There is a standard treatment path for GBM. whole brain radiation with temodar, then a few other choices on recurrence. Any regional hospital / cancer center can do this.

If your family wants to get more aggressive, they have to get into one of america's cancer centers. For GBM, I remember UCSF, UCLA, MD Anderson, Duke, Sloan Kettering, Boston Women's ( Mayo never came up for GBM in my research but maybe I'm misremembering ). My method for finding these centers is to scrub the clinical trials database and see who is offering what trials.

In terms of how to ingest all the data --- I'll tell you what I did. I sat in UCSF's library for two days and read like a demon. I read all the articles on GBM going back 20 years, and when I didn't understand a term of concept, I pulled a textbook. As a "hacker" you'll find drilling down on one disease isn't _that_ much information. I was then capable of having realistic and high bandwidth discussions with all of the doctors involved, including some of the nations premiere neurooncologists.

Right now, interesting clinical trials focus around immune system treatments (monoclonal antibodies). That wasn't around when I did my thing, and my info is all out of date.

If you live in the bay area, you might have a friend at Genentech. You should scrub your linkedin friends. They're at the front of most oncology research, and main HQ is at the oyster point office.

Your local doctor(s) won't like moving to a regional cancer center. It's a terrible fact, but they'll tend to drag their feet, tell you won't get personal service, make record transfer difficult, and claim they can do the same treatments at home. Part pride, part truth, part profit motive.

Thanks for your advice, she lives in France, but I will try to see what is equivalent there, as well as what medical trials are ongoing in such institutions.

This page from Expertscape will help you find the individuals in those institutions who know the most about GBM.

http://expertscape.com/ex/glioblastoma/c/fr

The page is not perfect (e.g. the top person is at Harvard, not in France, and the second person ranks high because of a clinical trial), but it's probably the most efficient place to begin your research.

http://www.gustaveroussy.fr/

Did you attend or find any support groups and were they useful to you? If they were can you point OP to them, as you know the ones in the domain. I know that in my personal case they made a big difference.

I found my local doc was awesome when I got a second opinion from Mass General and then moved treatment to a major regional center in my local town. They moved very quickly and were cooperative. So didn't have a bad experience there personally, but YMMV.

That being said, Grade IV gliomas are usually being treated with a combination of surgery, radiation and chemotherapy (usually temozolomide). Surgery is either a biopsy or a resection. Glioblastomas have multiple "roots" making them very difficult to remove. Even after surgery they almost always recur. Sometimes they're located in regions of the brain where the risk of surgery outweighs any benefit (for example, the patient would be left unable to talk after the surgery); then we do a biopsy and go on to the next "step", which is radiation.

Radiation therapy is given daily over a few weeks. Based on a few factors such as age and general condition, the radiation oncologist will determine the dose and number of treatments (fractions) he recommends. Between 15 and 30 treatments is usual in patients that are in reasonable shape.

Again, based on general condition and a few other factors, someone (a neurosurgeon, medical or radiation oncologist) will prescribe temozolomide. It's usually given during or after radiation. That medication really improved outcomes and is now considered standard of care in people that can tolerate it.

Despite our best efforts, the disease usually comes back. At that point options can be limited. Some people will try clinical trials, but before you start travelling with a loved one across the country, keep in mind a few important things: this is a deadly disease so quality of life becomes very important. Spending hours in hospitals trying out toxic treatments has an important impact on that. Moreover, I haven't seen any breathtaking preliminary clinical trial results on GBM lately (that includes virus, weed and the likes). Participating in trials should be seen as a way to contribute to cancer research; I wouldn't go into it expecting to find a cure.

If you really want to have access to the information physicians use, you should check out the NCCN guidelines on Central Nervous System Cancers. It's NOT written for the general population and I would not advise you to even look it up. It can be really confusing and bring in more stress than it's worth. As I said on top here, better talk to a physician.

I hope this helps.

Were it me or a loved one, my first criterion for a physician would be their view on quality of life and palliative care.

The therapy consists of irradiation with heavy ions, which have two important helpful characteristics: a) they cause more severe cell damage, making therapy of some radiation-resistant tumors possible, and b) their damage is extremely localized in a so-called Bragg-peak, which means you don't have to destroy every cell on the path to the tumor.

Since it is a beam of charged particles, magnets are used to rasterize the tumor, irradiating only the exact tumor location and very little healthy tissue.

