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HeiressofBickworth

(2,682 posts)
Mon Dec 9, 2019, 03:14 AM Dec 2019

Since there have been so many inquiries about my absence...

oh, what? No inquiries? Anyone the least bit curious? How about a round of mehh.

Ok, since you have asked so nicely, I'll tell you.

I've been busy fighting cancer. Stage 4 lymphoma to be a little more specific. Started when I had pains down one leg. I don't fault the doctors -- they followed to most common and logical evidence and treated me for sciatica. Then I did the proverbial, I've fallen and I can't get up thing and wound up in the ER where they gave me pain medicine that shut my brain down to the extent that one doctor told my daughter that I was in the final stages of Alzheimers and she should just make me comfortable and let me go. Fortunately for me, she was a terrific advocate and calmer heads prevailed. In walked the savior! An oncologist who gave the diagnosis and the treatment plan which was to start the very next day. Leg problem was that a tumor ate away at my hip breaking the joint and that was why I couldn't walk. So, hospitalized for a month, six radiation treatments, chemo every 21 days, seven weeks in the third level of hell called a rehab facility (oh, the tales I could tell about that joint!) Anyway, I'm home, still can't walk very well and now they are talking about a hip replacement. Anyway, what kept me from communicating with all you nice folks was that I had such neuropathy in my hands (I was warned the chemo drugs would do that) that I couldn't feel the keyboard in order to send messages. That's better now although I'm having to correct typos in this post. Oh, the good news: cancer has been in remission since the second chemo treatment (there were a total of six).

So, anything been going on lately? Just kidding. Through everything, I managed to read DU several times a day on my phone. While I was in rehab it kept me from climbing the walls.

38 replies = new reply since forum marked as read
Highlight: NoneDon't highlight anything 5 newestHighlight 5 most recent replies
Since there have been so many inquiries about my absence... (Original Post) HeiressofBickworth Dec 2019 OP
Oh my GOODNESS!!! elleng Dec 2019 #1
Glad the diagnosis found you! dchill Dec 2019 #2
Yay! Your cancer is in remission. TexasTowelie Dec 2019 #3
Friend of mine fighting that has had complete remission from CAR T treatment. diane in sf Dec 2019 #4
Apparently there are different types of lymphoma HeiressofBickworth Dec 2019 #8
My brother has/had this type Freddie Dec 2019 #23
NED is great news! HeiressofBickworth Dec 2019 #31
This is where I need to give credit to good doctors and good insurance HeiressofBickworth Dec 2019 #5
Of course True Blue American Dec 2019 #16
I'm truly amazed that you are thinking of others even as you've MaryMagdaline Dec 2019 #36
Oh, I'm no saint HeiressofBickworth Dec 2019 #37
So glad you're seeing progress. badhair77 Dec 2019 #6
Oh, wow! CottonBear Dec 2019 #7
Sounds like a battle well fought DFW Dec 2019 #9
I'm so glad you're back. Here, for your entertainment are some things you might have missed... Hekate Dec 2019 #10
Hug shenmue Dec 2019 #11
Well that's one hell of trip! lunatica Dec 2019 #12
Glad to hear you're in remission. Welcome back! nt tblue37 Dec 2019 #13
Congratulations on BlueMTexpat Dec 2019 #14
Thank goodness True Blue American Dec 2019 #15
so glad you're in remission! and glad that your oncologist & daughter were there to save you! diva77 Dec 2019 #17
Welcome back. Scarsdale Dec 2019 #18
I am glad you are back. The remission murielm99 Dec 2019 #19
Sounds like a nightmare. Good for our wonderful daughter, being able to advocate for you. pnwmom Dec 2019 #20
What an ordeal! calimary Dec 2019 #21
Best wishes to you. You're quite the fighter! chia Dec 2019 #22
Omg, what an ordeal you've been through Fla Dem Dec 2019 #24
12/9 UPDATE HeiressofBickworth Dec 2019 #25
Thank you for the update, and happy birthday to you Hekate Dec 2019 #32
It is wonderful you won this battle pandr32 Dec 2019 #26
Oh my stars! FM123 Dec 2019 #27
Vibes to you. My mom had a hip replacement and she never complained applegrove Dec 2019 #28
Congrats to your Mom HeiressofBickworth Dec 2019 #34
glad you are back Kali Dec 2019 #29
You sound remarkably upbeat considering the wringer you've been through! I hope the Karadeniz Dec 2019 #30
Upbeat? HeiressofBickworth Dec 2019 #33
glad you are back KT2000 Dec 2019 #35
Weird that a fall could have saved your life? lark Dec 2019 #38

