Need suggestions...

[glo821]

My father was just diagnosed with NSCLC that has metastized to his adrenal gland, therefore surgery is not an option at this point. Before being diagnosed, he was under the constant care of his general practitioner with his only symptoms being weight loss (about 40 pounds in the course of 4 months), nausea and nose-bleeds. Because he had no other symptoms, diagnosing him was difficult. He underwent various tests, including CT scans, CT assisted lung biopsy, biopsy of the prostate and was evaluated by an Urologist and an Oncologist. After several visits that spanned the course of approximately four months, he was finally diagnosed last Thursday, August 7th. He will be starting chemo sometime next week. The treatment recommended was Carboplatin/Taxol/Avastin, once every three weeks for three cycles; at which time, they will do a scan and see if the treatment is working.

I have visited several forums and am amazed at the amount of compassion and knowledge of people that have first-hand experience in dealing with cancer, either on a personal level or helping a loved-one through it. Based on recommendations on forums that we keep our fathers head, hands and feet cool during treatment, I have placed an order for "Mira Cool" products, such as the bucket hat, do-rag, and various other Mira Cool items, that I found after doing a google search on personal cooling systems. You can see the web site here: http://www.tuffrhino.com/Cooling_Products_s/43.htm?Click=20&source=google&segment=productpage&paidKeyword=cooling%20clothing&adVariation=1&gclid=CMqlq_LPgZUCFSQtagodk2cZrQ

I plan on buying dry ice and putting it in a cooler in order to keep gloves and socks in it to keep those areas cool. I'm wondering if there is anything else you could recommend? Would these items be enough? Should I get something more? What else can we expect from his receiving this treatment? What can we do to make this easier on our father? Also, what can you tell me about the Budwig diet? Is there any truth to the assertion that the diet can help with the prognosis?

As you can imagine, we are all very scared. My father is a very stoic and proud man that we love dearly. He is also the best patient anyone could ask for because he will do whatever it takes to feel better. We're hoping to make the transition into treatment as easy for him as possible; therefore, if you could make any recommendation or suggestion, it would very much be appreciated.

Thank you so much for taking the time to read this post.

Gloria

[SandraL]

Hi again. I don't have any further suggestions on the "cool" stuff but am sure others will. It sure sounds like your dad is in very good loving hands though. You will make his journey more tolerable in many ways. Prayers to both of you.

Sandra

[recce101]

Hi, Gloria. I answered in some detail in another thread, but I just thought of something else. The Taxol/Carboplatin/Avastin infusion sessions are quite long, several hours, especially the first one or two. My son surprised me by showing up at the clinic with a brand new portable DVD player and a couple of entertaining movies. I appreciated that more than anything I've received in years, and by now I have a pretty good collection of DVDs.

Aloha,

Ned

[glo821]

Hello Ned, and thank you for your responses. I have read your story in the cancergrace.org website, and feel as if I know you! Isn't it odd how this disease (as horrible as it is) can bring people together?

Thank you for your suggestions. I just got a call that my father will start his chemo on Thursday morning at 7am, and will last for 5 hours. We are going to make every attempt to make this transition as easy as possible for him.

Thanks again!

[cat127]

Maybe your dad will be like my sister and sleep through most of it. I bought her an ipod and her daughter brought home her DVD player, and neither of them got used. Kelly usually brought a book, but most times she fell asleep from the benadryl pre-medication. One time, she snored quite loudly.

The first few weeks are very loaded with anxiety, but it does get better. That first day of chemo, my sister was really scared. The look in her eyes had me so very upset. But once she got over that first day hurdle, she was a pro and it was never a tough thing for her to go in and get her meds.

Your family will all feel better after you get over that hurdle, I promise!

[glo821]

Thank you Cat for your response. You're right, we are all filled with anxiety. Dealing with the unknown, and with something as huge as cancer, that has such a horrible reputation, is very stressful.

Here's to good news for your sister in September! We must do what we can to get rid of this horrible disease.

[Patti B]

Gloria-

I answered on your other post but wanted to add something here. I started on the Carbo/Taxol/Avastin regimen almost two years ago. First treatment lasted about 6 hours. Each time you go, the sessions get shorter - they need to know if you are going to have an allergic reaction or not so they infuse it slower in the beginning.

I know I had that deer-in-the-headlight look on my face when I walked down the hall to my chemo room on my first time. Think thats to be expected. Fortunately, I had the sweetest, nicest chemo nurse who really calmed me down. I, too, used to sleep a lot during my chemos because of the Bendryl pre-med - I even woke myself up once with one of those snoring snorts!!! LOL!!! And it does get better each time. I know its hard for someone to think that getting chemo gets easier, but it does. You become a pro after a while!!

Wishing your dad lots of luck and an easy first day of chemo. Please let us know how he does. He is so lucky to have you by his side.