Unfortunately, a massive fuckup in the German health system has led to a situation in which there is currently one center that treats patients (HIT in Heidelberg), one completed center that can't go into operation (!) and there will be no new centers built for a few years to come.

The center in Heidelberg is understandably overrun with patients and only young, healty patients with inoperable brain tumors are treated (the precise localization of the cell damage allows for irradiation of tumors close to the eye or the brain-stem).

http://www.ro-journal.com/content/9/1/88

http://www.nejm.org/doi/full/10.1056/NEJMoa1402121

B) contact the IRB or clinical investigations department, they probably need to verify their institutional existence and will then have a list of whichever investigators they have vouched for.

C) ask on reddit: /r/bioinformatics

D) they have contact info on the website.

He was 32 at time of diagnosis, he's an inspiration to me every day to persevere through any of my struggles that I perceive as difficult.

My advice, which was my sisters strategy in keeping her husband alive, is to get as many opinions as possible about the most aggressive treatment strategies available (depending on tumor location, etc) and formulate a plan to try and eliminate as much of the tumor(s) as you can. The occurrence rate on these grade tumors is insane, try anything you can to get into an amino therapy clinical trial, or any other trials that they may be eligible for. My brother in law participated in the MK-1775 trial.

I built a little WordPress site for him: youcanthurtsteel.com

Please email me, or message me if you have any questions that I can answer from my perspective & I'll do my best to convey what my family has learned about this terrible disease.

Here's a youtube clip: https://www.youtube.com/watch?v=8Fo2uNqKMR8

Also, http://www.voicesagainstbraincancer.org/ is one of the best foundations that you can help raise awareness for. He's become an advocate for their cause, http://www.voicesagainstbraincancer.org/james-j-hanson-bio/

Your friend, Nick

Looking forward to hearing from you!

> Another question would be, how to find the best specialists in my Area for this kind of cancer?

I used to work in finance helping analysts evaluate biotech stocks, and one of my responsibilities was identifying thought leaders in the field and setting up consultations with them.

On metafilter someone asked a question "Let's say you wanted to find the very best ovarian cancer specialist in the US. How would you go about doing that?", and I answered[0] with the kinds of things I would do for my job. It might be helpful for you.

[0] http://ask.metafilter.com/267385/How-to-find-the-best-doctor...

2: Understand that most care givers will provide advice based on their circumstances. For example, a radiation oncologist will tend to discount surgery and will tend to advocate the machines they have access to and experience with. This is ok, but you need to keep this in mind when deciding treatment.

3: Select a care giver who will quarterback. It is imperative that the patient trust and respect this person. It is imperative that this doctor understands the patient's goals for treatment.

4: Have an honest conversation with the relative about how far they are willing to go and what their main goals for treatment are. What's more important: quality of life or a cure?

5: Get all legal affairs in order right away, such as a will, medical power of attorney, etc. Decide on end of life care before you get there. Assign a trusted person to act when patient is unable to. Get all paperwork signed, and file a copy with all care givers and institutions. Make sure the family understands what the game plan is and who will be calling the shots.

6: Get a folder and put paper copies of all relevant documents in it, to include legal docs, test results, etc. Always get paper copies of all test results, etc. Always have this folder with you. Allow doctors to make copies as needed, but do not give away your only copy of any document. It's amazing how this one thing facilitates communication between all of the care givers.

Clinical Trials for Adults | A Phase I Clinical Trial for Recurrent Glioblastoma Patients Opens for Accrual at the Preston Robert Tisch Brain Tumor Center http://www.cancer.duke.edu/btc/modules/research3/index.php?i...

What '60 Minutes' Got Right And Wrong On Duke's Polio Virus Trial Against Glioblastoma http://www.forbes.com/sites/davidkroll/2015/03/30/60-minutes... http://www.cbsnews.com/news/polio-cancer-treatment-duke-univ...

Targeting Protein Synthesis Control for Cancer Therapy http://neuro.surgery.duke.edu/gromeier

Matthias Gromeier, MD | Duke Neurosurgery http://neuro.surgery.duke.edu/faculty/details/0238844

Some (rather basic) links from me:

https://en.wikipedia.org/wiki/Immunotherapy

https://en.wikipedia.org/wiki/William_Coley

I was diagnosed with stage iv colon cancer a little over a year ago. I was in shock and emotionally completely numb, or so I thought. I started having anxiety attacks, but I didn't know what was going on - I thought I was dieing right then.

