Hi Everyone! I hope everyone had a wonderful weekend.
I noticed,over the past weekend, that Charlies hands were shaking...did anyone else have that problem? Could it be because of the pain meds? He said that it is no big deal and I shouldn't worry, but of course-how can I not?
He also has really good days and then really bad ones- where all he wants to do is sleep (He only woke up yesterday to watch the Sopranos). He might go fishing today, but I dont want to push. Should I push? Did anyone else have these ups and downs? Thanks for any advice- I really am blessed with the site!
Hi Delia.
Leon's hand shook for a while too, during and after treatment. His family physician prescribed Buspar for him. He said this often happens with what he is going through and dealing with, I'm not quite sure if he meant from the treatment or from his nerves. He only took the medication for a short while, maybe a month after treatment. The shaking has gone completely away.
Leon also had good days and bad days. Still does at times, but the bad days are not as bad. He is working full time now and still has energy after working, many times after work he goes fishing for a couple of hours. When he first went back to work he would come home and go straight to bed after showering and eating.
I didn't push. My husband was never one to lay around before he got sick and I knew that if he could he would be up. So I let him recover at his own pace.
HI Delia,
My husbands hands are very shaky as well. Did he have Taxol? I have read thet the Taxol affects the nerves so I have attributed it to that and hope that once some time has passeed it be out of his system and will go away. His last chemo treatment was four weeks ago. When was your husband thru? what type of cancer does he have? My husband still has mostly bad days still as far as being up goes. He sleeps most days away... getting up for a few minutes here or there...
Thanks Kerry and Rhonda,
He didn't have Taxol, but he is taking Neuronton to help nerve damage.
Charlie had 35 weeks of radiation and 2 cycles of chemotherapy. He ended on April 7th. He had Stage IV larynx cancer. He is 30 years old. We go for the PET and CT scan result on JUne 2nd.
He was eating for a while and gained weight, but now he seems to be declining.
It seems like this fear will always be in my heart.
How is your husband feeling other than being sleepy?
We are actully planning on getting married on March 10th 2007.
Delia.
Congratulations...nothing like a wedding date to give you reason to recoup faster. Thats happy news and I hope you get even happier news on June 2nd. I'll be praying for you, be sure to let us know.
My husband actually had a really good night tonight so I guess he's following the pattern of good days and bad...just when I'm about to give up I see a glimmer of hope. His mucous is still really bad but maybe has improved if I look back about two weeks ago from now. The mucous has been the most troublesome thing for him..At least the pain meds manage the pain if we keep up on it. Hes on 75 mg fentanyl patch and oxy fast solution(oxycodone without the tylenol)every 4-6 hours. I don't know about you but my husband is not the same man I know since his diagnosis. They have put him on an antidepressant so hopefully trhat will kick in and help him thryu these next few months of recovery. Your husband is far too young to be having to deal with this disease...It's so unfair. Did they say what the cause was? My husband is 47 and I thought he was young.
Taxol is one of the chemotherapy drugs they used for Stephen. Which ones did they give your husband? Did they say what caused the nerve damage? I'll have to ask about the Neuronton for my husband...I haven't adressed the shaky hands with the M.O. yet.
THank you so much for the prayers! I will be doing the same- God knows how much we need them!
If we get the all clear on June 2nd- we are going strait to put down the deposit!!! (for some reason I cant bring myself to do it without the all clear-even though EVERYTHING is planned)
Charlie did become more emotional and had crying spells. I think that he was scared and for the first time realized how much love he had inside of him. Charlie always had a great spirit- it was trampled on during the treatment and he was moody- but he is doing better now. He was brave- I am so proud of him.
The mucous was a main problem for Charlie as well, but it DID GET BETTER!!! I used liquid Robituusin just for congestion- at the time it helped a little.
