September #PANCSM Chat: Caregiver Support

pancsmchat Good evening everyone. We are about to get started with tonights #PancSM chat, our monthly Twitter forum to discuss #PancreaticCancer

Thu Sep 4 18:00:26 PDT 2014   ReplyRetweetFavorite

pancsmchat Tonight we will be joined by #PancreaticCancer experts to discuss caregiver support and the stressors of pancreatic cancer. #PancSM

Thu Sep 4 18:01:19 PDT 2014   ReplyRetweetFavorite

njarellano .@pancsmchat Good evening everyone ! #PANCSM

Thu Sep 4 18:01:49 PDT 2014   ReplyRetweetFavorite

zachweismann Great. Really looking forward to it and ready to start! @PancSMChat #pancsm

Thu Sep 4 18:02:17 PDT 2014   ReplyRetweetFavorite

pancsmchat Please use #PancSM to help us tag and track all tweets. Who’s joining us tonight – please introduce yourselves. #PancSM

Thu Sep 4 18:02:36 PDT 2014   ReplyRetweetFavorite

tgeorgemd RT @NirajGusani: Join us @PatientPower @PanCAN right now for #PancSM chat to discuss caregiver support and stress in #PancreaticCancer

Thu Sep 4 18:02:54 PDT 2014   ReplyRetweetFavorite

pancdoc @PancSMChat Hello all. Mark Bloomston here. Surgical Oncologist @OSUCCC_James #PancSM

Thu Sep 4 18:03:12 PDT 2014   ReplyRetweetFavorite

zachweismann I am zach Weismann. 28 year old son of my mom who was recent diag 2 month ago – stage IV adenocarcinoma metasis to liver #pancsm

Thu Sep 4 18:03:58 PDT 2014   ReplyRetweetFavorite

mkatzmd Hi guys Matt Katz here. Surgical Oncologist at MD Anderson. #pancsm

Thu Sep 4 18:04:08 PDT 2014   ReplyRetweetFavorite

nirajgusani Niraj Gusani, MD, Surgical Oncologist at @PennStHershey specializing in pancreas & liver cancer #PancSM Looking forward to great discussion

Thu Sep 4 18:04:18 PDT 2014   ReplyRetweetFavorite

pancdoc @zachweismann sorry to hear that. i hope we can help tonight. #PancSM

Thu Sep 4 18:04:37 PDT 2014   ReplyRetweetFavorite

pancdoc Hi Niraj and Matt. Glad you’re here #pancsm

Thu Sep 4 18:05:32 PDT 2014   ReplyRetweetFavorite

zachweismann Thank you all for taking the time out of your very busy days. I’d loveto start by asking a few questions about cachexia #pancsm @PancSMChat

Thu Sep 4 18:06:10 PDT 2014   ReplyRetweetFavorite

tgeorgemd Hi everyone. Thom George, Medical Oncology at @UFHealth specializing in GI cancers including #pancreaticcancer @PancSMChat #pancsm #cancer

Thu Sep 4 18:06:20 PDT 2014   ReplyRetweetFavorite

pancsmchat Hi @zachweismann thanks for joining us and sorry to hear about your mom. Hopefully we can help with her situation somewhat tonight #PancSM

Thu Sep 4 18:06:27 PDT 2014   ReplyRetweetFavorite

njarellano Hello everyone. Nelson Arellano. Houston Tx #PANCSM

Thu Sep 4 18:06:38 PDT 2014   ReplyRetweetFavorite

pancdoc @NJArellano Hey Nelson. Glad you made it again. #pancsm

Thu Sep 4 18:07:15 PDT 2014   ReplyRetweetFavorite

pancsmchat Great – let’s get started. T1 First – let’s identify some of the issues around a diagnosis of @PancreaticCancer #pancSM

Thu Sep 4 18:07:29 PDT 2014   ReplyRetweetFavorite

pancsmchat T1 both from a provider & patient standpoint T1 First – let’s identify some of the issues around a diagnosis of @PancreaticCancer #pancSM

Thu Sep 4 18:08:18 PDT 2014   ReplyRetweetFavorite

njarellano @pancdoc Hi Marck. #PANCSM

Thu Sep 4 18:08:36 PDT 2014   ReplyRetweetFavorite

zachweismann My mom (60yrs), care MDanderson had 3 chemo treatments. 2 ffnox, 1 gembrax and suffering heavily from cachexia. How can we do more? #pancsm

Thu Sep 4 18:08:37 PDT 2014   ReplyRetweetFavorite

pancdoc @PancSMChat @PancreaticCancer T1- lots of stressors for patients and family: social, financial, emotional, physical #pancsm

Thu Sep 4 18:09:04 PDT 2014   ReplyRetweetFavorite

nirajgusani I’d say one of the biggest issues is FEAR. Patients tend not to know much about #pancreaticCancer but most of what they hear is BAD. #PancSM

