I am starting a new thread and topic as my searching skills on the new EF disappoint (i’m still missing the familiarity/ease of the old EF, but grateful a reincarnation happened)
I was diagnosed with multiple myeloma indicating treatment in late March, have not completely succumbed to the tedium of the medical vacuum (ie filling my calendar like a goose being prepped for fois gras in the rare intervals when no doctor expecting me or treatment scheduled)
I am in the pipeline for an ASCT that should be happening in the next months. My diagnosis and treatment has been at USZ, no real complaints other than being tossed around between different doctors since the first one I had (and really liked/good rapport/bedside manner - in a very data based field of practice aka “desktop manner”) left on maternity leave and is relocating closer to her family so not returning, left mid-summer.
I have been wondering if there is any point in getting a second opinion/checking out Hirslanden, or if in reality the medicalised Hilton atmosphere may just put me off. I have an appointment for a 2nd opinion, in reality I’m not sure in my situation with first-line treatment there is much that would be different.
I’d read up as much as you can on different treatments and join any online groups (Facebook etc) on the disease which may give you more information than you currently have - especially on new treatments and clinical trials.
No experience so sorry, can not help except to wish you al the best.
Thanks for the good wishes, up until now I’m feeling pretty fine, getting in my daily run and working some - afaik the treatment I am getting is the “standard” most developed/tested for a first-line treatment of myeloma. Am thinking for now that I am in good hands at USZ, as long as it is decided they can go ahead with the ASCT (autologous stem cell transplant) My stem cells are already harvested and safely on ice in their facility.
If this plan changes (my liver has had hissy fits when they put me on the full induction treatment doses, a biopsy and all possible bloods show no underlying disease) I may reconsider and seek a 2nd opinion. From what I can tell Hirslanden is more in the business of providing hotelerie vs any difference in the treatment from medical perspective.
Decided to post in case there is someone who has experienced cancer care at Hirslanden vs USZ
I have no experience with either Myeloma or Hirshlanden.
It seems your treatment plan is well established now at USZ. Perhaps for your own peace of mind you could discuss with the people at USZ how certain the diagnosis is and the treatment options and the value in their opinion of a second opinion - based on that you could decide what you wish to do.
Sorry about your diagnosis, and I hope you will do well on your treatments. I’ve not had experience with multiple myeloma, although I did have an aunt who lived with it for many years.
On one hand, if you are happy with your docs and treatments, academic medical centers are often the best places to be for complex treatments - not always the most warm and fuzzy care, but often effective. If you have private supplemental cover or are willing to pay for it, it might be interesting to check out Hirslanden. Compared to UZH, who treats the most patients? Experience really matters in these situations. Another consideration is if you have the transplant, are you looking at an extended hospital stay, and might you be more comfortable in the hotel-like atmosphere. If you have the energy for it - and this is important - it is worthwhile to examine your options, for nothing more than feeling more comfortable with your choices.
Tom is right - Facebook is likely a good resource for patient groups, but you have to wade through a lot of craziness sometimes. Nevertheless, fellow patients are often a good source of information.
For a long time, there was an English speaking cancer support group in Geneva. Recently, the group has morphed into something Switzerland - wide, and they are introducing a program in Zurich.
Thank you Edot for the grounded comments - aware you have personal experience with cancer treatment and recovery, in my case hopefully living a long time with it along with maintenance treatment following the ASCT.
AFAIK (and have been told) due to the high infection risk requiring hospitalisation (in the US at eg MSK this is softened with the use of patient hotel where one has a small studio flat where the nurse can come to check the necessaries) in all possible cases one has a private room regardless. After 6 months I have also started to consider the value of the familiar faces - whether the various doctors or perhaps more importantly the nursing staff, some who work simultaneously in both the stem cell transplant ward and the oncology/hematology dept.
Perhaps more importantly considering the time spent in incarceration :-// is the convenient location of USZ to my partner’s office at ETH - it will be easy for him to pop in for a short visit (bring me more books, an occasional NYT etc)
I’ve never had Facebook, not starting now. So many people I have met seem to feed their own uncertainty getting lost in the silos - the hours in a day disappear quickly enough, screens have mostly left me feeling anxious when my brain gets pummelled a repeat of the myeloma related factual information I have already absorbed.
It seems I’m answering my own question, EF was/is often good just for that
Thanks Ardmore, with each passing moment I have been appreciating how established my treatment is, unless doubt arises about whether the ASCT can take place, little seems to be gained to move up the road for similar treatment.
Further along in time, if maintenance treatment is not giving the stable lasting results hoped for, I may revisit the possibility of a 2nd opinion, to compare what is suggested.
Seems to me, that you have a pretty clear and rational view of what will be best for you. I didn’t seek a second opinion either, everything went well and I didn’t need the added stress.
And of course, when you have a transplant, you are isolated, so the “hotel” aspect might well be unnecessary, and in fact the healthiest environment is likely something very spartan ….sorry, wasn’t thinking. There is a lot to be said for proximity to, for example, your partner.
As for Facebook, yeah, get that. It was rather different in 2011, when I was diagnosed. I do have friends I might during my treatment who have remained virtual friends. Now it is a crowded space.
When I mentioned Facebook, I wasn’t really thinking of the social side of thing but more for extra information about newer treatments and clinical trials.
However much people like to think their oncologist is up-to-date with the latest, it’s just not the case with all of them.
I know of one person recently put on a clinical trial which they heard about on Facebook and of which their oncologist had not heard of, even though they themselves had trained under that doctor.