diane in sf

(3,904 posts)
4. Friend of mine fighting that has had complete remission from CAR T treatment.
Mon Dec 9, 2019, 03:35 AM
Dec 2019
https://en.m.wikipedia.org/wiki/Chimeric_antigen_receptor_T_cell

“...Chimeric antigen receptors (CARs, also known as chimeric immunoreceptors, chimeric T cell receptors or artificial T cell receptors) are receptor proteins that have been engineered to give T cells the new ability to target a specific protein. The receptors are chimeric because they combine both antigen-binding and T-cell activating functions into a single receptor.

CAR-T cell therapy uses T cells engineered with CARs for cancer therapy. The premise of CAR-T immunotherapy is to modify T cells to recognize cancer cells in order to more effectively target and destroy them. Scientists harvest T cells from people, genetically alter them, then infuse the resulting CAR-T cells into patients to attack their tumors.[2] CAR-T cells can be either derived from T cells in a patient's own blood (autologous) or derived from the T cells of another healthy donor (allogeneic). Once isolated from a person, these T cells are genetically engineered to express a specific CAR, which programs them to target an antigen that is present on the surface of tumors. For safety, CAR-T cells are engineered to be specific to an antigen expressed on a tumor that is not expressed on healthy cells.[3]

After CAR-T cells are infused into a patient, they act as a "living drug" against cancer cells.[4] When they come in contact with their targeted antigen on a cell, CAR-T cells bind to it and become activated, then proceed to proliferate and become cytotoxic.[5] CAR-T cells destroy cells through several mechanisms, including extensive stimulated cell proliferation, increasing the degree to which they are toxic to other living cells (cytotoxicity) and by causing the increased secretion of factors that can affect other cells such as cytokines, interleukins and growth factors.[6]...”

HeiressofBickworth

(2,682 posts)
8. Apparently there are different types of lymphoma
Mon Dec 9, 2019, 03:46 AM
Dec 2019

Specifically, I have diffuse large B-cell lymphoma. They had to wait a few hours to determine if mine was of the T-cell variety. I had what's called R-CHOP. "Despite its aggressive disease course, ?50% to 70% of patients may be cured by current standard of care consisting of rituximab plus cyclophosphamide, doxorubicin, vincristine, and prednisone (R-CHOP) chemotherapy. Three of the drugs in R-CHOP are powerful cytotoxics, which means they kill cells. One is a type of immunotherapy and the last is a steroid, which has shown to have anticancer effects."

I'm so impressed with the state of knowledge about cells and drugs that the doctors can achieve remissions and cures! I'm also grateful that the government funds research and development of medicines not only for lymphoma but other diseases. We need to watch out for politicians who want to cut funding and make sure they aren't in a position to do so.

Glad to hear your friend is doing so well!!!

Freddie

(9,232 posts)
23. My brother has/had this type
Mon Dec 9, 2019, 09:47 AM
Dec 2019

Had aggressive chemotherapy 22 years ago. He was in remission all that time and it came back last winter. He had the same symptoms (mainly pain in groin and swollen leg) and jumped on it right away. Doc was not sure if it was the original cancer returning after 22 years or a “new” one. Decided to treat very aggressively. Had not spread to his bone marrow so they did a autologous (self) bone marrow transplant. He was in Hershey Medical Center for almost a month as you cannot he exposed to any germs whatsoever for a couple weeks after the transplant. That was in June, he’s doing great, all tests are NED (no evidence of disease), he’ll be 67 next month. Hope he’s like Kirk Douglas and makes it to 103.

