Hi, all -

It's been a while since I posted, so I thought I'd give you a halftime report. I started rads and chemo (taxol and carboplatin) on July 13 and am three weeks (out of six) done now! My mouth is full of blisters, especially inside my top lip (ouch!)and I can't breathe through my nose anymore. I'm still eating (soup) and drinking, but don't know how long that's gonna last. Starting to lose some hair, too. Some insomnia (due to pain?) and very low energy. I'm getting a somewhat preemptive short short haircut next week to lessen the shock of the hair loss. All in all, I guess I'm hanging in there all right; my fears are around how much worse it might get, but I guess I can't know that. Any other women out there who had Taxol and lost hair? Just wondering.

Hi Mighty Mouse,

Thanks for the 1/2 time report. Were you prescribed any painmeds? That might be helpful for your eating and sleeping.

I don't know of anyone who has had carbo and taxol here...I hope someone is able to chime in with that experience.

The carboplatin generally doesn't cause hair loss, although I am pretty sure Taxol does. I wish I could send you a picture of a friend of mine who is fighting breast cancer, she lost all of her hair and opted for the bald and beautiful look. I saw her a few weeks ago and she looked stunning!

The RT can get progressively harder to deal with regarding side effects. Be pro-active about your need for pain meds and very open about any discomfort with your medical team.

My husband always wanted to get in and out of the hospital so his standard answer to how are you feeling was "fine". I would review his side effects and list of discomforts with his team when he was in treatment and was able to make sure he had all of the proper pain meds and tools to feel as comfortable as possible. I hope you are a better self advocate than my husband. ;-)

Your 1/2 way through and still eating...you are doing great! There are many here who have had much better experiences recently throughout treatment than my husband...I hope you continue to be one of them.

Thanks for well wishes, Margaret. I do have pain meds but am probably not using them as much as I should. I'm going to ask for Magic Mouthwash today to see if it helps, too.

I've pretty much stopped eating over the weekend; now it's mostly Boost and Greek yogurt and protein shakes. Everything stings, even water, sometimes.

I'm giving up on the hair; it's definitely going fast.

Hi Chris,

Good idea on the magic mouthwash front. That can help numb the mouth to get some calories down. Sorry to hear that everything stings.

Do you have someone to drive you to treatments? You might be at a point where you may need to increase the frequency/dosage of the regular pain medication so that you can be more comfortable.

I tried to find a post I saw this weekend, I thought I read that there were several people here who used taxol w/ their chemo. Not all lost their hair. Is your hair coming out all over, or in spots? Dan lost hair in two spots from the radiation.

Hi Chris - I can't comment on any chemo effects as I was thankfully spared that treatment - although I did lose half the hair on the back of my head thanks to the rads.

During RT and for several weeks afterward I found viscous lidocaine to be the only thing that would numb my mouth sores enough to allow me to gag anything down. I.e. Boost, Ensure, etc, which, amazingly now - 2 months after the end of RT - are still practically the only thing I eat.

I've heard the term Magic Mouthwash before... wondering if posters mean OraMagic? Anyway that's also helpful but not nearly as strong as the lidocaine.

Don't stint on the pain medication! At the height of my treatment I was taking 3 Percocets every 4 hours practically around the clock.

All of Margaret's suggestions are good ones too. I was able to drive myself to treatments daily (35 mins each way, in LA traffic) until the last couple of days... but that was because I was on a Fentanyl patch for pain and didn't trust myself to drive. You might also ask your doc about Fentanyl if he/she hasn't mentioned it.

Courage and optimism: sounds as if you have both in abundance, and that's why you're going to be fine!
David

Thanks, David and Margaret. I went in today for my radiation treatment, but the RO looked at my mouth first and told me I needed to take three days off. I guess it's as bad as I thought! The underside of my upper lip is one solid blister -- I can't smile anymore, have a hard time drinking (and needless to say, eating). The RO prescribed lidocaine for me (viscous), and I'm going to use it! I tried it before lunch, and was able to eat much more comfortably.

I am still driving myself to treatments (except on chemo days, when I get a ride); if I get to the point where I can't, my fiance will figure out a way to get out of work to do it.

So, three days' respite -- I haven't heard anyone ever talk about their RO giving them time off, but I guess I have to trust mine. I also get the week off from chemo. Maybe my side effects will calm down a little now, and then I can return to the regular routine.

Thanks for all your advice -- I really appreciate it!

