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Hey Glenna, How's it going for you?

pennynl4
Posts: 49
Joined: Jun 2009

Hi Glenna,

This is the third posting I have tried to send you, but somehow just when I get to the end, my fingers hit a wrong key and the whole thing deletes. I am keeping my fingers crossed this goes through.

How are you doing anyway? You must be more than half way done since you started treatment a couple days before my husband. I haven't been able to get on the discussion board for a long time.....not enough hours. I hope you are able to eat and if not are using the tube so you don't drop too much weight.

What kind of pain medication are you using and are you using the Magic Mouthwash? My husband sleeps a lot.....even more on the weekends when he doesn't have to go anywhere for appointments or radiation.

We did have a good time on our 4 day weekend last month. We took my daughter and a friend to the Jonas Brothers concert. My husband and I didn't go to the concert, but we did see relatives and took in a few sites. it was a nice get a way before the storm.

Between running my daughter around and all the doctor and radiation appointments, I don't spend much time on the computer. I will try and make it a daily routine when possible because I think it really helps to connect with other people in the same predicament.

Please let me know Glenna how you are doing. I have thinking about you and all the people I have been in contact with.

Take care and good luck.

Penny

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Penny,

I have been checking the boards lately looking for you to see how things were going and assumed you must be quite busy as I haven't seen anything from you in quite a while. I'm glad to see you back and that your husband seems to be doing pretty good.

I think I'm having all the opposite side effects than your husband. I don't have any mouth or throat sores yet, even though my rad dr says my throat is quite red. I have lost my appetite and everything tastes so horrible that I have had to start using my feeding tube. I still drink water and can swallow fine it's just the taste is so bad that I can't stand to eat anything plus the nausea has been terrible. The dr switched me to Compazine for the nausea and it seems to work better but am still having the occasional bout of nausea. I was sleeping a lot also for the first month but now it seems I can't sleep at all, I'm going to ask the dr today if it could be from the switch in nausea med as that is the only thing I can think of that has changed in my routine lately. I still think I am doing fairly good though considering the side effects, they certainly aren't pleasant but I know they could be worse.

I know what you mean about all of the appointments! I also look forward to the weekends so I don't have to go anywhere :) I've had 22 rad treatments with just 13 to go and I have my last 2 chemo sessions next week - HOORAY!! These treatments are for the larynx cancer, I'm not sure if they are going to start the radiation immediately for the lung cancer or if I will get a small break in between. I'm also not sure on the chemo as my onco dr said he may do more chemo for the lung after I'm done with this series.

I am so happy to hear that you had such a good time on your vacation last month and were able to have some calm time with your husband before the storm. Please make sure you are taking care of yourself as I know this has all got to be exhausting for you also, you just don't get to sleep as much as your husband :)

I usually check the boards every morning while I am doing my "breakfast" feeding but don't always have the enery to respond to many of the postings, I just read them all.

As I said, I'm glad to see you back and hope to have a chance to chat with you again and see how you and your husband are doing. We can count down the number of treatments together :)

Take care and stay strong,

Glenna

pennynl4
Posts: 49
Joined: Jun 2009

Hi Glenna,

We are into August, somewhere I thought we would never get to. I hope your week went well.

Sorry about your nausea. Is there something else they can give you to offset the nausea? Have they ever given you Zofran? It's another anti-nausea pill.Thank goodness you have your feeding tube. It's good you are still being able to swallow.

My husband will be done with treatments on August 18. He is having real difficulty swallowing. So far he hasn't lost a ton of weight, although I am not sure why because of how little he eats. I wish he would drink more Ensure, but only drinks one or two a day. He does eat ice cream every day, but that causes mucous too. Since he has had a sinus infection, the Ensure and Boosts give him more mucous. He is done with the antibiotics for the sinus infection, but still has quite a bit of mucous. I don't know how much of this mucous is from the sinus infection or the radiation treatments.

All in all, I think he is doing good. (His opinion will be different since he is going through all this.)

He had to quit taking his Amifostine shots for the salivary glands. Thursday was his last shot and Friday he had a rash all up and down his back and had a low grade fever. Yesterday he was sick and had a fever and I was afraid he wouldn't be able to eat or drink any Ensure. But after some Zorfan and Tylenol, he was able to keep some Ensure down.