HeiressofBickworth

(2,682 posts)
31. NED is great news!
Tue Dec 10, 2019, 01:20 AM
Dec 2019

Glad to hear he is doing well. I've been told the first two years of remission are the most likely, if it's going to recur. Something abour random cells that weren't killed by chemo but not currently detectable. So, I realize I'm not completely out of the woods yet.

HeiressofBickworth

(2,682 posts)
5. This is where I need to give credit to good doctors and good insurance
Mon Dec 9, 2019, 03:35 AM
Dec 2019

The oncologist jumped right on it and radiation and chemo did their jobs. Am ever so grateful for Medicare and a supplement insurance plan. After seeing the bills and the very small percentage I have to pay, I'm reminded that there are so many people who haven't reached Medicare age and would be in a world of shit if they had to go through all this with inadequate or no insurance. I used to be a bankruptcy paralegal back in the day. About 85% of my clients were medical bankruptcies. I have always been in favor of Medicare for All but now I see the actual numbers on the invoices and know that I would be bankrupt and homeless without it. Or, I would be taking a dirt nap. So, vote, vote, vote -- watch for the ones who will support or expand Medicare. And that DOESN'T mean Repubs, obviously.

MaryMagdaline

(6,849 posts)
36. I'm truly amazed that you are thinking of others even as you've
Tue Dec 10, 2019, 05:35 AM
Dec 2019

struggled through such a debilitating illness. So glad you are here on DU!

HeiressofBickworth

(2,682 posts)
37. Oh, I'm no saint
Tue Dec 10, 2019, 07:06 AM
Dec 2019

The evidence is all around us just how unjust it is. My background as a bankruptcy paralegal sensitized me long ago about the financial perils of American healthcare.

While I was in rehab, my roommate's insurance ran out. She was panicked about what was going to happen. She was there with a broken back and was completely bed-bound. She started the process of applying for state medicaid. She hadn't received it before I left. With universal healthcare, this extra burden wouldn't have been a problem. These stories are all too common.

CottonBear

(21,596 posts)
7. Oh, wow!
Mon Dec 9, 2019, 03:40 AM
Dec 2019

You are lucky to have such a wonderful daughter as your advocate.

You have been through quite an ordeal.

I hope you continue to heal. Please keep us updated.

Peace.

CB

DFW

(54,057 posts)
9. Sounds like a battle well fought
Mon Dec 9, 2019, 04:09 AM
Dec 2019

My wife has been though cancer twice, and she's still with me. My time is coming, too (both parents and all their siblings had cancer, one cousin died of it at 41), but I'm in no rush to find out when.

Hekate

(90,202 posts)
10. I'm so glad you're back. Here, for your entertainment are some things you might have missed...
Mon Dec 9, 2019, 04:12 AM
Dec 2019

...while reading DU on the phone. People brought these back for the holiday season -- I hope they bring you pleasure.

DU Classics

The Monkeys Still Control the Cabana
https://www.democraticunderground.com/1018577487

Door Buzzard
https://www.democraticunderground.com/10027423760

I inherited a mixed animal...
https://www.democraticunderground.com/discuss/duboard.php?az=view_all&address=105x624815

lunatica

(53,410 posts)
12. Well that's one hell of trip!
Mon Dec 9, 2019, 04:32 AM
Dec 2019

I’m glad you’re OK and back with us. And it’s good you were able to keep up with the shit that’s been going on with Trump. I’m just really sorry you’ve been suffering so much. Stay well.

BlueMTexpat

(15,349 posts)
14. Congratulations on
Mon Dec 9, 2019, 05:09 AM
Dec 2019

fighting the good fight!

So sorry to hear that you have had to!

May your deadly foe forever remain in remission!

True Blue American

(17,972 posts)
15. Thank goodness
Mon Dec 9, 2019, 05:11 AM
Dec 2019

You came through and so lucky to have a great Oncologist.

Having spent time with others in rehab who feel as you do I can only say I feel.

The good news for you is that a hip replacement is easier to recuperate from than a knee.