Thu Sep 4 18:09:05 PDT 2014   ReplyRetweetFavorite

nirajgusani RT @pancdoc@PancSMChat @PancreaticCancer T1- lots of stressors for patients and family: social, financial, emotional, physical #pancsm

Thu Sep 4 18:09:14 PDT 2014   ReplyRetweetFavorite

zachweismann I would agree with those comments around fear and lack of information on PC. Not commonly known like other cancers #pancsm

Thu Sep 4 18:10:17 PDT 2014   ReplyRetweetFavorite

nirajgusani Great question @zachweismann – maintaining physical strength and appetite in the midst of treatment can be extremely hard. #pancsm

Thu Sep 4 18:10:31 PDT 2014   ReplyRetweetFavorite

pancdoc @zachweismann cachexia is a HUGE issue for #pancreaticcancer patients #pancsm

Thu Sep 4 18:10:49 PDT 2014   ReplyRetweetFavorite

pancdoc @NirajGusani @zachweismann frequent small meals and supplements are often key #pancsm

Thu Sep 4 18:11:37 PDT 2014   ReplyRetweetFavorite

mkatzmd We have a great palliative care group and alternative medicine group at MDACC Zach… both are of great help in this situation. #pancsm

Thu Sep 4 18:11:49 PDT 2014   ReplyRetweetFavorite

pancsmchat Providers / docs – beyond discussing treatment, what is the most imp you tell patients early on after #pancreaticCancer diagnosis? #PancSM

Thu Sep 4 18:11:58 PDT 2014   ReplyRetweetFavorite

nirajgusani RT @mkatzmd: We have a great palliative care group and alternative medicine group at MDACC Zach… both are of great help in this situation…

Thu Sep 4 18:12:08 PDT 2014   ReplyRetweetFavorite

nirajgusani RT @pancdoc@NirajGusani @zachweismann frequent small meals and supplements are often key #pancsm

Thu Sep 4 18:12:14 PDT 2014   ReplyRetweetFavorite

tgeorgemd Agree @zachweismann regarding lack of info. #pancreaticcancer projected to be #2 cancer by 2030. We can do more. @PancSMChat #pancsm

Thu Sep 4 18:12:35 PDT 2014   ReplyRetweetFavorite

zachweismann as caregivers, besides encouraging to eat smoothies/shakes/ensures what other options to explore? My mom has HHC pt and ot… #pancsm

Thu Sep 4 18:12:46 PDT 2014   ReplyRetweetFavorite

nirajgusani And even small amts of physical activity (just walking) can be helpful in maintaining normalcy. @pancdoc@zachweismann #pancsm

Thu Sep 4 18:13:02 PDT 2014   ReplyRetweetFavorite

pancdoc @PancSMChat attitude counts #pancsm

Thu Sep 4 18:13:10 PDT 2014   ReplyRetweetFavorite

nirajgusani RT @pancdoc@PancSMChat attitude counts #pancsm

Thu Sep 4 18:13:18 PDT 2014   ReplyRetweetFavorite

nirajgusani RT @TGeorgeMD: Agree @zachweismann regarding lack of info. #pancreaticcancer projected to be #2 cancer by 2030. We can do more.@PancSMChat

Thu Sep 4 18:13:26 PDT 2014   ReplyRetweetFavorite

nirajgusani RT @zachweismann: as caregivers, besides encouraging to eat smoothies/shakes/ensures what other options to explore? My mom has HHC pt and o…

Thu Sep 4 18:13:37 PDT 2014   ReplyRetweetFavorite

klemansdl @PancSMChat We spend a lot of time discussing emotional concerns, offering support & resources. Validating, normalizing #pancsm

Thu Sep 4 18:13:45 PDT 2014   ReplyRetweetFavorite

phidias51 I’m Mark Fortner. I lost my Mother and Grandmother to Pancreatic Cancer several years ago. #pancsm

Thu Sep 4 18:13:56 PDT 2014   ReplyRetweetFavorite

nirajgusani supportive caregivers go a LONG LONG way in helping patients through their journey #pancsm

Thu Sep 4 18:14:18 PDT 2014   ReplyRetweetFavorite

mkatzmd Hi Mark. sorry to hear. #pancsm

Thu Sep 4 18:14:36 PDT 2014   ReplyRetweetFavorite

pancdoc @phidias51 sorry to hear that Mark. what did you find most helpful for you to do? #pancsm

Thu Sep 4 18:14:46 PDT 2014   ReplyRetweetFavorite

keniaarias RT @NirajGusani: supportive caregivers go a LONG LONG way in helping patients through their journey #pancsm

Thu Sep 4 18:14:56 PDT 2014   ReplyRetweetFavorite

njarellano @pancsmchat Dealing with cancer can be an emotional roller coaster #PANCSM

Thu Sep 4 18:15:01 PDT 2014   ReplyRetweetFavorite

pancsmchat Hi @phidias51 Thanks for joining – sorry to hear about your family members #pancsm

