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726 Goodwill
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danellsar
Sacramento, CA
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Spouse/Partner: Head & Neck/Throat Cancer > Esophagus (Esophageal) CancerPatient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 1 year ago, Male, Age: 47





Update 1 day ago
danellsar posted an update
The cancer is winning this battle. Liver tumors have spread. Esophageal tumor is growing. Blood clots everywhere. The decision has been made to stop chemo and all other forms of treatment. We're meeting with palliative care tomorrow to bring hospice into the picture.
Comment about 17 hours ago
CarolLHRN
My thoughts are with you and your husband.
Experience 1 day ago
danellsar
Other Care (Hospice)
Experience 1 day ago
danellsar
Decision Point: Meeting with palliative care team to bring in hospice.
Update 5 days ago
danellsar posted an update
Husband is back in ER again. Internal bleeding. Looking like he will be admitted to ICU shortly.
Comment 4 days ago
Jessica
Praying for you. God bless.
Comment 4 days ago
CarolLHRN
Thinking of you and wishing the best.
Comment 2 days ago
CrazyCatMan
Oh no :-( Prayers and hugs for you both
New Follow 9 days ago
danellsar
is following CrazyCatMan
Wall Post 10 days ago
danellsar wrote on CrazyCatMan's wall
Becky- EC is a terribly complicated huge OH NO!!!! Do you know what your dad's stage was at diagnosis? It makes a difference in the treatment options. My husband was stage 4, multiple metastatic, at diagnosis, so he could not get surgery. He's done chemo for over a year now, and a bunch of radiation. The good news is the tumor at the GI junction has shrunk a lot, he can eat and drink regularly, he's regained the weight he lost. The bad news is that his liver and other tumors are still going strong.
We are north of you. I can HIGHLY recommend UC Davis Cancer Center if you want a 2nd opinion. It is a nationally ranked comprehensive cancer treatment center, and they have been very agressive and creative in my husband's treatment. If you want to stay in So Cal, Cedars Sinai has a good program, as does UCLA. Look for the best, read the reviews, find the place that feels the most comfortable and matches your dad's needs.
Ellen
Comment 10 days ago
CrazyCatMan
The oncologist (one of the best in the Bakersfield area) never assigned a stage to it, only said that it was "extremely treatable". The surgeon at USC said the same thing, also that he wouldn't be able to tell for sure what stage it was until he physically removed it during the surgery. Surgeon estimated stage 2 or 3 from looking at the CAT scans and PET scans.
Is that normal, not putting a stage to it?
Comment 10 days ago
CrazyCatMan
We checked into UCLA, and according to them they don't have a specialist for EC. USC, however, does. Thanks for the other places to look into. We've never had anyone in our family have to travel anywhere for treatments for anything and I wouldn't even know where to start looking. I do like the surgeon we met with at USC, he seemed very knowledgeable and his credentials are very impressive.
As big as Bakersfield is now, it would be nice if we had something here at home. I don't even want to think about the financial burden of having to travel back and forth to LA or anywhere else. We were barely making ends meet to start with :-( ~Becky
Comment 9 days ago
danellsar
Becky- We got the stage right away. If it's surgical, it's below stage 4. My husband was stage 4b, meaning that he was already beyond surgery and the cancer had already spread into multiple other organs at the time of his diagnosis.
As far as "highly treatable", that would depend on where he is to start. For us, we were told it was not curable because it was so advanced. I've heard of a number of folks who have lived long and healthy lives after surgery and chemo from EC. I guess it depends. Sounds like your dad got lucky in having it found so early. Most EC isn't found till it's already stage 4.
There are a couple of great specialists up here at UC Davis (our oncology team), and I've heard of a few in the LA area. I think once your dad is through his surgery, he'll be able to do chemo more locally and have consult visits with specialists. You should call the American Cancer Society, as they have many resources to help with travel and living expenses for treatment.
Update 10 days ago
danellsar posted an update
Husband has been in hospital and now rehab facility for the last 7 weeks. He's stir crazy to get home, but still very weak and having ongoing balance issues. Stupid cancer!!!!!!!!!!!
(He's 46).
Comment 8 days ago
DaveWaz
UGH. Sending you a big hug. That really stinks.
New Follow 15 days ago
danellsar
is following spamgirl24
New Follow 15 days ago
danellsar
is following ogtxaggiemom
Wall Post 15 days ago
danellsar wrote on ogtxaggiemom's wall
My husband also has esophageal cancer in the same place, at the GI junction with the stomach. He's been in treatment a bit over a year now, chemo and radiation. He has liver mets and lymph nodes, but the actual esoph. tumor has shrunk. He regained all the weight he lost at first. Eating is better. It's been a terribly hard year but he's still going. Let me know if you have any questions.
Ellen
Comment 15 days ago
ogtxaggiemom
Thank you for your encouragement. We are taking it day by day. He has now started a new round of chemo...once every other week, chemo all day, pump taken home for 48 hours and then removed...he will be doing 4 sessions of this and then they will scan to see if it has shrunk, grow or moved. We were blindsided since he was staged at a II or III, and now a IV. We are hoping this round of chemo does not mess with his appetite because it has finally come back and is eating well....thanks again.
