Meso Discussion Group

Re: Introduction

sandybrust — Sat, 05 May 2012 01:34:38 GMT

I am new to this forum also. Dr. Tsao gave me this website on 5/2/12. I also have peritoeal meso that originated in the lung. My last chemo was 4/19/11 and I am still going pretty strong.
The anti-nauseau drugs worked very well for me. The worse days hit about day 3 after chemo and I would say maybe 2 to 3 days of feeling pretty rough. I am also a wife and mother age 47 and my attitude is to keep doing what I have been since before this nasty disease. My daughter is 13 and keeps me motivated.:) You are in excellant care with Dr Tsao. She really cares! I hope to hear more from you.

Re: Introduction

ripiper — Wed, 02 May 2012 00:18:14 GMT

Hi Caroline. I too am new to the blogging, and like you, looking for support. My husband was diagnosed last July, did Chemo end of Juny-end of Oct and so far doing pretty well. But there were times after the first couple of sessions that he was ready to quit. He had constant nausea but no vomiting. His anti-nausea meds worked for @ 3 days (the IV ones) then just crashed, and ended up in ER for more IV meds and fluids as he couldn't eat or drink anything. Someone told you earlier to stay hydrated, but don't beat yourself up if it gets so bad you can't drink-get ahold of your dr right away. Ours just set Dennis up for IV fluids/meds on Day 4 for the last 2 sessions. I guess some people tolerate the chemo w/few side effects-Dennis never lost his hair, but as hes pretty much bald since his 20's that wasn't a big deal. Buy a pretty wig just in case-many hair salons keep or get wigs for women having chemo, and ACS helps, too. I'm open to being called-Mary can give you my #. I'm in Alaska. Rose

Re: Introduction

Mifox1956 — Tue, 01 May 2012 17:06:51 GMT

Happy to meet you Caroline, anything any of us could do for you, don't be afraid to ask. We have all been where you are, and the more information you get from people here, the less bleak the situation becomes. Stay strong Mike

Re: Introduction

Psalm4:8 — Mon, 30 Apr 2012 19:39:26 GMT

Hello Caroline,

Welcome. Just about 2 years ago this time, I had HIPEC surgery for peritoneal meso & am currently cancer free. So glad you are here. We all look forward to getting to know you (& your husband).

God bless,

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

Re: Introduction

ck4au — Mon, 30 Apr 2012 19:31:48 GMT

I apologize; my name is Caroline and I am in Alabama. I usually do not share that information online but I have to shift my thinking since this is a support group not a random internet board. I appreciate the quick replies already. I am especially excited to see both long-term survivors (for me) and caregivers on this board. My husband may want to talk to some of you. It has been more than a little overwhelming as we try to wrap our minds around this diagnosis. I look forward to getting to know each of you and your stories as I take this journey.

Re: Introduction

richard_3 — Mon, 30 Apr 2012 10:51:41 GMT

Hi there ck4au,
Mike is spot on. This community is very first name oriented. We're more of a family as you will find out very shortly. We all know and support each other in so many different ways. Let us know where you're from. Many times a patient in your area will visit or call to support you. Dr. Tsao has been involved with us for some time now, and is on our science advisory board.

Instead of overwhelming you now, best to do what others have said. Call Mary. If you need to talk to another warrior, Mary can put you in touch with the right one.

We're here for you 24x7 to give you Hope and Support. Keep posting, we'll keep responding.

Oh, forgot to tell you. I'm another peritoneal long term survivor.