Thu Sep 4 18:15:02 PDT 2014   ReplyRetweetFavorite

zachweismann That is correct- we have seen MDACC palliative integ med. Big helps. But desire & ability to tolerate over sideeffects hard @mkatzmd #pancsm

Thu Sep 4 18:15:28 PDT 2014   ReplyRetweetFavorite

nirajgusani Concern “am I next” can be real issue for caregivers and family, even if there is no strong family history of #PancreaticCancer #pancsm

Thu Sep 4 18:15:52 PDT 2014   ReplyRetweetFavorite

zachweismann Around supplements, any proven to aid cachexia the most? Attitude is vital as well- good point #pancsm

Thu Sep 4 18:15:54 PDT 2014   ReplyRetweetFavorite

njarellano @nirajgusani I agree. Caregivers also may experience a range of various feelings, just as patients do. #PANCSM

Thu Sep 4 18:16:38 PDT 2014   ReplyRetweetFavorite

phidias51 @pancdoc I think the biggest mistake I made, was not encouraging my Mom to seek palliative care. #pancsm

Thu Sep 4 18:16:39 PDT 2014   ReplyRetweetFavorite

pancsmchat Great point @klemansdl thanks for joining tonight #pancsm

Thu Sep 4 18:16:57 PDT 2014   ReplyRetweetFavorite

pancdoc @phidias51 important point! sometimes the best treatment is support over chemo/surgery #pancsm

Thu Sep 4 18:17:14 PDT 2014   ReplyRetweetFavorite

njarellano @nirajgusani for example, anger, guilt, grief, hopelessness,loneliness, and depression etc #PANCSM

Thu Sep 4 18:17:19 PDT 2014   ReplyRetweetFavorite

nirajgusani Hi Mark – sorry to hear about your loss @phidias51 Do you feel that you and your family had enough support during these illnesses? #pancsm

Thu Sep 4 18:17:46 PDT 2014   ReplyRetweetFavorite

pancdoc we’re finding that caregivers carry WAY more stress than patients using stress inventories #pancsm

Thu Sep 4 18:18:00 PDT 2014   ReplyRetweetFavorite

phidias51 @pancdoc The disease progresses faster than family can manage the stages of grief. #pancsm

Thu Sep 4 18:19:06 PDT 2014   ReplyRetweetFavorite

zachweismann I would agree re caregiver stress as one of my moms top caregivers @phidias51 can u say more re palliative care services #pancsm

Thu Sep 4 18:19:23 PDT 2014   ReplyRetweetFavorite

nirajgusani Thx 4 sharing. Not a mistake. Only now are we realizing that pall care should be offrd to all pts, not just end of life @phidias51 #pancsm

Thu Sep 4 18:19:39 PDT 2014   ReplyRetweetFavorite

klemansdl Caregivers are often reluctant to address their own needs esp w/clinicians. Worried about patient. Risk of caregiver burnout. #pancsm

Thu Sep 4 18:19:43 PDT 2014   ReplyRetweetFavorite

mkatzmd Zach no supplement proven but this is not my area of expertise… talk to your nutritionist as well. you have one assigned to you. #pancsm

Thu Sep 4 18:20:20 PDT 2014   ReplyRetweetFavorite

nirajgusani Yep – hard for many to cope and to continue to give care amidst fear, anxiety, fatigue, burnout #pancsm

Thu Sep 4 18:20:45 PDT 2014   ReplyRetweetFavorite

klemansdl Emotional support is crucial but so is addressing practical/social needs (finances, job, disability, AdvDir, care planning) #pancsm

Thu Sep 4 18:21:32 PDT 2014   ReplyRetweetFavorite

pancsmchat OK great points so far. Patients/family – name 3 things you wish could be improved about going through / dealing with dx / treatment #PancSM

Thu Sep 4 18:21:47 PDT 2014   ReplyRetweetFavorite

pallonc RT @phidias51@pancdoc I think the biggest mistake I made, was not encouraging my Mom to seek palliative care. #pancsm

Thu Sep 4 18:22:08 PDT 2014   ReplyRetweetFavorite

pallonc RT @klemansdl: Emotional support is crucial but so is addressing practical/social needs (finances, job, disability, AdvDir, care planning) …

Thu Sep 4 18:22:23 PDT 2014   ReplyRetweetFavorite

pancsmchat And docs/providers/clinicians – 3 things you stress in terms of supportive care for your #pancreaticCancer patients #pancsm

Thu Sep 4 18:22:27 PDT 2014   ReplyRetweetFavorite

tgeorgemd MT @klemansdl: Caregivers reluctant to address their own needs esp w/ docs. Worried about patient. Risk of caregiver burnout. #pancsm