Wall Post 26 days ago
danellsar wrote on lillynme's wall
Lily- My husband currently has stage 4 esophageal cancer. We are local to you. Is your dad being seen at UCD? They're great! Let me know if you have any questions.
Ellen
Experience 27 days ago
danellsar
Side Effects (Fluid in the abdomen (ascites)): Massive edema due to multiple weeks hospitalization and IV fluids. Abdomen and legs are very swollen. Has gained 30 lbs in 3 weeks.
Experience 27 days ago
danellsar
Other Care (Hospitalization): 2+ weeks in hospitals to treat blood clots. Released to a skilled nursing facility to try and regain strength and mobility. Hasn't been at home in over 3 weeks!
Experience 27 days ago
danellsar
Drug or Chemo Therapy (Anticoagulants for blood clots): Husband was hospitalized for 2 weeks on IV heparin due to large numbers of blood clots (brought on by chemo). In the last 3 weeks he's gained 30 lbs. from water retention and new meds. He can no longer walk or perform daily care.
Update about 1 month ago
danellsar posted an update
He's finally out of the hospital. They sent him to a skilled nursing rehab to try and regain some strength. No chemo for now.
Comment 30 days ago
StunnedMike
He is having a rough go at it. I hope things start impoving. My prayers are with you and your husband.
Comment 30 days ago
DaveWaz
One step at a time. I hope you are taking good care of yourself, too.
Comment 29 days ago
CarolLHRN
Rehab can be a good thing and a heck of a lot better than the hospital. Hang in there!
New Follow about 1 month ago
danellsar
is following calibrina
Wall Post about 1 month ago
danellsar wrote on calibrina's wall
Calibrina- I livein Sacramento. My husband has stage 4 esophageal cancer and is close in age to your brother. He was diagnosed over a year ago. It's been a tought year, but he's still fighting. This cancer is terrible. Where is your brother being treated? There are many new treatments and he needs to be at a top cancer center.The one here at UC Davis is great! UC San Francisco has a good cancer center, and so does Stanford. It really does make a difference where you get treated.
Please take a deep breath and slow down. There are several people here who can help you understand this.
Ellen
Update about 1 month ago
danellsar posted an update
What a whirlwind. Husband was inpatient all last week for 6 days due to pain and infection. Sent home on Sunday, and went back to ER on Tuesday for more pain and legs swelling. Spent 30 hours in the ER waiting for a bed to open up. Diagnosis is blood clots in his legs. Currently is getting IV heparin and on telemetry. The pain from the clots is so bad that he cannot walk.
I think maybe I'd like a vacation now. Pretty please?
Comment about 1 month ago
CarolLHRN
You totally deserve a vacation! Treat yourself to a pedicure. It's a mini vacation at least!
I am glad they figured out what the issue is. He will probably end up going home on Lovenox injections once or twice a day that he can give himself. If the copayment is high for your insurance, there is a program Lovenox has to help patients with the copayment.
Comment about 1 month ago
danellsar
Thanks, Carol. As long as he is on heparin, he will have to be on monitoring. He has had poor reactions to the meds, so they are watching him carefully. The good news is a private room.
Comment 25 days ago
iwillsurvive
God Bless You and yours. Ive lost both my mom and dad to cancer and found out today I have lymphoma. We are going to Hawaii at summers end and you should plan on a vacation too - even a day road trip is something to look forward to and help keep your mind off of your current situation.
Hang in there my friend - I will be following you!
Question about 1 month ago
danellsar posted a questionHead & Neck/Throa...
Any reason other than leukemia for a very high white count?
Answered Question about 1 month ago
susie81610 answered
HI:
Just wondering if you guys have gotten any answers yet? Hope things are turning around for you and the counts are coming down. Let us know how it's going when you have some time. Praying for you.
Big Hugs
Susie
Answered Question about 1 month ago
saltermd answered
High white cell count (leukocytosis) can have a multitude of causes. It is highly unlikely for cancer patients to have multiple simultaneous cancers (i.e., esophageal cancer and leukemia). Most often leukocytosis is due to infection, physical stress ( a sick body responding to illness, injury, etc.) or steroids (used for all sorts of things in cancer patients ). If patients are on any kind of steroids that tends to be the culprit, provided they are not running fevers that would otherwise indicate active infection.
Answered Question about 1 month ago
danellsar answered
They originally thought it was infection, and spent a week treating the infection while blood cultures grew. Nothing grew. He's not currently on steroids, been at least a month since the last course of those. They finally diagnosed blood clots, large numbers through both legs. He has a filter in his vein but it was clogged. He's done badly on anticoagulants in the past, so initially they were not going to do that. Eventually they did put him on heparin and also moved him to the telemetry floor so he could be constantly monitored. He's had 4 units of blood the last few days as he's been on heparin, and his white count is down from a high of 29,900 last Wednesday to 19,500 today.
Ellen
Update about 1 month ago
danellsar posted an update
Well, he was home for 36 hours, and is now back in the hospital.
:-(
Not enjoying my spring break here.
Comment about 1 month ago
DaveWaz
Oh no. Are you getting the support you need? I hope you are also taking good care of yourself.