Give dad a hug from me!!!!

Patti B.

[Nancy B]

Hi Gloria,

I am in CA too. I usually caught up on my reading duri ng chemo cycles or dosed off. My chemo room has TV's and DVD players, but I am always behind in my reading.

Just curious. I haven't heard about keeping the head, hands and feet cool. I had Carboplatin but not the other two chemos. I usually have to ask for a blanket as they keep the room so cool. I am on my ninth year - NSCLC first in 1999 and no recurrence of it - then in 2004 they fround SCLC - been working on that ever since. I am doing good, still on chemo.

Let us knowf what we can do to help you. Maybe you could PM me and let me know where in CA - maybe we could get together. Take care and let me know if I can do anything.

God Bless

Nancy B

[glo821]

Thank you Nancy and Patti! I am again humbled by the outpouring of love and support from this community.

You're right Pattie, I think its the fear of the unknown that has us running scared. This disease has such a terrible reputation. I'm just hoping that it gets easier and that this treatment works.

Nancy, I am in the Los Angeles area. Where are you? I also wanted to say that I am in aw of your determination and hope to find 1/2 your strength to help our father (but mostly ME!) through this. I'm so scared.

[Surveyor]

Hello glo821. I just noticed your post. I’ve been AWOL for the last year – just tired of even thinking about the battle. Your father’s diagnosis is very similar to mine. After your father completes chemo, I would suggest you get a second opinion. There is some evidence that a single metastasis to the adrenal gland may be operable with good survival results. I did a Google search just using “NSCLC adrenal” and found a couple of published opinions stating this fact. http://cat.inist.fr/?aModele=afficheN&cpsidt=17208182

http://meeting.chestjournal.org/cgi/con ... 0/4/274S-b

http://sciencelinks.jp/j-east/article/2 ... 070096.php

I’m sure you can find more opinions to justify an aggressive approach to his cancer fight.

[glo821]

Hi Surveyor,

Firstly, I would like to apologize for responding so late. I haven't really had a chance to be online since I read your message on Friday. Thank you for your advice. I spoke with my sister and we both agreed that we are going to follow your suggestion. My father is scheduled for his second chemo treatment on Thursday 9/4, and he'll have his last one scheduled three weeks after that. After the last scheduled chemo treatment, they're going to assess whether or not the treatment is working with diagnostic testing. We're planning to request a second opinion after that.

My father has been doing well. He tolerated his first chemo treatment with very minimal side-effects. The only gripe I have with him is that there are days that it is literally a battle to get him to eat something. I understand that his appetite is compromised with the cancer and all, but he needs to gain weight, or at the very least sustain the weight he's at now. We're afraid that he won't be able to take the chemo treatment if he doesn't have sustenance, you know?

Any suggestions would be greatly appreciated!

[recce101]

The only gripe I have with him is that there are days that it is literally a battle to get him to eat something. I understand that his appetite is compromised with the cancer and all, but he needs to gain weight, or at the very least sustain the weight he's at now. We're afraid that he won't be able to take the chemo treatment if he doesn't have sustenance, you know?

Compromised appetite is just part of the eating problem. Here's something I wrote to another member a year ago on the same subject:

http://lungevity.org/l_community/viewto ... 878#316878

You're right, you gotta pack those calories in one way or t'other. Aloha,

Ned

[glo821]

You're right, there are certain things he gravitates towards. Right now, it's ice cream. He likes the way it feels going down his throat. He's UP TO HERE with the Ensure's though. A suggestion we made to our mother was to make an Ensure shake for him tomorrow morning.

What do you think about pasta's? would they be good?

P.S. Thanks for the linked post. It gave me a much clearer understanding of what my father must be going through. I'm going to share it with my sister.

Thank you!

Gloria

[SandraL]

Hi Gloria. Anything that he likes and will eat is good...higher calorie stuff like pasta is even better. I was always told though that while going through chemo the most important thing to do is drink drink drink. So focus on that as well and once he gets through chemo you can focus more on the eating, weight gain and getting his strength back. It is good to hear that he is getting through the treatments okay. Continued best wishes

Sandra

[dchurchi]

Hi Gloria,

Although my husband had small cell LC, the appetite issue is the same for most. I used to say the Alan had "pregnancy cravings" as he would want the stangest foods, but the minute has stated he was "hungry" for something I went out and found whatever it was.

Also, if you just set "finger" foods that your dad can just reach over and eat, you might find he does it with out even knowing he is eating. Like your dad, Alan got to the point of flat out refusing to drink any more Ensure. Many others have said Carnation Instant Breakfast is tasty and has lots of calories. Alan would eat pudding cups ect. At times even the process of chewing could be exhausting, so anything that could be just swallowed was what Alan would want.

My prayers go out to you and your family.