Thu Sep 4 18:22:29 PDT 2014   ReplyRetweetFavorite

phidias51 @zachweismann Pain mgmt is critical. A large % of pts get perineural invasion, and the celiac nerve block provides temp relief. #pancsm

Thu Sep 4 18:22:31 PDT 2014   ReplyRetweetFavorite

justjakekc RT @PatientPower: More options than ever for those suffering from Pancreatic Cancer! @PanCan #pancsm http://t.co/Gn2ysQ66YO

Thu Sep 4 18:22:54 PDT 2014   ReplyRetweetFavorite

njarellano @pancsmchat Working as a team (oncologist, geriatricians, psychiatrists, pharmacists, social workers, nurses & dietitians) #PANCSM

Thu Sep 4 18:23:42 PDT 2014   ReplyRetweetFavorite

njarellano @pancsmchat can help to identify and manage the stressors which can limit effective cancer treatment. #PANCSM

Thu Sep 4 18:23:56 PDT 2014   ReplyRetweetFavorite

nirajgusani Totally agree – and most pts I see don’t know this is an option. Should never be afraid or reluctant to treat pain in a cancer pt. #pancsm

Thu Sep 4 18:24:00 PDT 2014   ReplyRetweetFavorite

zachweismann 1.proactive palliative care to prevent side effects vs react to them 2. Checking in with patients & caregivers. Does a lot to cgs #pancsm

Thu Sep 4 18:24:39 PDT 2014   ReplyRetweetFavorite

pancdoc 3 things: 1. pain not an option; 2. everyone’s opinion matters; stopping treatment is not the same as giving up #pancsm

Thu Sep 4 18:24:58 PDT 2014   ReplyRetweetFavorite

nirajgusani yes @klemansdl need good social workers and supportive oncology team #pancsm

Thu Sep 4 18:25:11 PDT 2014   ReplyRetweetFavorite

nirajgusani Grt points! 3 things: 1. pain not an option; 2. everyone’s opinion matters; 3 stopping treatment is not the same as giving up #pancsm

Thu Sep 4 18:26:20 PDT 2014   ReplyRetweetFavorite

njarellano @nirajgusani @klemansdl Caregiving is learning how to work with doctors and other health care professionals #PANCSM

Thu Sep 4 18:26:43 PDT 2014   ReplyRetweetFavorite

njarellano @nirajgusani @klemansdl so they treat you as an important member of your loved one’s healthcare team #PANCSM

Thu Sep 4 18:26:56 PDT 2014   ReplyRetweetFavorite

nirajgusani Yes @zachweismann I like 2. Checking in with patients & caregivers. This really helps for pts/caregivers to know that we understand #pancsm

Thu Sep 4 18:27:15 PDT 2014   ReplyRetweetFavorite

phidias51 @PancSMChat There really isn’t any good way to get the news. During treatment you find yourself watching biomarkers… #pancsm

Thu Sep 4 18:27:28 PDT 2014   ReplyRetweetFavorite

zachweismann 3) give caregiver chance w.doctor alone to ask upsetting/challenging questions w.out patient. Often prep for weeks for 30min appt #pancsm

Thu Sep 4 18:27:46 PDT 2014   ReplyRetweetFavorite

pancdoc patients often cont treatment longer than they want so as to not disappoint their team. have to let them know it’s OK to stop #pancsm

Thu Sep 4 18:27:55 PDT 2014   ReplyRetweetFavorite

nirajgusani Yes – The caregivers are just as imp as the patient @NJArellano@klemansdl #PANCSM

Thu Sep 4 18:28:13 PDT 2014   ReplyRetweetFavorite

nirajgusani RT @pancdoc: patients often cont treatment longer than they want so as to not disappoint their team. have to let them know it’s OK to stop …

Thu Sep 4 18:28:26 PDT 2014   ReplyRetweetFavorite

phidias51 @PancSMChat … managing the morphine bolus at night, waiting for rounds, and not dealing w/ the reality of the situation. #pancsm

Thu Sep 4 18:28:29 PDT 2014   ReplyRetweetFavorite

nirajgusani Thx @zachweismann good reminder for us to do this: 3) give caregiver chance w.doctor alone to ask upsetting/challenging questions #pancsm

Thu Sep 4 18:29:08 PDT 2014   ReplyRetweetFavorite

pancdoc i give my email to everyone involved with an open invite to ask anything with warning that i’ll answer honestly #pancsm

Thu Sep 4 18:29:28 PDT 2014   ReplyRetweetFavorite

nirajgusani Yes @phidias51 sometimes all members of the team – pt, caregiver provider can be suffering from DENIAL #pancsm

Thu Sep 4 18:29:58 PDT 2014   ReplyRetweetFavorite

zachweismann @phidias51 @PancSMChat #pancsm agreed. A lot of waiting to watch overall health decline. Even doing all can w. Nourishment, exercise etc

Thu Sep 4 18:30:00 PDT 2014   ReplyRetweetFavorite

cancersurg
  1. Hope is important 2. Minimize other stressors as best you can – not time to diet etc #PancSM