You have endured much but came through like a Trooper so you deserve

Praise!

diva77

(7,606 posts)
17. so glad you're in remission! and glad that your oncologist & daughter were there to save you!
Mon Dec 9, 2019, 05:17 AM
Dec 2019

and thanks for the very detailed explanation and persistance at the keyboard despite the physical setbacks...such courage! All the best for continued healing...we need you around to help hold down the fort!

Scarsdale

(9,426 posts)
18. Welcome back.
Mon Dec 9, 2019, 05:50 AM
Dec 2019

So sorry to hear about your health problems, but glad you made it through. It is a disgrace that this country does not have Universal Health Care. Other countries take care of their citizens with health coverage, we should too. You have not lost one bit of your sense of justice and intelligence, that is obvious. Keep up the good work. Your daughter is a good person to fight for you, too.

pnwmom

(108,925 posts)
20. Sounds like a nightmare. Good for our wonderful daughter, being able to advocate for you.
Mon Dec 9, 2019, 05:58 AM
Dec 2019

I'm glad you're home now!

calimary

(80,700 posts)
21. What an ordeal!
Mon Dec 9, 2019, 06:06 AM
Dec 2019

Thank you so much for the update - we had no idea! Thank goodness you’re in remission now.

Sending much love and lots of healing vibes as the holidays approach. Here’s wishing you steady improvement for Christmas! And DU is really great at keeping you company. Our own Skittles put it perfectly awhile back: “someone’s always here.” That reminder certainly has kept me company from time to time.



chia

(2,235 posts)
22. Best wishes to you. You're quite the fighter!
Mon Dec 9, 2019, 09:30 AM
Dec 2019

So glad you had your daughter as advocate, may the road rise to meet you as you continue back to full mobility.

Fla Dem

(23,352 posts)
24. Omg, what an ordeal you've been through
Mon Dec 9, 2019, 08:13 PM
Dec 2019

It sounds like you’ve turned the corner. Yes? I hope so. All the best for your continuing recovery and a great holiday season for you and your family.

HeiressofBickworth

(2,682 posts)
25. 12/9 UPDATE
Tue Dec 10, 2019, 12:19 AM
Dec 2019

Good day today!

Granddaughter took me out to lunch for my birthday. Earlier this year, it was looking doubtful that I would be around for this. It was the first time I've been to a restaurant since I got sick. Using the walker wasn't a problem. Had an omlette and it was good. I also ate the pancakes. I've lost 50 pounds since I got sick so I decided no calorie watching for me today.

Later today my daughter came up behind me and said there was evidence that my hair was coming back. A couple of months ago she had confirmed that I was looking like Gollum (Lord of the Rings reference for non-fans) so this was good news.

And best of all were all the good wishes from you DUers. Thanks!

Karadeniz

(22,283 posts)
30. You sound remarkably upbeat considering the wringer you've been through! I hope the
Tue Dec 10, 2019, 12:56 AM
Dec 2019

Treatments do the job for you...and welcome back!

HeiressofBickworth

(2,682 posts)
33. Upbeat?
Tue Dec 10, 2019, 01:34 AM
Dec 2019

Maybe thats why I waited so long to post. Needed to get some distance from it before posting negatively. Just don't get me started on my experiences in rehab. Suffice it to say, I was delighted to learn that the facility is being investigated by state licensing authorities. Thanks for the welcome back. Glad to be here!!

KT2000

(20,544 posts)
35. glad you are back
Tue Dec 10, 2019, 02:56 AM
Dec 2019

What an ordeal you have been through. Sounds like you had good doctors after the initial confusion. Know a few good folks who have had hip replacements. I was shocked at how fast they recovered and they got rid of the pain immediately. Here's good wishes for you too!!

lark

(23,003 posts)
38. Weird that a fall could have saved your life?
Tue Dec 10, 2019, 10:48 AM
Dec 2019

So glad you are in remission and can use your hands again. I know what it's like to be "less than" due to 2 concussions in 6 weeks, I wondered if I would ever be able to read again without killing headaches. Well, it's 9 months later and I have (most) of my brain back and can read and write on electronic devices as much as I want. Steps forward, one step at a time, down the path to health. That's what I focus on.

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