Eventually I wound up at the hospital where, after vitals and an interview about what I was feeling, they suggested what was really going on for me mentally and emotionally.

I now have anti anxiety medicines (Xanax) and I can tell when they're needed. I'm grateful for getting the psych support.

Ok, long winded, but basically a lot of what we deal with is made in our minds, and there is help available to mitigate the worst effects of this.

Good luck, and thanks to anyone here that works in the medical field, battling these diseases.

The PVS-RIPO trial is available for recurrent glioblastoma patients with only one tumor. The tumor must be surgically accessible; the size must be no smaller than 1 cm and no larger than 5.5 cm, and the tumor must be located at least 1 cm away from the ventricles. Prior exposure to bevacizumab (Avastin) is permitted. For further information please contact the Preston Robert Tisch Brain Tumor Center at Duke at (919) 684-5301.

http://www.cancer.duke.edu/btc/modules/Research3/index.php?i...

Note: most clinical trials have other requirements such as age, gender, health condition, failed/doing/discontinuing other treatments, so it requires some persisence and research.

See also:

http://killingcancer.vice.com

https://www.clinicaltrials.gov/ct2/show/NCT02209376 (Novartis + U-Penn + UC SF)

http://neuro.surgery.duke.edu/research/basic-research/duke-b...

I'm no expert, but in your shoes I would be looking for the most experienced panel I can find, hopefully with neuro specialists preferably (e.g. a neuro-radiologist, neuro-oncologist, etc. as specialists). If there is a teaching hospital with a good reputation in your area they may be more current on techniques than a purely clinical one (but this isn't hard and fast). Don't ever be afraid to ask questions, and keep at it until get a clear explanation of the panels reasoning behind their suggestions.

Best luck to you and your relative.

> is there any tool out there to compare what works vs what does not work as well

That's what the medics really do. Get good medics and thrust them, but don't thrust them blindly. Read a lot to be able to understand the medics and the tradeoff they are making. [They are always making tradeoff.] Ask a lot of questions, dumb questions, intelligent questions, lots of questions. [But remember to be polite asking.]

Don't believe everything you read, it's full of snake oil written by crackpots and overhyped press releases written by universities.

I'll start with Wikipedia and MedlinePlus, to get a high level overview.

[And remember to sleep and eat healthy, you will be more helpful if you are healthy.]

Best luck to you and your relative.

> and while there's literally tons of information online about treatments and procedures, how would one go about digesting it all ?

This is actually a problem for practicing physicians as well, as knowledge transfers slowly across the industry. Many professional societies (American Heart Association for example) try to address this problem by releasing clinical practice guidelines which are suggested best practices for managing different diseases. You should check if the American Cancer Society or another equivalent group issues such guidelines.

I would also strongly recommend consulting an oncologist or a neurologist, who will be able to point you towards the best treatment centers in the area and the best treatment options.

Interestingly, while GBM and gliomas have been highly resistant to traditional treatment, much of what is known about the demonstrated ability of cannabis to fight cancer comes from research conducted on GBM and glioma tumor cells.

Scientists hypothesize that because brain cells have the highest concentration of cannabinoid-binding receptors in the body, brain tumors also rich in these receptors may respond best to cannabinoids (chemical compounds such as THC and CBD as found in cannabis).

http://www.cbdfarm.org/glioblastoma-and-cannabis-oil.html

See for yourself how THC selectively kills GBM cells while leaving normal cells alone by watching this time-lapse video taken from an actual human tumor.

http://www.cbdfarm.org/blog/medical-marijuana-news/cannabis-...

http://www.medicaldaily.com/cannabis-shrinks-brain-tumors-as...

A better bet is to find an expert who has digested all that information, and use him or her as your guide. If you are not confident in the knowledge base carried in the brain of your relative's current doctor, you can find out the people in the world who know the most about GBM by looking here:

http://expertscape.com/ex/glioblastoma

Disclosure: my cousin developed Expertscape.

Start right there:

You need to find people who have gone through what your going through. Im sure some of them have already parsed this information, and would be better suited than any of us in helping to sort through it.

As for finding specialists, your current doctor, and the people he recommends are your best bets. The medical community is a strange one, and "best" is a hard term to qualify. The best doctor might have the lowest rate of curing paitents because they only take on the worst cases. The "best" doctor might be the one who understands the outcome and makes sure that your treatment matches your lifestyle and acceptance of outcome (time here vs quality of life).

