Meso Discussion Group

Caregiver Programs

hollipop — Sat, 19 Mar 2011 12:43:47 GMT

Hi All,

Just was wondering if anyone knows if there any programs out there to assist caregivers that are unable to work so that they can provide full-time care for their loved one???? I have done some searching at the advice of a friend, but it seems the programs only exist for the care of elderly family members.

On a seperate note, we are off to see Dr. Taub tomorrow to start Davids first round of the new chemo drugs....

Love to You All

David a sweet sweet man

olewarhorse — Fri, 02 Nov 2012 03:32:17 GMT

It's kind of hard to post this.I don't get the FB thing right too often and check friends. David Lerman passed last week. For those who knew him he was always upbeat, inquisitive, and caring. We spent many hours speaking during his years battling meso. RIP my friend.

Latest CT on Lisa

Mifox1956 — Wed, 14 Oct 2009 20:18:16 GMT

Hi there all. We just got back from the onc. and Lisa's latest CT scan was good. It showed that her cancer was stable, with no change in size or quantity from her last CT in July. The one thing that she is still having a problem with is a lot of pain in the upper middle of her stomach. The onc, said that the CT did not show any thing that could be causing it so he is referring her back to a gastro specialist for an upper endoscopy to see what it might show. So that is next on the agenda. I do, however, feel an immense sense of relief that her cancer is stable. Yipeeeeeee!!!!!!!!!!!!!!!!! Stay strong, Mike

Lessons learned

janet g — Tue, 04 Sep 2012 14:23:19 GMT

When my daughter Lacey was getting treated for meso I learned to get personal copies of everything. We got test results, names/contact info, etc. as print outs or on CD.
My husband has recently had some very complex heath issues. His care is normally all through the VA. Last year we were sent "out of system" for a procedure. I failed to get personal copies of all that & it's been a nightmare!
This weekend an emergency situation had him hospitalized out of the VA system again. This time I did leave that hospital with everything printed out!
When I called his VA clinic this morning I filled the nurse in on what had happened. I told her I could hand deliver all his test results & recommended new prescriptions from the weekend. She was so stunned she actually asked me to wait a minute while she "gathered her thoughts"! She asked "you mean we don't need to call any doctor or hospital to request records?" Then she made us an appointment for TODAY to follow up!!! She says I've saved the VA & us days, possibly weeks, in continuing my husbands care!
Whether it's you or a loved one you care for, be the advocate. Get the records yourself, in your hands. If you don't need them, hooray! If you do you've probably saved yourself tons of wasted time & confusion!

Good new, SS1P update

harleyryder08 — Wed, 22 Aug 2012 22:11:14 GMT

For those who may not be following the foundation on Facebook;
I would like to share with you our news from today at NIH. Kristi's 3 month CT scans are even better than they were after the 6 cycles of SS1P. Which means the Immunology SS1P is still working and her immune system is fighting the cancer even now, three months out! We are all so over joyed and excited for these new treatments. Never give up HOPE!!! Thank you all for the prayers and support! The CT Scans only show a very small little bit that could even be scaring, they are not sure.

Lisa's follow up in San Diego

Mifox1956 — Thu, 26 Jul 2012 18:11:13 GMT

Hi there all. Over the last few days, I took Lisa back down to San Diego to see Dr. Lowy and have her drain looked at. He was a little concerned about the amount of fluid still draining but said that over all she looked good and that she could have the drain removed her at home when it slows down in the coming weeks, then back to the three month schedule for CT's. She is feeling OK, not great, but not nearly as bad as she was, with the ongoing pain issues a little better controlled. Prior to seeing Dr. Lowy, we spent about four days in Los Angeles doing the touristy things that we have never had the chance to do, the Sunset Strip, Hollywood, Beverly Hills, studio tour, air conditioned bus etc. All that was missing was a pair of shorts, knee high socks, hat and camera around the neck to complete the picture! Anyway, that part was enjoyable and was the extent of any traveling that we will do in the motorhome this summer, so it was memorable. Stay strong Mike

