Update on Bill (Updated June 27th -- last one for this post)

[Welthy]

Teri,

The pain from rads to the chest start well into the therapy -- sometimes even after they stop the radiation. My friend with SCLC did fine through her radiation (chest & brain - spot & WBR) then BAM! She could hardly swallow, had horrible esophageal burning, etc. She would throw up practically anything she put down. They gave her meds to quell the stomach issues and something to drink that would numb her throat before trying to eat. She lost a lot of weight and our other friend would just hammer her to eat, eat, eat & drink, drink, drink. (My other friend was a double-mastectomy bc survivor who did a lot of throwing up during her chemo years ago. We call her "Sarge" )

She would tell her that even if she throws the food or drink right back up, at least something might "get through" to add more calories to her system.

Maintaining weight is paramount to fighting lung cancer. Having lost over 8% of his body weight before diagnosis, Tony weighs in EVERY night. We have learned to pick up subtle changes and patterns during his chemo, progression, and pleural effusion issues.

That said, the pain from the radiation for my friend passed within a few weeks and she was able to eat somewhat normally.

Tell Bill that I don't want to come out there and open a can of whoop-*ss on him!!

My best always,

Debi

[Nova]

The exact same thing happened to Harry during radiation.- (and his chemo was put on hold for a bit too--he was just too sick to get it).

He didn't have any side effects until about a week after the radiation treatment started, then became the same as your husband.... Absolutely no appetite, weight melting off by the day, nauseated, sleepy, etc. He lived on popsickles, and even those hurt, because they were cold.... We made Instant Breakfast with half-n-half instead of milk, for the extra calories, but he ate so little, that I started to think he would starve to death....

It WILL get better though. I wish I could speed up time for you guys, so it could be over with...

I'm thinking of you both, and saying a prayer.

Nova

[Judy-OK]

Hi Teri and Bill. So glad to see an update. Excuse my post on the sclc forum asking about him. Connie pointed me in the right direction. There are so many different forums I sometimes forget to check them all. The radiation and chemo together is difficult and I hope they find a way to make it to where he can eat. I know that nothing tasted good and there was no desire. Great that the radiation is working on the tumor.

[daddyslittlegirl]

Shrinkage is good. How about some boost shakes to help with the weight loss??? I'm praying you get some good news soon!

[blueeye]

Mom had the same issues. The radiation+chemo knocked her on her butt! Her doc started her on Carafate right from the beginning for the throat pain and it worked. She also still takes Lidocaine viscous solution.

I was told that you had to take a huge number of pills of the megace to get the right dose because it didn't come in strong enough pill form. Mom refused the megace because it didn't work with my Dad.

Hang in there!

[lc46]

Teri

I'm sorry to hear Bill is not feeling well. My Mom just got done last Friday her 36th Radiation treatment and felt fine up until the last day. It got to the point this week that she couldn't even swallow her saliva and had to be admitted to the hospital. They put her on morphine and a pain patch and she is doing a little better. She said the pain was unbearable.

Keep us posted.

Dar

[teriw]

Thanks so much for all of the invaluable information. I feel like I'm armed with your collective experience for when we see the doctor tomorrow. We don't have an appointment with him, but I'm going to insist that we have to see him. Now that I'm hearing other people suffered the same symptoms, I think we're both somewhat relieved to know they're not completely uncommon.

What's really annoying me is that I don't understand why the doctor didn't tell us all the different things Bill could expect, and to get us sorted with meds ahead of time.

He's having some nausea, but the insurance won't cover a refill on the Zofran because it's been too soon (they only give him 9 at a time as it is). It just seems wrong that someone should have to suffer through something when there is a medicine available to alleviate it.

You're all awesome -- thanks for your time, your thoughts, and support.

[hockeyma]

I am glad to hear the radiation is working. I pray that you can get his weight back up and keep his energy level up. All the best and stay strong. Heather

[laban]

Teri,

It is so amazing that Bill went through the exact same symptoms last Memorial Day Weekend. He ended up at the Dr office on Tuesday and got IV fluids including antibiotics and medicine and did feel somewhat better. I know it's hard to see your normally strong husband so sick but he will get through this, I promise. Hang in there, both of you.

[kaneohegirl]

Im actually gonna ask the pharmacist if he can flavor the megace like they do childrens meds that taste bad... Im told grape is a great coverup...

[blueeye]

Teri,

We have applied to get Zofran for free from the manufacturer. Have you tried them? (That stuff is awesome BTW) I went through the social worker at the oncology clinic.

And I forgot to tell you that the pill Megace is on the $4 list @ Wal-Mart but it's not a very strong dose. Please let me know what they give him. I'm interested in Marinol but I don't know anything about it.