Find those support groups, really go find them and USE THEM. They are going to help you and yours in a time that is going to be really rough to get through. If you knew me personally the fact that I was telling you "go find a support group" would probably shock you, as Im not the type of person you would expect to recommend or attend such a thing. They will help you, it will be hard, its going to suck, but you should do it!

From everything my wife and I could find, there is no such clearinghouse that is publicly available for what is the "best info," or for readily comparing studies. Because the research on treatments is changing so rapidly, it really does take a scientist (read: your oncologist) to filter through the different papers and compare the stage-based 5y EFS rates, review risks of that treatment, and figure out the pro and con to your relative's situation to determine the best treatment protocol.

This is further complicated by the fact that not all protocols and studies are publicly available. Some groups actively hide information from public view to prevent the "Web MD" effect. The treatment protocol we ended up with for my daughter is widely used and studied in some countries, but was never before used at the hospital we were at. We felt very comfortable with it when we reviewed the literature with our hem/onc, but as the doctor was part of a particular oncology group that shares research and studies, only they could find the critical information. At one point I was looking for more in-depth details, and because of the restrictions by the oncology group, our Dr had to be very careful about what they could and could not show us. I could read some studies in their office on their screen, but could never get a copy of the PDF.

Trust in your medical team. If you aren't getting the information your family needs, ask for more. If you still feel like you aren't getting enough information, then maybe re-evaluate if you have the right medical team.

Now, all of this is written as if you get to have contact with the medical team. If the close relative doesn't want you to have access, please respect their right to pursue the treatment your relative and their doctor have selected as most effective for their highly individualized case. Support them in their quest to get the right information, but don't pry and second guess. I come from a family of medical scientists and medical professionals, and believe me, there can be a very fine line between curiosity and help, and prying.

Good luck to you and your family.

Cancer(s) are different than athletes foot in that sense. You can look picture up on webMD, diagnose yourself, go to the drug store, and buy OTC medication to treat yourself.

You can't do that with brain cancers.

As an aside, my mother (who I did post about on here once under a throwaway) had stage IV brain cancer — the complexities of I'm unsure of. However, she had great, great success with marijuana and it helped her tremendously. Chemo and radiation suck, but the marijuana makes it suck a bit less.

"Had"... she is in remission :)

The hardest part will be before surgery.

My advice is to take full advantage of every minute you have with your relative. The doctors are frequently upbeat and paint a picture that is not realistic (my dad thought he had another 3 years, he was gone in 6 months. My mother in law thought she was going back to work, she was gone in 2 months. The doctors should have been more realistic).

One of my great regrets is not pushing to get all my mother in law's friends gathered for a party. She insisted that she didn't want to do it "until she was better". She was "fine", bed ridden, but alert, mostly not in pain, we could have had a party. What I should have said was "That's cool, we'll have another one. Let's do two, I'll set it up". Instead I folded and I regret it too this day, I'm a weird dude, I actually loved my mother in law, she was a cool lady.

tl;dr: go see your relative NOW. Hang out, drink some wine, tell some stories, or just hold each other.

And then you'll see this links to a lot of more detailed articles about particular conditions.

I used it when my mom was in the hospital and it was very useful. I was able to get access at the local university library and then export all the useful articles to PDF.

https://www.nice.org.uk/

http://www.cochranelibrary.com/

All the best to you and your family.

Check it out: http://www.foundationmedicine.com/

-Warren

My mother was diagnosed with glioblastoma. She had the "standard" treatment, surgery to remove as much of the tumor as feasible, radiation and chemo. In the end, she passed away in about 4.5 months from her initial diagnosis. The doctors had originally given her 1-2 years; I don't know if that was just an optimistic estimate in order to give some hope, or whether my mother just happened to be one of the cases which didn't survive the average estimate (everyone can't beat the average...).

Due to other life circumstances, I didn't have that much opportunity to research the issue, but my takeaway was basically that you can group stuff you find on the internet into 3 groups: A) research, results which may be inconclusive or at least not dramatically better than the standard treatment B) desperate grasping at straws, typically by patients or their kin, not experts in the field C) scams prying on the emotional anguish of the affected persons. So my conclusion and recommendation would be to trust your oncologist, and/or if you want another opinion, ask another oncologist. Unless you're an expert able to distinguish the wheat from the chaff, don't put to much trust into whatever you may find on the internet. (FWIW, I have a research background, although not in medicine; YMMV.)