No Davud we mean magic mouth wash. I What my Dr prescribes is his own formula with 3 narcotics in it. It will numb you for awhile. I am supposed to take it before I eat and the at bedtime. But at bedtime I take a xanax and 1/2 a perc. This relaxes me enough along with 4 other pills that I can sleep. They all cause drowsyness.

Another David....way to many David's have this cancer IMHO

Check this out

www.oralcancerfoundation.org/treatment/mucositis.html

You can always go to the bottom of this web site's page and click on SEARCH and find anything you want related to our cancer right on this site.

Chris,

My husband is finished with th 33 radiations and 3 chemos with three more chemos to go. He had a small sore on his tongue that has now turned into many sores. Everyone is different but I'd say the last 2 weeks of radiation and the first week after radiation has ended has been the hardest for him. I would say the sores got progressively worse. If not for his mouth sores he would be in much better shape. He says his mouth sores are a 10 without meds and a 5 with. It has really kicked his butt. We struggled with pain meds and realized how important it is to control the pain level. He is now on a slow morphine release tab 2 times a day and morphine tincture low does every three hours as needed. It took awhile to get the pain meds right. He puts Colgate Orabase ( we tried others but Colgate seems the best) directly on the sores and he gargles with magic mouth wash to numb the mouth. We did elect to get the PEG half way through and our happy with having it now. He can hydrate all night and get nutrition down when it is too painful to swallow. He couldn't afford to lose lots and lots of pounds as he was skinny to start with. He lost 25 lbs with the tonsillectomy before the treatment even started. He has lost a total of 25 lbs, so 10 lbs from the actual treatment. He would have wasted away without the PEG and would have had to go to the hospital a lot to rehydrate. The PEG is a personal choice. For us, a life saver.I go to all his appointments and am really an advocate with all the meds and getting what he needs. He would probably not be so pro-active if he went alone. Also he forgets to take his meds if I don't monitor them. He is also taking Diflucan every day for thrush.

Once we increased his meds he couldn't drive to treatment anymore. It would be a good idea to line up people to help drive you.

Now is a good time to re-evaluate your meds. He is on cispaltin, no hair loss except two spots from the radiation but lots of nausea after chemo for a week.
Ativan under the tongue at bed time has helped him relax and also helps with nausea if you have that as a side effect. I didn't read that you did. Hang in there. We are thinking of you.
He just finished radiation last Tuesday so what you are going through is really really familiar and seems like yesterday ( it kind of was yesterday!)

Vanessa

Thanks, Vanessa. You husband's pain sounds a lot like mine -- the sores are horribly painful and make it hard to even drink creamed soup or anything. I am keeping the PEG in the back of my mind as a possibility if the time comes when I can't even do Carnation VHC. I have Percoset for pain, works moderately well, but I probably need to go for the full dose instead of "soldiering on" through the pain as I tend to do. If I do up my pain meds, I will definitely need to have rides to treatment, since the meds make me woozy. My fiance is ready to drive, and the American Cancer Society also has free rides when I need them. I also was given Lidocaine yesterday, and that works well for about half an hour; I'm going to ask again about Magic Mouthwash the next time I go in, too.

I'm glad your husband is DONE -- how terrific he must feel about that! I hope his next few weeks go well; they will probably be hard, but it sounds like he's got great support from you and all the right meds in place.

Chris,
Lidocaine also worked for numbing but made him sick after chemo. It would be good to have the option of taking either the magic mouth wash or Lidocaine Both seemed to work for him. No need to soldier on through the pain...it just makes you weaker and slower to heal.

I'm glad to hear you have availability of rides. You will feel better knowing you don't have to function fully to have to drive your self. Plus you might not even realize your not functioning at full capacity.

I have periodically gone on this forum throughout Jeff's treatment. Margaret has been great as a support. Her husband had the same diagnosis excately 2 years ago almost to the date. Pretty much what people told me to expect, as far as a time line has been true. The side effects of treatment , with a few exceptions have been in line with what her husband experienced. It was most helpful for us to have heads up on what we might expect. I'm glad you are reaching out on this site.

Take care
Vanessa

Vanessa

Chris,

I have been thinking of you today as you should be close to finishing your treatments and your OC diagnosis was similar to my daughters. We are 3 months out of treatment and feel we have turned the corner, but worried about you. I don't know why but I'm praying for you.