Thu Sep 4 18:30:04 PDT 2014   ReplyRetweetFavorite

phidias51 @pancdoc It’s not just the team, it’s the family. Palliative care can be seen as giving up, and no one wants to give up. #pancsm

Thu Sep 4 18:30:21 PDT 2014   ReplyRetweetFavorite

pancdoc @cancersurg Hey Carl. thanks for joining #pancsm

Thu Sep 4 18:30:45 PDT 2014   ReplyRetweetFavorite

cancersurg
  1. At some point the focus changes from paying attention to the cancer to only attention for the person #PancSM

Thu Sep 4 18:30:50 PDT 2014   ReplyRetweetFavorite

tgeorgemd RT @NirajGusani: Thx @zachweismann good reminder for us: 3) give caregiver chance w.doctor alone to ask upsetting/challenging ?s #pancsm

Thu Sep 4 18:30:54 PDT 2014   ReplyRetweetFavorite

nirajgusani RT @pancdoc@cancersurg Hey Carl. thanks for joining #pancsm

Thu Sep 4 18:30:59 PDT 2014   ReplyRetweetFavorite

pancsmchat Thanks for joining #PancSM tonight @cancersurg

Thu Sep 4 18:31:30 PDT 2014   ReplyRetweetFavorite

zachweismann I think MDACC & others view palliative care as side effect mgmt vs hospice & this is crucial. Frustrate lack side effect management #pancsm

Thu Sep 4 18:31:55 PDT 2014   ReplyRetweetFavorite

klemansdl @cancersurg #PancSM. YES! It’s so important for the patient and family to know we see them as more than a disease. Mind-Body-Spirit

Thu Sep 4 18:32:03 PDT 2014   ReplyRetweetFavorite

pancdoc RT @klemansdl #PancSM. YES! It’s so important for the patient and family to know we see them as more than a disease. Mind-Body-Spirit

Thu Sep 4 18:32:39 PDT 2014   ReplyRetweetFavorite

pancsmchat Great discussion – T2 Are there any pitfalls in our current approach to #PancreaticCancer mgmt with regards to support services? #pancSM

Thu Sep 4 18:32:57 PDT 2014   ReplyRetweetFavorite

mikecowher RT @pancdoc: patients often cont treatment longer than they want so as to not disappoint their team. have to let them know it’s OK to stop …

Thu Sep 4 18:33:09 PDT 2014   ReplyRetweetFavorite

mkatzmd Yes. palliative care and hospice are two entirely different things. #pancsm

Thu Sep 4 18:33:10 PDT 2014   ReplyRetweetFavorite

phidias51 @cancersurg That’s really critical. It’s important for both clinicians and family members to let the pt direct their care. #pancsm

Thu Sep 4 18:33:15 PDT 2014   ReplyRetweetFavorite

zachweismann As cg, day can be so hard to get 3 sips of smoothie down, to get a follow up call from oncology team, unprompted means world #pancsm

Thu Sep 4 18:33:31 PDT 2014   ReplyRetweetFavorite

njarellano 3 things: 1. Pain 2. Nutrition 3. Constipation #PancSM

Thu Sep 4 18:33:42 PDT 2014   ReplyRetweetFavorite

pancdoc T2- how can we better prepare caregivers….besides this tweet chat? #pancsm

Thu Sep 4 18:34:35 PDT 2014   ReplyRetweetFavorite

nirajgusani Yes @NJArellano: 3 things: 1. Pain 2. Nutrition 3. Constipation #PancSM or the opposite of 3. Diarrhea – can make live miserable

Thu Sep 4 18:34:40 PDT 2014   ReplyRetweetFavorite

nirajgusani RT @pancdoc: T2- how can we better prepare caregivers….besides this tweet chat? #pancsm

Thu Sep 4 18:35:00 PDT 2014   ReplyRetweetFavorite

zachweismann What missing- often left up to socialworker to describe palliative services after side effects appear. Incl pt, ot, hhc #pancsm

Thu Sep 4 18:35:13 PDT 2014   ReplyRetweetFavorite

tgeorgemd Impt to change this perception @phidias51@pancdoc: Palliative care can be seen as giving up, and no one wants to give up. #pancsm

Thu Sep 4 18:35:18 PDT 2014   ReplyRetweetFavorite

zachweismann We expected to hear more suggested from oncologists vs is asking what else can we do #pancsm

Thu Sep 4 18:35:35 PDT 2014   ReplyRetweetFavorite

nirajgusani Do you guys (other providers) use your websites, etc for FAQ and other resources for cg? We don’t as much as I think we should #PancSM

Thu Sep 4 18:35:54 PDT 2014   ReplyRetweetFavorite

nirajgusani RT @TGeorgeMD: Impt to change this perception @phidias51@pancdoc: Palliative care can be seen as giving up, and no one wants to give up. …