Is he in alot of pain? I would push for more fentanyl. Charlie is on 150 mg patch. He also took the oxyfast, but after 3 weeks we found that morphine worked much better for him. He also takes 3mg of lorazapram every 3-6 hours for anxiety. That sounds like alot but it helps with the scared feeling that must be constant. HE was also on alot of other meds (that were expermental) if you need any advice on them.
Charlie has cysplatin for his chemotherapy. The main thing was radiation.
Charlie just sleeps and sleeps- I get lonley which leads to fear. Do you feel that?
CHarlie has no other support becides me. Its so agravating when his own mother(adopted) didnt even offer to pick up milk or something for us. Im sorry I just needed to vent that out.
Charlies grandfather (and adopted father)died of throat cancer so part of it was genetic. The other part was his smoking and drinking. It is difficult for him to quit the smoking and I have caught him cheating a few times- but I think that is over.
What about your husband? He is so young too.
How are you handling everything?
Delia,
I'm sorry ya'll are having to go this alone. I think we may have gotten in the way TOO much with my brother. We were always there and always trying to do things for him that he wanted to do himself. I remember one time when he was in the hospital I grabbed a bottle of lotion and began to rub his feet (He always loved a footrub). You should have seen the look on his face! I knew immediately something was wrong. "He hates lotion," his wife said. I couldn't wipe it off fast enough. That taught me to ask before assuming what he wanted or needed. Do you think his Charlie's mother would help if you asked? Sometimes people don't know what to do.
David's hands shook following treatment as well, but it finally went away for a while. David also stayed in the house alot at first. I thought he might be depressed, but he just felt so terrible he couldn't do anything but sit in his chair. I would wait until you get the checkup on June 2 to start pushing him, then do so gently. I tried to push my brother, not realizing his cancer was getting worse. I feel terrible now. He didn't mind - he would try to go the mouth stretches and excercises, but he wouldn't practice trying to talk as much as I thought he should - I'm one of THOSE people who always think they know what is best. Anyway, what I didn't know was that his cancer had spread again, and he was physically unable to make sounds. So, the moral of my story is to be gentle with the pushing but encouraging. It's a fine line.
About the wedding - I've seen oral cancer take so much for so many, and it would be sad if it took away your wedding. If he doesn't feel like a big event, how about exchanging vows in the backyard or at a park? You wouldn't be out the big deposit and could easily rearrange it if he didn't feel well. I say, go for it, cancer or no cancer!I wish ya'll the best and will be thinking of you on June 2nd.
Tonya
Delia,
I can't imagine that you are having to do this all yourself...Charlie is blessed to have you. Sorry, but, SHAME on his mother.
I have two small children so I have alot of help from his and my family. And even then I've felt like I would fall apart. I had some bad days, basically if he did, but they are getting better each day. Stephens cancer is HPV positive, he's not a smoker.
Charlie should get help quitting when he's back on his feet... You don't want this beast to rear it's ugly head again and the odds are 50% higher if he continues to smoke. I used to smoke so I know its hard but what I've seen my husband go thru is a hell of alot HARDER. I'm sure you agree...this is something he has to do for himself.
Your husband is probably so sleepy from the ativan. Thats alot of ativan...1 mg puts my husband to sleep. Did the docs say to give him that much every 3 - 6 hours. He wouldn't be able to do anything but sleep taking all that ativan. Stephens doctor told us 1 Mg as needed but to try to limit it for bedtime. He used to take the 1 mgevery 6 hrs. during treatment for anxiety and it was enough to take the edge off. They said to try to cut back so he wouldn't be so sleepy all the time. Maybe ask your MO because you want him to start getting up a little more and you definately need the company. It is so lonely. I have my little ones but I still feel so alone at times.
I'm going to check with the the doc about upping his patch, I think your right that its maybe not enough.
Thanks - All my best Delia!
Kerry
Delia,
there is no evidence that head & neck cancer is genetic.