3 years

guykac — Mon, 30 Jul 2012 10:35:37 GMT

Guy has an appointment with Dr. Sugarbaker tomorrow. He just passed his three year mark !!! Fingers cossed, prayers said. Wish us luck !!!
Kathy

going on vacation!

ripiper — Thu, 26 Jul 2012 23:18:36 GMT

This is Rose and Dennis in Alaska, and our good news is that he is stable enough that his doctor said we are to 'go and enjoy' a vacation on the AK ferry system to WA, where we will see friends and family for a week, then come home. His mood is good-RBC is down to @ 30, but not low enough for a transfusion per our doctor, but we'll take it slow and easy, and spend time in the area we grew up (tho' not together) and where we met, dated and got married. Every day is a gift. We leave 7/31, and get home 8/13. Rose

cold sweats

Leah1225 — Sun, 15 Jul 2012 03:58:43 GMT

My mother was recently diagnosed with mesothelioma and we have not began treatment yet. She asked me if I could post to this website and find out what she can to do increase her comfort when her temperature drops and she begins sweating. If anyone could help us I would appreciate it so much. Thanks.

Pain Control

rockmart5 — Sun, 27 May 2012 19:59:43 GMT

Diagnosed in June 2002, EPP by Dr Sugarbaker of Boston same year. No tumor left but, nerve damage from surgery has left me with constant pain. Do any of you other people fight this same problem. I have tried opiates, surgery, nerve blocks, injections to try & kill the nerve chemically. etc., etc. Pain varies with whatever degree of activity I perform. Laying down equals dull ache, driving causes that to increase and so on. Tired of living like this. Any suggestions from anyone with same problem that has found a solution. Thanks for your help. Timothy Crisler

Larry Davis has passed

olewarhorse — Tue, 03 Jul 2012 03:49:39 GMT

Larry was a true fighter in his battle against meso. He was an inspiring man and will be truly missed by this community. Tonight I am sad over this news.

So this SUCKS

Mifox1956 — Sun, 08 Jul 2012 07:16:33 GMT

Lisa had a j p drain in her after her surgery and everything was going well until tonight. About 4 this evening she accidentally pulled the drain out. Naturally I panicked and called her Dr. In San Diego and got his chief resident who assured me that this was not an emergency situation, just to watch her and make sure no fever started or no new pain occurred, that her body should reabsorb the 55 - 60 ml her drain was putting out. Well, gues what, new pain shooting up to a ten on the pain scale so off to the local emergency room we went. They have taken X-rays and blood tests which we are waiting on as well as a response from Dr. Lowy. They have managed to get her pain down to about a five, so she managed to doze off. Anyone ever notice that crap like this never happens when the people you need are available. Always seems to happen like now, midnight on a Saturday night. Now it's just wait and see what they come up with. Really sucks when your Dr is 500 miles away. So many issues and drama to deal with, but we'll get through it. Stay strong Mike

Hi there all

Mifox1956 — Fri, 06 Jul 2012 02:44:00 GMT

Just wanted to give an update on where Lisa is at on her recovery. Things are going along pretty well, we did a quick trip to San Diego on Wed. to see Dr. Lowy and he is pretty pleased with her recovery so far. He removed one of the drains in her abdomen, the one for infection, yet had to leave the one that drains the area where part of her Liver used to be. It has slowed down to half of what it was, but he wants it to completely stop before he feels comfortable removing it. On another note, her energy level is higher than I have seen it in over a year, and her dependence on pain meds has decreased quite a bit, but not to the point of being comfortable with changing the regimen too much. All in all, the operation was a tremendous success in my book and leaves me hopeful going on with her battle with this effing disease that I am going to have many more years with the love of my life by my side. We will be going down to see Dr. Lowy again hopefully in about a month. Our plan right now is when all of our aches and pains have subsided enough, we are going to go a travelin'! Stay strong Mike

Guy & I

guykac — Wed, 20 Jun 2012 00:48:11 GMT

Guy and I celebrated our 40th wedding anniversary yesterday !!! Hoping for many more.
Kathy

My treatment plan

Psalm4:8 — Fri, 29 Jun 2012 12:06:40 GMT

Hi Everyone,

Thank you for all of your kind words in recent days.   I saw my oncologist yesterday & here is what we came up with :

I will do 5-6 cycles of Alimta/Carboplatin (every 3 weeks). My first chemo will be a week from today.   After 2 cycles, I will get a Cat Scan.   Depending upon the Cat Scan results, I will either stay on the A/C or we will try Navelbine.

