at all. I suggest you look into this, and read up the stories other women who have had Gamma Knife treatment on this forum, and maybe contact them direct.
This must be both terrifying and very lonely for you, and my heart goes out to you, but I also have a feeling maybe it is not the bad they seem to be telling you it is. I wish you all the best
Jessica

Re: Ugh Brain Mets!
 

Hi Jessica

How thoughtful of you to post a message. I have an appt on Tuesday to get results of Magnetic Resonance Spectroscopy - terrified as they never usually telephone to invite for an appt and yet the Neuro Oncologist secretary called me on my mobile so figure they are keen to communicate the results. But it is better to know than not know - I shall keep saying that all weekend.
Happy Thanksgiving to all the amazing people who post on this forum - Thinking of you all on this special day.

Re: Ugh Brain Mets!
 

Hi BevinSomerset,

I am so sorry for your ongoing neuro-difficulties and the ambiguity of what's occurring and which tx would be best must be terrifyingly frustrating. From skimming your posts on this thread, I wanted to first comment that it seems you're getting a very high level of care and are doing a great job of advocating for yourself - gotta give yourself tons of credit for that!

I had gamma knife to two brain mets in Sept 2015 at Mayo Clinic in Rochester, MN and have received a lot of care there over the years so thought I'd make myself available to you.

(women's health note: Mayo Rochester has the MOST phenomenal women's health department. ASK to be referred - unfortunately, it's still a best-kept secret. They are incredibly helpful with treatment-related side-effects and changes particular to women. I didn't realize how much better things could be. HUGE positive impact on QOL! Please pass along to folks being seen there.)

I'm very new to the brain mets world and so am not sure how much help I can offer, but happy to try - I'm always grateful to the folks who post - I learn so much and find it really helps alleviate stress.

Since dx (stage IV from the start 1/2014) I have sought out opinions at various institutions and have also wrangled with impossible question of the best time to break open the piggy bank/incur enormous debt. I hope you can use what I know about Mayo to help inform you decisions.

While I am thrilled with the care I receive at Mayo, my comment would be that as an institution, it tends to be fairly conservative and married to 'standard-of-care.' If you have access to a reputable institution in which you have confidence and still have solid standard-of-care options available to you, it may be worthwhile to exhaust those with less expense. That said, it's never too early to start the process of getting seen at Mayo. You can always postpone appointments once you've gotten on the schedule, and I've heard it can sometimes take ages to get 'in-the-door.'

If you're looking for something more like 'out-of-the-box'-type thinking, I'd focus more on finding a study and/or using the online trial listings to find a particular doctor/accredited institution doing something interesting. I have no idea about the differences in available treatments between the UK & US. Perhaps there's something offered as standard-of-care in the US that's not available in the UK? I would tend to think not, but I learn new things every day. :)

Like all places, your experience can depend on who you see. If possible, try to research who specializes in the direction you think you'd like to go - or try to get a recommendation for a medical oncologist who may be a good fit.

Regarding costs: fwiw, I've found Mayo to be fairly priced (for the US), their cost estimates for services accurate, and at times, the final costs were lower than estimated. This is not the case everywhere in the US. I've been there both covered by insurance and when paying out-of-pocket. Also, 'fairly priced' for the US may be dramatically different from the UK.

This is waaaay more than you asked for, but I figured maybe others could benefit. Please let me know if I can further help. Sounds like you're working hard to encourage things to move in a good direction & with all that's going on, that's incredibly impressive. Hoping for the best!

Mayo pros/cons - my experience is limited to the Rochester, MN campus:

Pros
- Mayo is the most patient-friendly major institution I've found in the US (and I've been to many). While everything isn't always perfect, there are things they do really well: I am consistently treated with courtesy and respect; appointments usually run on-time; they are responsive to my questions and needs; they seem to really try to be accommodating. Nicest employees, as a whole, from the top on down to the janitorial staff. Comfortable facilities
- Technically they are at the top of the game in the US. I have confidence that scans/tests/procedures are done and interpreted as well as possible. Top-of-the-line equipment, specialties, specialists, staff, training, facilities, safety protocols, etc.
- The doctors spend time with you. I have never felt rushed or left with a question unasked. I usually feel 'heard'
- Tumor board - multi-disciplinary round-table discussion of unique cases. When there's been a difference of opinion among departments, my case has been presented and I've always been pretty happy with the outcomes
- Collaborative - I've never had a doc who wasn't willing to graciously defer to and/or work with another specialty. I haven't found that to be the case everywhere
- Accurate estimates (actual costs are almost always less) and transparent costs
- Rochester, MN is actually pretty nice and very easy to navigate as a visiting patient


Cons:
- They tend to be extremely conservative and usually only entertain "evidence-based" treatment options
- Lacking in 'cutting-edge' and integrative care (although they do now offer acupuncture and have an integrative department, but I think you have to request to be referred)
- The integrative department seems to still be in its infancy
- The food and dining options are pretty disappointing. We bring sack lunch, etc. (there's a nice co-op grocery nearby & on-campus, I like the tiny cafe in Dan Abraham bldg - soups, salad bar, etc.)
- I've heard it can be difficult to become a patient
- Rochester, MN is not the easiest place to get to

Re: Ugh Brain Mets!
 

Hi All -

Sorry it's been a while since I posted...I decided to make some changes in my life. I quit my job in Washington and took a new one in North Dakota! This is closer to family and friends and I love the area and my new job. Hubby is from NoDak and he loves it! My youngest started college this year so we are now empty nesters.

Unfortunately, I still am having issues with Brain mets. The first three are completely gone, however I developed 2 new ones. The first was zapped in Oct and the second was a spot the doc was watching and it grew so it was zapped yesterday. Because of my history, I get MRIs quarterly so all was found early. Right now nothing being seen that hasn't been treated so hoping for the best. Rest of body still clean, can see bone scars but nothing active.

It makes me sad to see Agness and now Annettechen also with the brain beast! I agree with the comments on better screening. It took a horrible seizure for me to find the first mets, that was unnecessary to let it get to that point.

Hugs and love to all

Re: Ugh Brain Mets!
 

Hi DizzyDo, glad you are doing well overall, hope this latest brain met stays zapped!!

Carol Ann

Re: Ugh Brain Mets!
 

Hello everyone!

It's been ages since I posted, but just an update. I had another SRS round in May of this year to bring it to a total of 4 treatment cycles for 6 mets. The radiation onc was wonderful and I didn't need to take the evil steriods which were the worst part of me in the previous treatments. I still am in North Dakota. Since my last treatment, I have had 2 clean MRIs! Below the neck is still NED. Is the beast gone? Who knows, but I do have days now where I don't think of cancer. That is a great blessing that I am grateful for.

Like all of you, this wasn't the life I was planning, but thanks to the research and development of the HER2 drugs, I'm still here.

Best to all of you and thank you for all the support, you made this journey easier and less lonely.

Re: Ugh Brain Mets!
 

Fantastic news! Thanks so much for posting!! YAY!!

Carol Ann

Re: Ugh Brain Mets!
 

Hi DizzyDo
thank you for posting an update and good to hear that the Gamma Knife is working for you. i love to hear your news and amazed that you find jobs so that is impressive. congratulations to you. i have also moved so no longer so far from family and friends. now live in Bedfordshire and also therefore moved hospitals so now at University College Hospital London - more advanced. The double vision has reduced and having that checked on Wednesday to see if there is a reason for that - good i hope. next brain MRI and ct is THURSDAY, NEXT WEEK. I hate those scans!
Hope you all had a Thanksgiving that you wished for.
Beverley