We are all counting down and crossing the days off the calendar. We are all getting closer to the end of treatment.

We will all get through this with the help from each other.

Take care and God Bless you and each and everyone one on this site.
Penny

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Penny,

It's great to hear from you again, I just wish your husband was feeling better. So far I have been lucky and have not got any infections or colds (knock on wood). My nausea is much better now but I am always so tired. Did 2 loads of laundry today and vaccumed the rugs and now I need a nap :)

I am so excited, 8 more radiation treatments to go, I finish mine on August 12th. I only have 2 more chemo and was scheduled to have those on the 4th and 5th but now I may have to postpone them. I went for my weekly blood work and the platelet count came back low so I have to wait until Tuesday to see if I can have them or not. I really hate to have them postponed but know it will be necessary if my counts aren't high enough. I am receiving cisplatin, which my oncologist calls "the big guns", he said he is going to lower my dosage by 5% to see if this will help me tolerate it better.

I haven't had a problem with mucous but my throat is starting to get quite sore, I'm still able to swallow but only drink water and Ensure as everything else tastes so horrible that I can't stand the taste of food. Boy do I miss real food :( Hopefully my taste buds will come back when all of this is done as I keep thinking of all the things I want to eat.

Please tell your husband to drink, drink, drink! I still manage 1 or 2 Ensure each day plus water plus 5 cans of the nutritional supplements through my feeding tube. You're right, it's a good thing I got the tube put in, was hoping to not need it but it's been a life saver.

Please give your husband my best and tell him to stay strong, WE WIll get through this together. I finish my treatments before him but will be counting down his days also.

Take care of yourself also, you are both in my thoughts and prayers.

Glenna

pennynl4
Posts: 49
Joined: Jun 2009

Thanks again for the encouragement! Keep up the good work.

TOGETHER WE CAN!!! TOGETHER WE WILL!!!

I will check in on you later.

Take care,
Penny

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Penny,

Just wanted to say hi and see how you and your husband are doing. Is he able to eat or drink any better now or does he still have a lot of pain. I'm not sure why but I have still had no real pain (believe me I'm not complaining) just mild discomfort in my throat. The dry mouth is still bad and an occasional bout of nausea. I know they say that not everyone will have all the side effects and it does not mean the treatment isn't working if you don't get them, but still I worry sometimes.

My platelet count went back up in time so I was able to get my last 2 chemo sessions last week - HOORAY! Now I just have 3 more rads to go, I will finish on the 12th! I believe you said your husband will finish on the 18th - I'm sure he is as anxious to get through this as I am.

The doctors are going to do a CT scan of my lung in about 3 weeks and then they will decide on what type of chemo they are going to do and how many rad treatments I will be getting. So I'm technically not done yet but at least I will get a break for a while. The 80 mile round trip for the rads was really getting tiring. I will finally be able to stay home for a while and enjoy my family and the beautiful weather we have been having.

Please post an update on how your husband is doing when you have a chance and tell him I will be counting down his days also.

TOGETHER WE CAN!!! TOGETHER WE WILL!!!

Take good care of yourself,
Glenna

pennynl4
Posts: 49
Joined: Jun 2009

Hi Glenna,

Glad to hear you are doing so well. Glad you were able to have your last chemo sessions last week. I am so happy for you! The 80 miles you drive must be so exhausting....we just have a 20 mile round trip....I couldn't imagine driving that far everyday. And thank goodness it's in good weather too.

So are you able to eat normal soft food? It will be so nice for you to have a break in treatment so you can spend more time with your family. So sorry that you have to have further treatment. Please let me know when you hear about when that all starts.

My husband is just able to drink Ensure, Boost and Instant Breakfast for his meals. He was eating a lot of ice cream, but now that bothers him. And of course I am trying to get as much water down him as much as possible. He was taking morphine for pain and now he has had a fentanyl patch and takes morphine sometimes in between. They might change him to a higher dose of the patch. It has helped some, but not enough so he can eat anything.

He has had to stop the Amifostine shots for his saliva glands about a week ago. He was getting a reaction, but he did have 22 shots so I am sure that has helped the glands.