Again, thank you for all of your support.

George Landes -   Perito Meso (DX November 2009 / HIPEC Surgery May 2010 / Recurrence as Pleural June 2012)

Questions about surgery for pleural meso

Psalm4:8 — Wed, 06 Jun 2012 12:44:52 GMT

Dear Friends,

Thank you for your prayers & kind responses. Has anyone out there had any surgeries for pleural meso? I am weighing my options right now. My oncologist wants to start me on a chemo regime. He is not in favor of surgery at this point. My surgeon (who did my HIPEC but would not be able to do pleural surgery) is meeting with colleagues today to discuss my case.

Thank you,

George Landes - Perito Meso (DX November 2009 / HIPEC Surgery May 2010 / Recurrence as Pleural Meso June 2012 )

Latest & Greatest on George

Psalm4:8 — Fri, 15 Jun 2012 13:50:24 GMT

Hey Sports Fans,

I went to NIH on Wednesday to meet with Dr. Hassan & his team. I finally got to meet the wonderful Mary Hesdorffer! What a treat to finally see her in person. She was in on the meeting as well & a great asset!     Basically, Dr H feels like I should go ahead do some rounds of chemo with my oncologist, kindly Dr. Graze.    So, I see Dr. G in a couple of weeks to get that set up.   In the meantime, please pray for me as I have been feeling rundown & a bit flu-ish for the last few days.   Don't know if it is the cancer or the stress or what.

Thank you for the kind thoughts you have shared lately.    You all are the best!

Blessings to all,
George Landes -   Perito Meso (DX November 2009 / HIPEC Surgery May 2010 / Recurrence as Pleural June 2012)

Update for SS1P Results

harleyryder08 — Wed, 30 May 2012 23:43:51 GMT

Other than monthly blood tests the Next NIH Visit, 3 months from now. What a remarkable change from January when things were looking pretty bad! Dr Hassan is very excited and never expected the kind of results seen in Kristi's cancer tumors and how much they have been reduced! There wasn't much change from scans done after 4 to the ones just done after 6 cycles, but he is very very pleased! So, she goes into the "watch and see mode" for three months, repeat all scans/tests and see if it is staying stable, better yet, or ............... well we aren't even going there right now!!!

Thank you all for the support and prayers. Maybe we will see you all at the Symposium!

good news for a change.

ripiper — Fri, 01 Jun 2012 00:12:55 GMT

Den had a CT Tues, and there are no changes from the one he had 1/30/12! no new tumors, and the existing ones haven’t grown, so as his local doctor said-this is amazing and all good news. H hasn't had chemo since the end of October. There is some increase in the fluid in the mesentery, which may explain the increase in his belly and rib pains, we think. Anyway, we’re happy. Maybe we will be able to have short vacation in August-my only sister’s son is getting married, and Den said if he felt up to it, he’d like to do the AK ferry again-it’s 3 days each was in the Inside passage-just beautiful, and we love the forced quiet and relaxation. Regardless, we’ll have his birthday 6/24 and our 24th anniversary 7/22. Such a gift! Rose

Just got not good news

Psalm4:8 — Tue, 05 Jun 2012 15:20:35 GMT

Hello Friends,

Sorry to be away for awhile. Long story short -- My surgical oncologist had me get a biopsy on some suspicious lymph nodes. Results came back showing evidence of meso in my chest area. The peritoneal area is fine. Has anyone had peritoneal move to pleural area? The pathology report calls it metastatic malignant epithelioid mesothelioma. I am seeing my local oncologist this afternoon. And, I have been in touch in Mary who has, as always, been very helpful.