[wondermom]

My mom also had a problem with her appetite. She was prescribed the liquid Megace and couldn't get it down. She then switched to the pill form. As someone said in a previous post, you do have to take many pills to get the same dose as the liquid but it is worth it the get your appetite back. It worked for mom. She has to take probably 18 pills throughout the day. Six in the morning, 6 in the afternoon, and 6 in the evening. BUT...it did the job! Good luck. I know how hard it is to watch someone lose their appetite and energy.

[Welthy]

Teri,

I'm sorry that the radiologist was such a knuckle-head. He or his assistant should have done a "sit down" with both of you to let you know what to expect.

Did they at least give Bill a prescription for the ointment/salve to put on his skin to protect against burning?

This is terrible that the two of you had to suffer more mental anguish then necessary. It really cheeses me off! We all go through enough without adding more to the load.

Hope Bill is feeling better soon.

Welthy

[mary colleen]

Teri - "Managed Care"...means what?..."thrift for US"? Just fight. 9 pills in Bill's position is ridiculous. Thank God he has you. MC

[trish2418]

Teri,

Try asking your onc or the radiation doc if they have samples of Zofran. It may be a way around the insurance issue. And I agree, it's just shameful that a calendar should determine when Bill gets relief. Good luck.

Trish

[mitzu]

Ask MD and Insurance Co. for Anzemet. It's specifically prescribed for severe nausea. Much stronger than Zofran.

[fillise]

Teri--thinking about you and Bill. I hope the break from the chemo will help him get stronger and he will get his appetite back soon. I'm thrilled about the shrinkage!

Susan

[Welthy]

Kytril is also another good anti-nausea med. Good suggestion about asking for freebies from the doc.

Welthy

[teriw]

Hi everyone,

Got bad news today. Bill complained a few days ago of having vision problems. In denial, I attributed it to other things (like no food), but was frightened of the possibilities. I started doing all the driving and rearranged my work hours so I could take him to radiation everyday. I knew it must be bad when he agreed to that. Doc ordered a brain MRI. Got the call about an hour ago -- tumors on the brain. One in a serious location. Set to get setup for whole brain radiation tomorrow, starting on Monday. And this on the first night in many when he actually ate a proper dinner.

I'm in shock (so is Bill, although he seems more calm than me). I asked the doctor if this could actually get rid of it (in the brain). He said it could do that, but there are no guarantees. It could also arrest it for a long time. Or, I guess, it could not work at all.

If anyone has anything encouraging to say about a similar situation, please don't be shy.

[Mendy]

Teri,

This really bites. I am sorry and I sure hope the wbr does the trick. Bill sure is having a rough go of it lately. Not what I have been hoping and praying for. You are such a strong lady and have the care and support you are giving Bill is amazing. Hang in there!

Mendy

[ursol]

Teri,

I'm so sorry. When I received the call from my oncologist in December that I had brain mets, I wailed like a baby standing in my kitchen, I couldn't calm myself. I was very frightened and so was my husband. But within a couple days I convinced myself that it was just another bump in the road and I needed to fight harder. Stay positive and keep fighting. I have both of you in my prayers and thoughts.

Lilly

[mary colleen]

Oh, Teri.

I really do understand how you must feel.

Sounds like you are saying there are multiple mets, correct?

First order of business is to get neurologic symptoms associated with the mets (and any related edema) under control. I assume that he will be put on Decadron or something like it asap to help get a jump on that.

There are lots and lots of studies and abstracts on the web about brain mets and the various treatment options. As you probably know, Dr. West has lots of info on brain mets on his website as well.

I can tell you this: Vic is on his 7th of 20 WBR treatments, and has had no significant side effects yet. PM me if you want any specific info, an I will be more than happy to send you any links I have found to be useful.

Please take care - wish I could give you a giant dose of peace tonight. MC

[Welthy]

(((Teri and Bill)))!!!

What a shock! I am so very sorry to hear about the new mets.

I'm sure the two of you will face this new development in the same classy way you have fought the beast to date.

Many warm thoughts and prayers sent your way for good success.

On the plus side, it was good to hear Bill ate a decent meal! Way to go Bill!!

Welthy

[Guest Kaylei]

Teri and Bill,

I'm so sorry to hear the news about the brain mets. So far I've been treated for six and have recovered completely. Mine are stable, shrinking and some are gone. So even though there are no guarantees, there's hope as far as I know and what I've experienced. I had three treated last year and three this year. Last MRI in May shows no new mets.

You both are in my thoughts and prayers.

Kaylei

[Sis]

Teri,

So sorry to hear of Bill's setback. Sending prayers to you both. Ellie