Today he wasn't able to get as much Boost or Ensure down as he was very sick to his stomach. After a couple of Zofran he was able to drink his Boost/Ensure, but didn't get enough of them down today/tonight.

All in all, I think he is doing good and he is almost done!!!!!!

I will tell him you are counting down the days for him too.

It was good hearing from you and post when you can.

TOGETHER WE CAN!!!!!!!TOGETHER WE WILL!!!!!!!

Talk to you later and God Bless,
Penny

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

How are you both doing?
I am just starting on this path and your info is so helpful.
Please write
stacey

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

Dear Glenna
How did things go, I did not see any more posts?
I am just starting on this path and your info is so helpful.
Please write
stacey

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Stacey, I feel bad welcoming you to this club but please know that you are among friends who will help you through every step of your treatments. I can't help but feel sad each time I see a new name because I know from experience how frightened and confused new members are. LOL - I was a basketcase when I first joined but it didn't take long for the more experienced members to calm my fears.

I went through a bad spell recently of anxiety and depression while waiting for my first scan and didn't post for quite some time. That was pretty stupid on my part as I know if I had posted how I was feeling there would be many responses to help me calm my fears.

I had my first scan and another biopsy on my larynx and am now in remission - WOO HOO!!!
The doctors told me from the start that they could not cure me but they were very optimistic that I would have a lengthy remission. My doctors are fantastic and I have great faith in them.

I have started posting again on both the head and neck forum and the lung cancer forum as I have NSCLC adenocarcinoma and Squamous Cell carcinoma in my left lung. My friends say I have a tendency to go overboard in everything I do but this is one area that I wish I hadn't :-) Oh well, I guess it's all part of life and this is the one I have been dealt so I will just try to deal with everything as best as I can.

If you have any questions or concerns please don't hesitate to post them and I will help you in any way I can. It is a great feeling to help others as I have been helped tremendously on this site and would like to do the same for others.

You can either post again on this forum or you can e-mail me here on CSN if you prefer. I will add you to my friends list.

I do want to tell you to relax (Iknow it may seem impossible now but you will) and not let yourself get stressed out - stress is definitely not good for you.

I look forward to hearing from you.

Stay strong and keep smiling (I love your picture)
Glenna

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

Thanks for your warm wishes..just seeing others come through one side and out the other is reassuring..I am on IMRT/Amifostine day 7 of 35. Water has just started tasting funny and my face is red, I am not sure if it is Decadron or rad tx. Will ask MD on Monday....
I am making a point to enjoy my appetite while it is still here and things still taste good. (except for water, which I am trying to force down)
Please do keep in touch!!
Stacey

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

You are very wise to enjoy food now :-) I'm not trying to discourage you but most people find that food tastes terrible and you may lose your appetite, this happened to me around week 5 of radiation, so enjoy and pig out. Gaining weight would be an excellent idea now, whoever thought you would hear a woman say that - LOL!!

You didn't mention what type of cancer you are being treated for, are you undergoing chemo also, if so, what drug? I'm assuming you are receiving chemo because you mention decadron. I was never offered the Amifostine, I wish they had as my salivary glands are fried and the doctors don't hold much hope for any improvement. It's all just part of this horrible disease and I have learned to deal with it so I'm not going to complain - I'm still alive and that's what counts!!

Please check with your doctor tomorrow and see if there is anything else you can drink that will help you keep hydrated if the taste of water becomes unbearable. I have read on other posts that some of the sports drinks are not good for you while you are undergoing treatments so it may be wise to check with your doctor or nutritionist before trying anything new. Hydration is an absolute must during treatment, I'm 4 months post treatment and still drinking 8 to 10 glasses of water daily and 2 or 3 Ensure Plus as I am trying to gain back some of the weight I lost.

Enough unsolicited advice for now :-) Please stay in touch and let us know how you are doing or if you have any questions. I will watch for your posts.

Stay strong and keep smiling,
Glenna

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

i just want to interject that i too have learned the hard way with losing posts, where i have poured out my heart and lost it all.
whenever i post a rather lengthy post, before i hit post, i highlite the whole thing, and hit copy.
then if i lost it, i can try and repost by pasting it back.

hope this helps everyone!

Kathy

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