Re: Introduction

Mifox1956 — Mon, 30 Apr 2012 04:32:26 GMT

Hi and welcome to the community where you'll find many caring and knowledgeable people. You are definitely at the right place. I am the caregiver for Lisa, who was diagnosed with peritoneal mesothelioma 6 years ago this March. She has underwent many proceedures, chemotherapy once, and had HIPEC twice. What Bonnie is telling you is VERY important, especially about being proactive and taking all of the nausea meds as scheduled during chemo, even if you don't feel like you need them at the time. If the nausea gets ahold of you it is very hard to get it back into control. As a peritoneal patient, if you are taking opioids for pain control, make sure you are taking stool softeners to combat constipation. Also, know that fatigue will start to set in, about the time of your third session, and it is cumulative, but does seem to go away after completing all the courses. Last and should of have been first- CALL MARY- she has information for just about any and all situations and can help you through any problems you will have. Good luck, and keep posting, this is a journey that we all are going through and we are here for each other. Stay Strong Mike.
Oh yeah, could you please post your name, makes it alot more personal. Thanks. Mike

Re: Introduction

olewarhorse — Mon, 30 Apr 2012 03:48:20 GMT

Do get a book we call it our bibles for all the info questions you need. a few pointers on chemo. Stay hydrated, drink suck ice pops. If nauseated be pro active in taking those meds. Not after nausea. As nurse for emlay creme for ports about an hour before treatment. Numbs skin well. Read up on side effects and advocate for yourself. Sometimes tastes and smells affect patients. Each patient has different reactions and has to learn the best way to deal with them. I ate peaches for a year and made my husband buy clothes detergents etc with no smell. Think of it all as a journey and rest when you need to.PJ days are common for some.
Don't forget to call Mary.

Re: Introduction

janet g — Mon, 30 Apr 2012 01:03:16 GMT

Welcome to the community! Bonnie is very correct, you're first move should be to call Mary H. our guardian angel. Also known as the foundations nurse practitioner.
I am not a meso patient so I can not advise you in that way. I am the Mom to & was caregiver for my daughter who is a peritoneal meso survivor. Lacey's has been NED [no evidence of disease] for 6 years.
I'm sure you'll soon have responses from several of our warriors & their caregivers. Many will be willing to talk to you privately. Just ask Mary for contact info, or allow her to give yours. I am available for personal contact if you or your family wants to talk.
I will pass along the first advice I gave to any new patient. You may find it very helpful to begin a journal. Meso treatment can, in some cases, be a complicated, long process. Stress, chemo, other meds, etc. can make concentration & memory less than ideal. Many have found it very helpful to keep appointments, meds, test results, questions for the doctor & the answers all in one place. Lacey's journal was so much a part of her treatment her Dr. soon just asked for the journal, read her questions, checked notes on any drug reactions & then gave his answers, jotting them down if we wanted!
You've come to the right place! As with all here who live with meso, you & your family are in my prayers.

Re: Introduction

olewarhorse — Sun, 29 Apr 2012 23:25:11 GMT

Hi and welcome to the meso community. Dr Tsao was right, this is the place to come. First go to the phone and call Mary Hesdorffer our wonderful nurse (number on the home page) who has had extensive experience in meso. She can answer all your health questions and concerns. She also has phone numbers of patients who can speak to you privately.
I am a peritoneal survivor treated in NY, in a clinical trial that really helped pave the way for current treatments and knowledge; however being much older than you (ah 31) there are a few more recent treatments and some younger women (mothers) that have been through this all.
So far you got your post out here in view. There are older posts which were put up on things to expect. I will look for them and get back to you.

put caregiver tips into the search box and the old post will pop up. Believe!

Introduction

ck4au — Sun, 29 Apr 2012 21:13:17 GMT

I'm not really sure how this forum works, so I thought I would do an introduction and hopefully meet some others going through what I am experiencing. I am a 31-year-old wife and mother who was recently diagnosed with peritoneal mesothelioma. I had pretty major surgery on what they initially thought was ovarian cancer, but when I was diagnosed with meso, my doctor sent me to MD Anderson Cancer Clinic in Houston. Dr. Tsao gave me this site as a resource and I am currently trying to learn all I can about the disease. I should be beginning my chemo in the next couple of weeks. I hope to find a community here of others who understand.