[glo821]

So, my father is scheduled for his 2nd chemo treatment on Thursday. Since his first chemo treatment 3 weeks ago, he has lost 10 lbs. He's weighing 145, and has NO appetite. He tries, with the ensure's, and the ice cream, but on a good day he's averaging about 1000 calories. He had blood work done and is now anemic. His white blood cells are also low. His doctor said that if he continues on this path, his body will not be able to take the treatment. So I'm wondering if anyone has any suggestions on how to get my father to have some kind of appetite? Is there anything I can try? How can I prevent him from losing any more weight? Is there a pill? A juice? A meal that's STACKED with calories? Please help!!

[recce101]

Gloria, one medication that's sometimes presecibed as an appetite stimulant is Megace. I don't have any first-hand experience with it, but others on the board have said it's been helpful. Here's the manufacturer's website:

http://www.megacees.com/

It's understandable that the Ensure is getting old. Have you tried some of the Carnation Instant Breakfast flavors mixed in milk? Much tastier than Ensure or Boost.

Do you think appetite is really your dad's main problem? Does he also mention pain or irritation when swallowing? I recall in your first message you said he is "stoic," so even if pain is causing him a lot of difficulty he may not choose to say so and may prefer to simply say "not hungry." I won't get into the psychology of why some people (mostly men, I think) are that way, but will say that my father-in-law was one of them. A tough little guy of Japanese ancestry and definitely the samurai type.

In extreme cases, especially when radiation treatments have caused the esophagus to be very painful and constricted, a PEG tube can be inserted to allow liquid nourishment to be delivered directly into the stomach, bypassing the mouth and esophagus. When the patient is able to resume eating normally, the tube is removed:

http://www.oralcancerfoundation.org/den ... eeding.htm

I have a couple of friends who received most or all of their nourishment through a PEG tube for several weeks during radiation therapy, and I wouldn't hesitate to get one myself if need be. I don't recall if you mentioned your dad's age or general health, but just wanted to make sure you were aware of that option.

Best wishes and Aloha,

Ned

[glo821]

My father had his second chemo treatment today. He almost didn't have it because his doctor said that he had lost too much weight (10 lbs in 3 weeks), and his white blood cells were too low. After some monitering, his white blood cells elevated enough for him to undergo the chemo. He was prescribed the Megace (sp?) for his appetite.

Because he had one episode of bleeding from the mouth, the Avastin was removed from this cycle of treatment. After his second dose, his doctor prescribed Nupigem injections 1 injection a day for seven days to boost white blood cells.

I was wondering if anyone had heard of this treatment? Has anyone had any experience with it? Good? Bad? Just trying to get as much information as I can!

Thanks all!!

Gloria

[sharyn]

gloria,

I just wanted to say that your Dad is so lucky to have a daughter who is so involved in his treatment... (I am sure he already knows that). My prayers are being said for both of you.... Love, Sharon

[Don M]

Gloria, I noticed that when I took xanax about an hour before I ate, my appetite increased. It is an anti anxiety drug.

I hope the megace works for your dad and he can put on some weight now.

Also, I too have heard of people having surgery with just a single met to the adrenal. I think Dr. West can speak to that.

http://cancergrace.org/lung/

Don M

[Jeannie0613]

Hello Gloria

I want you to know that my husband has to go in every day following chemo for the WBC shot. We get off maybe 1 day a week. He has been on texotere and carboplatine since January. The last two treatments(which by the way are given to him weekly) his platlets have been low so he now is getting shots for that as well. So yes, I am with you, and I really haven't heard of many people this happens to. My husband also had the eating issues....megace did not work for him. They even tried Marinol. That did not work either. The only thing that keeps him eating and keeps the food down is the steroids. He is now weaned down to 1mg. I think that will continue until the chemo stops(which we are hoping another 3 weeks and then finished, finally!)

Good Luck and I hope you find something that works for him.

My thoughts and prayers are with you, your family and your Dad! Tell him to keep fighting and stay strong. Strength and determination can win.

Jeannie

[Jeannie0613]

Oh and Gloria....

My husband, Jim, got to where he couldn't keep food down at all so Ensure is all he could tolerate. He started loosing all kinds of weight. Well, I could not have that so I just started making ice cream drinks. I got Breyers chocolate ice cream poured in two cans of ensure(instead of just milk) and added protein weight gainer as well. It worked he started gaining some of his weight back. Now he eats everything in sight but at this point he is at a stand still and I believe that is due to the chemo. Because he still has shakes, smoothies plus big macs My honey has an appetite and at this point I let him eat whatever his heart desires. He used to weigh about 240 he weighs 169. At his lowerst he was down to about 150. Try anything. I even would make smoothies. He loved strawberries, bananas, pineapple, raspberry and yogurt. I would make a couple of these a day. He still loves them, even though now he can eat. Keep trying and don't give up. You will find something.