Thu Sep 4 18:36:17 PDT 2014   ReplyRetweetFavorite

nirajgusani So we should be more proactive… Great point RT @zachweismann: We expected to hear more suggested from oncologists #pancsm

Thu Sep 4 18:39:05 PDT 2014   ReplyRetweetFavorite

nirajgusani Agree RT @phidias51@cancersurg It’s important for both clinicians and family members to let the pt direct their care. #pancsm

Thu Sep 4 18:39:56 PDT 2014   ReplyRetweetFavorite

klemansdl T2: If pts/fam live distance, it is challenging to get them help esp if can’t/won’t come back for supp svc #pancsm

Thu Sep 4 18:40:02 PDT 2014   ReplyRetweetFavorite

zachweismann
  1. My mom, wish cachexia talked about more in beg. even tho difficult. ESP since 80% patients get it #pancsm

Thu Sep 4 18:40:50 PDT 2014   ReplyRetweetFavorite

nirajgusani Huge issue – in a big center, many pts coming from far far away. When they go back, hard to maintain support @klemansdl #pancsm

Thu Sep 4 18:41:18 PDT 2014   ReplyRetweetFavorite

pancdoc @zachweismann sometimes pt and cg think MD only wants to talk cancer so avoids discussing stressors; that’s where the team can help #pancsm

Thu Sep 4 18:41:47 PDT 2014   ReplyRetweetFavorite

phidias51 @pancdoc Set expectations about the progression of the disease. If a pt has 3 months, families need to know 2.5 may be conscious. #pancsm

Thu Sep 4 18:41:51 PDT 2014   ReplyRetweetFavorite

nirajgusani Great point – many patients have already lost weight b4 dx, but we don’t always stress further wt loss @zachweismann #pancsm

Thu Sep 4 18:42:09 PDT 2014   ReplyRetweetFavorite

zachweismann Agree with travel and distance. Important issue #pancsm

Thu Sep 4 18:42:44 PDT 2014   ReplyRetweetFavorite

tgeorgemd Agree @zachweismann Most anticipate fatigue, cachexia totally different and much worse complication of #pancreaticcancer #pancsm

Thu Sep 4 18:42:49 PDT 2014   ReplyRetweetFavorite

mkatzmd Setting expectations is difficult for many even experienced oncologists, unfortunately. #pancsm

Thu Sep 4 18:43:17 PDT 2014   ReplyRetweetFavorite

nirajgusani Great point @pancdoc my pts often more comfortable talking to my (awesome) nurse coordinator about these issues @zachweismann #pancsm

Thu Sep 4 18:43:19 PDT 2014   ReplyRetweetFavorite

njarellano An important issue no less important : “ADDRESSING FINANCIAL AND LEGAL MATTERS” #PANCSM

Thu Sep 4 18:43:38 PDT 2014   ReplyRetweetFavorite

nirajgusani Yes – many lost jobs, insurance, etc while dealing w this disease @NJArellano ADDRESSING FINANCIAL AND LEGAL MATTERS #PANCSM

Thu Sep 4 18:44:36 PDT 2014   ReplyRetweetFavorite

zachweismann Reality is as cg you just want to know U are doing all possible. And it’s hard. #pancsm

Thu Sep 4 18:45:02 PDT 2014   ReplyRetweetFavorite

phidias51 @pancdoc Need to know about PNI, and cachexia, clinical trials, genetics. The need for tumor samples at various stgs in the disease. #pancsm

Thu Sep 4 18:45:22 PDT 2014   ReplyRetweetFavorite

amartmd Agree, this issue is big!!“@NJArellano: An important issue no less important : “ADDRESSING FINANCIAL AND LEGAL MATTERS” #PANCSM

Thu Sep 4 18:45:36 PDT 2014   ReplyRetweetFavorite

njarellano When dealing with a life-threatening illness you may need to put your financial matters in order #PANCSM

Thu Sep 4 18:46:07 PDT 2014   ReplyRetweetFavorite

zachweismann Looking at clinical trials, asking right ?s, supplements nutrients, exercise, exploring all options. Have to advocate constantly #pancsm

Thu Sep 4 18:46:20 PDT 2014   ReplyRetweetFavorite

pancsmchat OK so T3 in the last 15 min, what are the most important words of wisdom from patients/caregivers & docs/providers to pts/cgs #pancSM

Thu Sep 4 18:46:40 PDT 2014   ReplyRetweetFavorite

_alikaptan_ RT @PatientPower: More options than ever for those suffering from Pancreatic Cancer! @PanCan #pancsm http://t.co/Gn2ysQ66YO

Thu Sep 4 18:47:04 PDT 2014   ReplyRetweetFavorite

zachweismann Anyone want to collaborate on cg pancreatic cancer comprehensive guide? Think Is needed more than I’ve seen #pancsm

