Jump to content

What's next?


MarkVR

Recommended Posts

Hi all, long time since I've posted. Had a PET the beginning of May, showed some disease progression. They stopped the chemo and suggested I let my body recover from all the abuse from the chemo. Well, later that month I had some SOB and a chest x-ray showed some more pleural effusion on the right side. Did a pleurodesis to seal the right side and got a clean picture a week later. Basically the viewpoint from the docs is I'm terminal, 6-12 months. After a lot of discussion, decided to finally take our trip out west in our motorhome. Gathered up all the medical records I could and left mid June for San Diego. Meeting with the Navy hospital folks for a complete re-evaluation. Experienced a lot of back and side pain throughout the trip, but we enjoyed it. Had a another chest x-ray last week and it showed fluid on the right side again. Very weak and a lot of SOB, can't even take the dog for a short walk anymore.

Getting very discouraged......PET scheduled for tomorrow, full body bone scan scheduled for Thursday, another appt Friday.

Later,

MarkVR

Link to comment
Share on other sites

Mark,

I am so sorry that you are going through all this pain. But please don't give up hope! My husband also has sclc and he has had to stop because of chemo side effects. I know that there are alot more options for you, you don't know what your tests will show. I feel that you live moment to moment, treasure the good and let the bad ones pass....Also you can come here and vent, babble on...whatever. Prayers are coming your way for you.

Grace

Link to comment
Share on other sites

Hi Mark,

Further down on the board, under New Treatment, Medications Clinical Trials, “blaze 100 made an interesting post. He gave the following link: http://www.healthtalk.com/lungcancer/pr ... page02.cfm . Near the end they talk about Thalidomide and SCLC. Perhaps Thalidomide or another experimental treatment maybe worth considering.

Keep searching. Good luck.

Link to comment
Share on other sites

Hi Mark,

Good to see you post again!

San Diego is gorgeous, isn't it? Glad you got to go.

Don't give up hope. It is easy to see how discouraging this is. You have had a whole lot of treatments.

I agree with the others about looking into a study, if you are up to it.

Hang out here, too. See what we can come up with.

Cindi o'h

Link to comment
Share on other sites

Mark so glad you posted. I was wondering how you were doing.

Wow that was a long motor home trip the whole with of the country. Don't dare ask what your gas bill was! Bet the trip was great. I have not been to San Diego for years, it was a great place to visit , the best Zoo I ever saw.

Sorry to hear how short of breath you are. I bet the dog wonders why you are not out walking him. Any chance you can get a motorized chair to walk him?

Please post how your tests come out and what the doctors next plans are.

Donna G

Link to comment
Share on other sites

Mark,

I am so sorry that things are so hard right now. I cannot get over how cancer just takes over our lives. There is so much wait, so much unknown, and so much stress that goes along with this.

I don't have any info for you, but wanted you to know I am thinking of you. I pray that all goes well, and that the Navy Docs find something new to do. God bless!

Jen

Link to comment
Share on other sites

Mark,

Sorry about the problems. Glad you took the trip though. I'm surprised to hear that the right side is re-filling after you had the sealing procedure. Makes me curious...

The SOB and weakness thing really bites. Tony started a chemo holiday for similar reasons -- the side effects were running him into the ground. Right after he stopped the SOB started. He keeps getting tapped and has been on low dose steroids for a few weeks now. Just a week and 1/2 ago he took an upswing for breathing. He had been so frustrated about not being able to walk from one room to another without gasping and now he is going to the grocery store, etc. Life seems a little more "normal" again and he's flying high. (The steroids aren't hurting either! :D ) Sooooo, maybe with some time away from the chemo you will start to see that recovery process move into high gear too.

Praying and hoping for great times ahead and good news at the Naval hospital.

Warm regards,

Welthy

Link to comment
Share on other sites

Mark...so very good to hear from you! I can just imagine what a beautiful trip that must have been! Hopefully your consultation will reveal some new clinical trials that may help a lot. I'll be keeping you in my prayers!

Link to comment
Share on other sites

Mark,

sorry to hear this update, but so glad to see your post.

I am sending lots of positive thoughts for the upcoming tests and some treatment options to be available to you.

Rest and rebuild your strength during this chemo break, and don't lose hope.

I hate the word "terminal", because in reality, we ALL are terminal. And there is no possible way that doctor can predict what your body will do or how it will respond to new treatment, so please don't put alot of weight in the 6-12 months.

Knowing these folks on this messageboard has proved to me how wrong those prognosis can be.

Keep us posted, as we keep you in our thoughts and prayers.

Link to comment
Share on other sites

Mark,

I grew up in San Diego, it is absolutely beautiful. My Dad was a career Navy man and he'll never forget the sound my wrist bone made when the doctors at the Naval hospital cracked it completely to set it for a cast. I was around 10 when I broke it, the wrist is just fine now :D .

Last year around this time there was a poster by the name of sealbeachjim who has survived small cell since 2001. His story was similar to yours and as of a May 2006 update on his website, he's still doing well. I strongly encourage you to visit his site at: www.survivingsmallcell.com

He benefited from alternative treatments at the Oasis Center in Tijuana. As you probably are aware, Tijuana is just over the San Diego border. If a second opinion at the Naval Hospital renders a similar prognosis, it may be worth the short jaunt to see what the clinic can offer you. Jim and I corresponded briefly and he appeared very sincere.

He only posted four times. If you do an author search on this website for sealbeachjim, you may find all of his posts were very encouraging.

It's certainly worth looking into and you're in the right part of the country! He responded quickly to my emails, he'll probably do the same for you. Best of luck to you Mark, as others have said, keep up the hope.

P.S. If someone else in the class can get an "A" (sealbeachjim) you can too! :)

Link to comment
Share on other sites

  • 2 weeks later...

Just got this news in an email from my husband.

We lost Mark last evening.

PMA-290 Team, it is with very deep sadness that I convey the news of Mark VanReken's passing. I have been in touch with CAPT Rixey. Our office will be there to support his family.

Mark passed away last night @ 11:30pm PST in San Diego due to complications from his cancer. Mark put up a very brave battle over the last year and he knew the gravity of his situation when Kris and he left for their west coast trip.

CDR Leon Bacon will be the primary POC to interface with Mark's family. We will pass news about the arrangements when we get them.

Please keep Mark, Kris and his entire family in your prayers.

Link to comment
Share on other sites

I'm so sad to read this. Here he is posting on 7/9 and talking about his next gameplan and bang. I REALLY, REALLY, REALLY HATE CANCER. At least he got to go on a roadtrip and hopefully enjoy it somewhat.

Prayers for Mark's family and for Mark. God bless you. You put up a good fight.

Joanie ((()))

Link to comment
Share on other sites

Urgh!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I am so, so frustrated. I don't even know what to post...

Eternal rest be granted unto him oh Lord, and may your perpetual light shine upon him always.

My prayers are with him and his family.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.