God bless all,

George Landes - Perito Meso (DX November 2009 / HIPEC Surgery May 2010 / Recurrence June 2012 )

Some good news

Mifox1956 — Fri, 08 Jun 2012 23:23:28 GMT

It looks like Lisa and I finally get to go home tomorrow. We had hoped to go home last Saturday but she had a setback in that her white blood count shot up to 36 and they couldn't figure out why. They started her on IV antibiotics but it kind of stalled out at 30. She had a CT scan done on Tuesday and they saw a pocket of infection in her abdomen that the drain she had wasn't draining. They inserted a drain and got out about 100 cc's of fluid which seemed to help. Her white count started dropping and today was at 21 so Dr. Lowy said that he could see no reason we couldn't go on home and come back to get the drain out in a week or so. We are so ready for that to happen after being away from home since the middle of last month. The really good news is that Dr. Lowygot the results back from pathology from the surgery and as suspected, the tumor in her liver was malignant, but he got all of it and the margins were negative. The best news to me was thatthemass that was on two of her lymph nodes in her pelvic area that I have been worrying about for the last three years were negativ, as was a spot on the abdomen wall. As of this it me Lisa is officially NED'S!!!! She will have to get scans every three months for a while, bit Dr. Lowy is really pleased with the result of the surgery. It was wonderful news and took a load off of us so we can go home happy. Sure will feel good to type on my own computer instead of a touchscreen. Until later....Stay Strong Mike

Gutted

lynnwilding — Wed, 06 Jun 2012 08:35:11 GMT

Well dad has been gone a couple of weeks now, the day before he died his wife asked me to go to uk with her to take his ashes, the day after he died she said she couldnt take me anymore as couldnt afford too, im gutted as i have no way of affording it as solo mum with 3 children, so in a few weeks he will be taken home and put with his parents and the whole family will be there but me.

Mary's testimony

mistertoadie — Thu, 07 Jun 2012 02:57:32 GMT

I watched Mary's testimony, and was surprised at the end when the man in charge said "well we're all aware of mesothelioma by Tv". What does that mean? To my understanding, that's only for attorneys to make money off people, not to raise money for research. Maybe I'm wrong, but it seems like Mr. Speaker thought that the legal ads were already paying for research. Anyone have any thoughts?
Diane

More thoughts and updates on Lisa

Mifox1956 — Sun, 27 May 2012 05:52:05 GMT

O.K., so I've had some time to cool off, yet am still po'd at one particular on call doc. I know, let it go and I will. One very valuable lesson learned: prior to any surgery, discuss the post surgical pain treatment regimen in detail with whoever is going to be administering the medications, and have plan b and plan c ready just in case the preferred plan a does not work. We found out the hard way that it is extremely important for everyone involved to know what exactly you are taking at home, particularly if you are taking high doses of narcotics on a regular basis and have built up tolerance to them. As a caregiver trying to convince medical personnel of this after the original plan( an epidural with dilaudid) has failed, is nearly impossible. Therefore make sure this is understood before it is needed. Sounds pretty simple, but with everything else going on getting ready for surgery we overlooked doing this. As a result, Lisa had to pay a very high price. On a more positive note, they have managed to get her pain down to about a level seven, which is still high, but coupled with being exhausted due to not sleeping at all last night, she is gently snoring away in her hospital bed in front of me. I am not leaving her side to make sure that they don't forget about giving her her meds on schedule, as this really tore me up to watch what she had to go through. I made a vow-never again will something like this happen. The squeaky wheel gets the grease and if I have to stand out in the hall and yell at the top of my lungs to get her what she needs, then so be it. She is one hell of a fighter, and is doing her part, so I will make sure everyone else does theirs. Thanks to everyone here on the MARF site for all the kind words and support. We love each and everyone of you and just know that you all make this journey a lot easier. Stay strong Mike

Quick update on Lisa

Mifox1956 — Tue, 29 May 2012 03:42:50 GMT

Lisa is showing some improvement, although her pain level is still pretty high. They moved her out of ICU late this afternoon to an intermediate unit (one step closer to the door and back home) where I suspect that she will be for about 4-5 days and then back home. Yipee!!! I am already getting tired of the hospital, so I can imagine how she feels. Anyway, hopefully tomorrow her intestines have woke up enough so that she can start eating again. That's the next goal, and from hereon out it should be normal progression. Sure do hope so. Stay strong Mike