Thu Sep 4 18:47:27 PDT 2014   ReplyRetweetFavorite

pancsmchat Hi @AMartMD thx for joining #PancSM chat tonight

Thu Sep 4 18:47:27 PDT 2014   ReplyRetweetFavorite

phidias51 I’m surprised that we don’t make psychological care, an integral part of the care team just like pain mgmt, nursing, etc. #pancsm

Thu Sep 4 18:48:01 PDT 2014   ReplyRetweetFavorite

njarellano Having a financial plan may reduce some of the stress in the patient’s life and help you better cope #PANCSM

Thu Sep 4 18:48:06 PDT 2014   ReplyRetweetFavorite

nirajgusani This would be a great resource! RT @zachweismann: cg pancreatic cancer comprehensive guide -Is needed more than I’ve seen #pancsm

Thu Sep 4 18:48:16 PDT 2014   ReplyRetweetFavorite

nirajgusani RT @phidias51: I’m surprised that we don’t make psychological care, an integral part of the care team just like pain mgmt, nursing, etc. #p

Thu Sep 4 18:48:27 PDT 2014   ReplyRetweetFavorite

tgeorgemd T3 TIPS: Live each day; LOVE; don’t sweat the small stuff; distance yourself from negativity; accept reality @PancSMChat #pancsm #cancer

Thu Sep 4 18:48:47 PDT 2014   ReplyRetweetFavorite

pancdoc @phidias51Agree. We have survivorship consultation at time of diagnosis with assessment of psychological needs #pancsm

Thu Sep 4 18:48:59 PDT 2014   ReplyRetweetFavorite

nirajgusani We try but resources are tight – we’ve been trying to hire a dedicated psych doc for 3 yrs @phidias51 #pancsm

Thu Sep 4 18:49:09 PDT 2014   ReplyRetweetFavorite

nirajgusani RT @TGeorgeMD: T3 TIPS: Live each day; LOVE; don’t sweat the small stuff; distance yourself from negativity; accept reality @PancSMChat #pa

Thu Sep 4 18:49:25 PDT 2014   ReplyRetweetFavorite

nirajgusani RT @pancdoc@phidias51Agree. We have survivorship consultation at time of diagnosis with assessment of psychological needs #pancsm

Thu Sep 4 18:49:28 PDT 2014   ReplyRetweetFavorite

nirajgusani Great tips @TGeorgeMD T3 TIPS: Live each day; LOVE; don’t sweat the small stuff; distance yourself from negativity; accept reality #pancsm

Thu Sep 4 18:50:02 PDT 2014   ReplyRetweetFavorite

phidias51 Ask the questions you want to ask of the patient. Don’t hold back. Resolve what needs to be resolved. Remember everything. #pancsm

Thu Sep 4 18:51:15 PDT 2014   ReplyRetweetFavorite

pancdoc T3- caregivers going thru this too so ok to emote #pancsm

Thu Sep 4 18:51:15 PDT 2014   ReplyRetweetFavorite

nirajgusani T3 I would add – No one way / path / treatment is right for everyone. Do what is right for you or your loved one #pancsm

Thu Sep 4 18:51:26 PDT 2014   ReplyRetweetFavorite

nirajgusani RT @pancdoc: T3- caregivers going thru this too so ok to emote #pancsm

Thu Sep 4 18:51:43 PDT 2014   ReplyRetweetFavorite

nirajgusani RT @phidias51: Ask the questions you want to ask of the patient. Don’t hold back. Resolve what needs to be resolved. Remember everything. #…

Thu Sep 4 18:51:46 PDT 2014   ReplyRetweetFavorite

zachweismann
  1. Stay in the present moment. 2. Assemble your team. 3. Love, keep hope. This is a disease that can be beaten & a lot of survivors #pancsm

Thu Sep 4 18:51:58 PDT 2014   ReplyRetweetFavorite

nirajgusani Yes @zachweismann Thx for reminder 1. Stay in the present 2. Assemble your team. 3. Love, keep hope. #pancsm

Thu Sep 4 18:52:44 PDT 2014   ReplyRetweetFavorite

nirajgusani RT @zachweismann: 1. Stay in the present moment. 2. Assemble your team. 3. Love, keep hope. This is a disease that can be beaten & a lot of…

Thu Sep 4 18:52:57 PDT 2014   ReplyRetweetFavorite

nirajgusani Great message from @zachweismann #pancreaticcancer is a disease that can be beaten & a lot of #survivors #pancsm

Thu Sep 4 18:53:26 PDT 2014   ReplyRetweetFavorite

tgeorgemd RT @NirajGusani: Yes @zachweismann Thx for reminder 1. Stay in the present 2. Assemble your team. 3. Love, keep hope. #pancsm

Thu Sep 4 18:53:35 PDT 2014   ReplyRetweetFavorite

pancdoc T3- i encourage team to work in shifts and get their rest; tired families make bad decisions, just like tired doctors #pancsm