God bless,
Bonnie

Hi,
just wondering how you were doing?
I know Martin had sores and ulcers and thrush (which cleared with medication). He ended up with a feeding tube for the last 2 weeks of treatment and kept it for a further 3 weeks.
He stuck to scandishakes after that then slowly got to creme caramel and custard and sweet wet things. He only had TX though.
I hope you are doing ok. It does get better all be it slowly.
Cecilia

Hi, all -

Thanks for checking up on me! I finished treatment on 8/26! Unfortunately, things have gone downhill since then -- I have had a LOT more pain than I thought I would and my energy has dipped to a new low. I do wonder if this is "normal"...Also, I have a yeast infection -- just started meds yesterday for that and am hoping that soon the pain will be better. For the first time since starting treatment, I have gone without "eating" (drinking protein drinks) -- have forced myself to take water, but that's all I can do. Now I know why people get a feeding tube! Of course, it's not an option for me at this point, but I'm looking forward to getting this pain under control enough that I can eat (drink Ensure, etc.) again.

I know I'm not supposed to feel better right away, but am I supposed to feel WORSE? I do better when I have a light at the end of the tunnel to keep my eye on, but right now I'm really in the dark...

Also, has anyone else out there had -- yuck -- mucous that tastes like dead animal? It's unbearable, and I hate to think what my breath smells like.

Chris, it is awesome to finish tx but the few weeks following are no cake walk and frustrating as you think you should feel a heck of a lot better than you do. You are now topped out with radiation so the mucous, awful throat, and other such wonderful side effects are par for the course. It just takes time for the body to recover and tougher ( I think ) in your case since you do not have the PEG to pour down nutrients, etc. Every day though is a healing day - good luck!

Chris,

Not sure if this will help but I'm one week out of treatment and hit my all time low. The mucuous is definately the worst part. I have found MAJOR relief with morphine patches. They are costly (my cost was $111) but it stays on for 3 days and that cost was a 5 pack, so 15 days of relief. It doesn't cure the mucuous or the inability to eat but it sure does put you in a better mood. I feel almost like myself again as I'm getting through this...good luck!

Chris,
I don't care how you do it, but have got to get the Ensure Plus or better yet Carnation VHC down and you need to get at least 4 down a day. Your body needs all the nutrition it can get so it can heal. Get some pain meds if that is what you need. Try the seltzer water for the mucous.

Yes the radiation keeps on working for several weeks after the treatment is over and yes you do feel worse for the first couple of weeks, but then it starts to slowly get better. Your job at this point is to stay hydrated and get as many proteins and calories in you as possible. No wonder you are tired if all you are doing is drinking water. I too went through this without a peg so I know what you are facing. If you are using Ensure, I hope you are using Ensure Plus. Its is 350 calories and 13gm of protein but VHC is 550. The idea is to get the most calories per sip. Good luck. You CAN do this.

Take care,
Eileen

Chris,

hang in there. My husband is just coming out of the 2-3 week post radiation and it was a very rough road. I think it was the hardest part of the treatment...but it will get better. As soon as the radiation starts to wear off you will start healing. He took a lot of morphine to get through it. He is now not on any pain meds and his mouth is finally healing. Take whatever pain meds you need and keep hydrated. There is a light at the end of the tunnel. Sending lots of prayers and hugs.

Vanessa

Chris:
Congratultins on finishing treatment. Unfortunately, the 2-3 weeks after treatment ends are usually the worse.

As Eileen said, you definitely need to take in nutrition during this time. Do you have Magic Mouthwash. It really helps. Also the Fentenyl patches do also.

Hang in there. Things will start getting better.

Sandyst

Thanks, everybody. I am going back to the RO today to see if there's more we can do about the pain; he gave me Dilaudid, but it just isn't doing the trick. I wish I could accept that these will be the hardest weeks...I was so ready to be DONE! My biggest disappointment is not to be at school teaching my new students when that's all I want to do -- join the "real" world again.

I'm glad I have all of you to keep me on track...this is such a great community!

Hi Chris

My partner Steve finished his treatment 2 days after you and we are both more than ready mentally to take on life again. Unfortunately physically it's not going to happen. From what I can see the mucus is a major issue. Steve just seems to cough it up from no where and today there was blood in it. But his throat is pretty raw at the moment from the treatment that it's no wonder. Hang in there Chris. We are following along just behind you in the recovery period. All of us will get through this difficult time.

Wendy