Beyond the medicine and treatment thing, a few other points:

Realize that glioblastomas have extremely poor 5-year survival rates (or however you wish to measure it). While a positive attitude is always important in dealing with any serious disease, the bottom line is that, most likely, your relative will pass away within a couple years. There is no miracle cure.

IOW, perhaps rather than obsessing over whatever cures may be brewing in research labs, focus on your relatives quality of life for whatever time she/he may have remaining. Also keep in mind that brain cancers are nasty in that they can change the personality of the patient, and towards the end they can get more and more incoherent, sleep more and more and eventually go into a coma. So if you have something important to say to or discuss with your relative, do it ASAP rather than wait until it may be too late.

My family, including my mother, took solace in that she had lived an almost full life, she was on the verge of retirement etc. I can only hope that your relative is also older, for a younger person I can only imagine how utterly devastating and hopeless it must be.

Best of luck to you and your relative.

I know it feels productive to start reading as much as you can about the disease pathology and treatments, and it won't hurt to be more informed, but for a stage IV GBM, your time would be much better spent trying to get hooked up with the best docs in the country. It's a terrible thing to deal with and some doctors have spent decades immersed in the research and literature -- let them be the experts but make sure you find someone who can give your relative a chance.

If your family member is interested and willing to travel, it would be reasonable for them to ask for a second opinion at one of the major cancer centers and/or to ask if there is a trial in which they might participate.

If your family member wants to stay local, then I'd still ask their oncologist if there is a GBM specialist in the area whom your family member can meet.

Most physicians will advocate the treatments that offer the best hope and prospect for survival, often overlooking the terrible cost to what time the patient has left.

Please don't lose perspective on the most likely outcome while holding out hope for the best.

So don't find a treatment, find the best cancer treatment center you can get the patient admitted to.

Their GBM specific list is here

http://braintrust.org/groups/gbm/

Edit:spelling

https://www.fredhutch.org/en/news/center-news/2014/08/Gliobl...

http://health.usnews.com/best-hospitals/rankings

Castle Connolly to find the best doctors. A small fee but worth it.

http://www.castleconnolly.com/doctors/

The research topics they are (or were) looking into is actually Glioblastoma. Apparently as a cancer, it has an extremely complex protein, rna, dna pathway that is bidirectional, making it one of the most complicated and dirty big data sets out there. There are also a signfigant number of problems with Glioblastomas related to computer vision, dosing, ect. Either way, Microsoft research Cambridge/new england does a lot of research on Glioblastoma.

So for example: this paper on stiener trees for big data research was used to find new protein markers for glioblastoma - http://research.microsoft.com/en-us/um/people/borgs/Papers/P...

Those protein markers may/may not be in early stage development for drugs - it is worth asking around about this.

Here is another about imaging in the brain:

http://research.microsoft.com/apps/pubs/default.aspx?id=1643...

If you have contacts there, this would be a good place to go hunting for help.

Other things:

get help for you. This is stressful for you too. You may be healthy, but you do have worries, thoughts, and feelings about the future right now, and they deserve to be heard out and understood to the fullest for your own health. Do something about it in advance. It isn't selfish - if you are involved in the care of this relative, you need to be able to care about the highest quality you can, which means making sure you are taking care of yourself.

Call the big research hosptials for this type of cancer, and find out the name of patient advocate groups, and people who are allied. These groups usually have conferences, chat boards, email lists, ect. They host them where ever (facebook, websites designed for patients to come together, private websites they built themselves, google groups, what have you, don't expect awesome). They often pass around papers, studies, ect, among themselves. They talk about life issues. They'll be able to share some of the stresses you're going through in ways other people might not.

Warning: it's a subscription service.

(See my comment below for context, currently undergoing chemo). Just wanted to comment that I'm a huge fan of Genentech. They developed Ritiximab (Rituxin) which I'm currently getting treated with. It's a monoclonal antibody as you mention and it's improved outcomes for my condition (DLBCL Non Hodgkins Lymphoma) by around 15%. It's given in combination with traditional 'CHOP' chemo and is called R-CHOP. It's also insanely expensive - about $5K per dose and I get 6 doses over 18 weeks.

I found my local doc was awesome when I got a second opinion from Mass General and then moved treatment to a major regional center in my local town. They moved very quickly and were cooperative. So didn't have a bad experience there personally, but YMMV.

We're soon going to release a feature that will allow community members to unkill dead comments, so fixing this kind of situation won't depend on mods happening to see it for too much longer.