Thu Sep 4 18:53:51 PDT 2014   ReplyRetweetFavorite

pancdoc RT @NirajGusani Great message from @zachweismann #pancreaticcancer is a disease that can be beaten & a lot of #survivors #pancsm

Thu Sep 4 18:54:16 PDT 2014   ReplyRetweetFavorite

nirajgusani Yes but no cg work hour restrictions 🙂 @pancdoc: T3- encourage team to work in shifts and get their rest #pancsm

Thu Sep 4 18:54:42 PDT 2014   ReplyRetweetFavorite

phidias51 My impression is that we’re still not integrating research into the picture – molecular tumor boards, consistent epidemiology #pancsm

Thu Sep 4 18:54:44 PDT 2014   ReplyRetweetFavorite

pallonc RT @phidias51: I’m surprised that we don’t make psychological care, an integral part of the care team just like pain mgmt, nursing, etc. #p

Thu Sep 4 18:54:56 PDT 2014   ReplyRetweetFavorite

pancdoc @phidias51 Amen. not much research in non-cancer management of cancer patient #pancsm

Thu Sep 4 18:55:35 PDT 2014   ReplyRetweetFavorite

phidias51 … communicating genetic risk factors back to F1 relatives. #pancsm

Thu Sep 4 18:55:44 PDT 2014   ReplyRetweetFavorite

nirajgusani Prob not to the extent we can – an opportunity for improvement RT @phidias51: we’re still not integrating research into the picture #pancsm

Thu Sep 4 18:55:54 PDT 2014   ReplyRetweetFavorite

nirajgusani RT @pancdoc@phidias51 Amen. not much research in non-cancer management of cancer patient #pancsm

Thu Sep 4 18:56:19 PDT 2014   ReplyRetweetFavorite

zachweismann Yes improve genetictesting, supportive care services and early detection before metsastsis #pancsm

Thu Sep 4 18:56:25 PDT 2014   ReplyRetweetFavorite

pancdoc @phidias51 It is happening though. we have a drug in preclinical studies which reverses cachexia in mice with cancer #pancsm

Thu Sep 4 18:56:35 PDT 2014   ReplyRetweetFavorite

ctsinclair RT @phidias51: I’m surprised that we don’t make psychological care, an integral part of the care team just like pain mgmt, nursing, etc. #p

Thu Sep 4 18:57:19 PDT 2014   ReplyRetweetFavorite

nirajgusani And many of us are starting to study supportive oncology, Qual of Life, etc @pancdoc @phidias51 #pancsm #research

Thu Sep 4 18:57:26 PDT 2014   ReplyRetweetFavorite

klemansdl I prob give out too much advice to pt/cg but at the end of the day I hope they know our team cares…A LOT #pancsm

Thu Sep 4 18:58:04 PDT 2014   ReplyRetweetFavorite

tgeorgemd RT @NirajGusani: Great message from @zachweismann #pancreaticcancer is a disease that can be beaten & a lot of #survivors #pancsm

Thu Sep 4 18:58:04 PDT 2014   ReplyRetweetFavorite

pancdoc Getting close to the end of the hour. how about we revisit surgery recovery next month AND address chemo toxicities? #pancsm

Thu Sep 4 18:58:11 PDT 2014   ReplyRetweetFavorite

pancsmchat Wow – another great #PancSM chat is nearing the end. Thx so much to all the participants. Any final words? #PancSM

Thu Sep 4 18:58:16 PDT 2014   ReplyRetweetFavorite

njarellano In conclusion, all team members have the same goal :to offer services that provide the highest quality of life and extend survival #PANCSM

Thu Sep 4 18:58:41 PDT 2014   ReplyRetweetFavorite

nirajgusani Sounds good @pancdoc revisit surgery recovery next month AND address chemo toxicities? #pancsm

Thu Sep 4 18:58:54 PDT 2014   ReplyRetweetFavorite

phidias51 @pancdoc What’s the drug? Do you know the ctid for the trial? I’d like to see one for PNI as well. A cocktail might improve QOL. #pancsm

Thu Sep 4 18:58:57 PDT 2014   ReplyRetweetFavorite

nirajgusani Yes @NJArellano: all team members have the same goal :to offer services that provide the highest quality of life & extend survival #PANCSM

Thu Sep 4 18:59:26 PDT 2014   ReplyRetweetFavorite

zachweismann Thanks to all medical professionals who made themselves available. Can’t tell you how encouraging& appreciate. Utilizing tech4good #pancsm

Thu Sep 4 18:59:38 PDT 2014   ReplyRetweetFavorite

pancdoc @phidias51 no drug name yet; in-house production so far; hoping for phase 1 in next 1-2 years #pancsm

Thu Sep 4 18:59:50 PDT 2014   ReplyRetweetFavorite

 

Advertisements
This entry was posted in Uncategorized. Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s