The only reason we knew about this to fix it was that a user helpfully sent an email. Please, everybody, follow the guidelines and let us know about problems that way, rather than complaining about them in the threads. It's physically impossible for us to read all the threads.

People on HN are quick to conclude that accounts are banned when they're not. That has been a local pastime for years. If some software we've been writing works as intended, though, this will soon change for the better.

But that's just not true though is it. :( In the past, rankbans have been given out rather spontaneously it would seem. Even to folks who one would not deem are problematic (like larrys, mindcrime, DanielBMarkham, etc.).

Anyway, it's fine.

I don't know much about GBM, but I wanted to give you some general advice. My first oncologist seemed great, but my wife pointed out that he was 'interviewing for the job' and there is no reason to not find the best available doc. So I googled like crazy, found a few great lymphoma clinics and settled on Mass General in Boston after chatting to them on the phone. I flew out there (6 hour flight) and spent a week getting a second opinion including PET/CT scan. It was so very very worth it. From the amazing doc there I got a referral to a world-class local clinic and well known oncologist in my local town and started treatment within a week.

So I'd encourage you to A) Move quickly, especially if it's aggressive and B) Get a second opinion to make sure you get the best treatment available.

It's actually difficult to do both. But what I found is that the first oncologist I worked with was actually not moving as fast as he could have. The local hospital had about a 9 day wait time for my initial PET/CT scan and my doctor could have scheduled it a day or two earlier but he just didn't get around to it. By flying out to Mass General I got my scan earlier because there's less of a wait and I got a doctor and team who move very very quickly.

With what I have (DLBCL Non-hodgkins Lymphoma), there are various genetic subtypes and tons of literature. I had my pathology sample sent to mass general for further DNA level analysis and ended up with a ton of literature and the doc was happy to have conversations as technical as I would like. What I realized is that I don't have the background to understand much of the literature. (I'm smart, but not in medicine) Also the percentages you deal with when you read about outcomes become meaningless because the studies are done on groups and every individual case is different. So what seems to be the best approach is to get access to the best minds in the business and have them guide you on diagnosis, interpreting results and treatment. I have now worked with three oncologists and two of them have been incredible and are world-class in their field. That seems to be working out quite well.

I would also add that it's not just about finding a great doctor. It's important to find a great team. That means: admissions nurse, scheduler (very important because with some treatments it's critical you don't miss a dose or schedule), other nurses who administer treatment and so on. The team at Mass General Lymphoma clinic is amazing. If you're reading this and do have lymphoma, get in touch with 'Mutsi' the admissions nurse, and try to get scheduled with Dr Effi Hochberg who is an amazing amazing guy and affiliated with Harvard Medical School. I'd hope that your friend can find a similar clinic that has a great team and doctor and is really great at treating GBM.

Some further unsolicited and anecdotal comments that might help your friend:

I've just finished my third cycle of R-CHOP (my particular flavor of chemo), feeling great and looks like I might actually beat this thing. Getting a CT scan in about 3 weeks to find out more.

I've kept this whole thing private except for a small group of about 15 very close friends and relatives who know. They have been incredibly supportive and what has really helped me is just talking to my friends in person or on the phone. I'm generally a very positive and energetic person and I seem to be offering them more life advice than them giving me support, but just talking about anything, whether related to the disease or just unrelated stuff, it REALLY helps keep me energized and positive and generally happy. So I'd encourage you to make yourself available without being overbearing and suggest your friend connects with those close to them and stays in touch. What I've done is send out an update every 3 to 6 weeks to my core group just letting them know how I'm doing etc and that leads to further conversations.

Also I've managed to keep mountain biking and running during chemo which is a little unusual, but it's kept me sane. Some advice I got was to not 'stop everything' while dealing with this. I don't know what your friend's physical situation is but if they can keep their life as normal and ongoing as possible it will (in my experience) keep them much more positive and energized and generally happy. Symptoms vary so much and I know this from my treatment facility and seeing the huge spectrum of physical conditions as people go through treatment - so totally understand this may not be possible. But if it is I'd encourage it.

Getting a diagnosis like this is crazy. You actually have to develop a sense of humor about it I think because it's just one of those things that is supposed to happen to other people. Not you. I think everyone has their own way of dealing with it, but for me what has worked is to have a bit of a sense of humor about it and then to focus on the problem aggressively and stay positive.

Best of luck to you and your friend.