Gary- Really? His ENT said that it was genetic and we are not even sure if we should have children. Can you tell me how you got that information? I would love to look it up because I want children more that anything, but if I had to adopt because of Charlie than I would because I love him.
Kerry- Wow, I cant believe that Charlie was taking (is taking) 3mgs every 3 hours. Now it is every 5-6, but still! I am so happy to hear that Stephen is getting better! What are the doctors telling you? The only thing that worries me is him coming off all of this pain meds. There are 100 things that worry me -as you probally relate to. I can tell that it hurts him that his family isnt involved. He knows that it is not his fault, he is a wonderful person, it is their fault for missing out on such a happy life. It just makes me so angry! Thanks for listening! I wish you the best for a wonderous recovery and I pray for much better days for you and your family.
Delia,
Our MO told us right off that it is not a genetically linked cancer...I hate to say it but its the smoking that is the the most common cause for oral cancers. That is why I urge you to get Charlie some help. You guys don't want to have a reoccurrance after you've fought the battle of your life. I pray that Charlie finds the strength. It's a powerful addiction. I don't mean to preach, I just want you guys to have a long happy life together(with lots of babies!)
God Bless...Let us know on your scans. Just another week to wait, we have to wait till August for Stephens scans..it's like waiting for your fate to be decided - pure torture.
All my best, Kerry
I too would like like to know where he got that information, Brian has said it is not genetic and he is on top of this stuff.
Here's a link to what MSKCCC has to say about it and genetics is not mentioned
http://www.mskcc.org/mskcc/html/9984.cfm And MDACCC weighs in:
http://www2.mdanderson.org/depts/oncolog/articles/04/10-oct/10-04-1.html Here's some more info for you:
Genetic progression model for head and neck cancer: implications for field cancerization.
Califano J, van der Riet P, Westra W, Nawroz H, Clayman G, Piantadosi S, Corio R, Lee D, Greenberg B, Koch W, Sidransky D.
Department of Otolaryngology-Head and Neck Surgery, Johns Hopkins Hospital (this one's for you Gail), Baltimore, Maryland 21205-2195, USA.
A genetic progression model of head and neck squamous cell carcinoma has not yet been elucidated, and the genetic basis for "field cancerization" of the aerodigestive tract has also remained obscure. Eighty-seven lesions of the head and neck, including preinvasive lesions and benign lesions associated with carcinogen exposure, were tested using microsatellite analysis for allelic loss at 10 major chromosomal loci which have been defined previously. The spectrum of chromosomal loss progressively increased at each histopathological step from benign hyperplasia to dysplasia to carcinoma in situ to invasive cancer. Adjacent areas of tissue with different histopathological appearance shared common genetic changes, but the more histopathologically advanced areas exhibited additional genetic alterations. Abnormal mucosal cells surrounding preinvasive and microinvasive lesions shared common genetic alterations with those lesions and thus appear to arise from a single progenitor clone. Based on these findings, the local clinical phenomenon of field cancerization seems to involve the expansion and migration of clonally related preneoplastic cells.
If you can get through this article you will see that all cancer is related in some respects to genetics. For that matter so is all life. But when we talk of a genetic link to a particular cancer such as one that would transfer a specific disease from generation to generation oral cancer does not fit the bill. Genetic susceptibility to diseases, or to particular toxins (such as those found in tobacco) is something that we can explore through genetics. Some individuals have a genetic predisposition to certain protections or susceptibilities. But oral cancer is not, except in the most general terms as in all cancers, a genetically caused disease. It is lifestyle related in the largest sense, and viral related in a secondary sense.
http://www.oralcancerfoundation.org/facts/cancer_genetics.htm
According to one of our doctors (the senior author on that paper Gary cites) there are some oral cancers that are related to a (human) gene which suppresses the cellular repair mechanism. People with this genetic mutation are more suspectible to oral cancer, it is rather like the women who are pre-disposed to breast or ovarian cancer -- and is a small minority. Whether it is sufficent in and of itself to cause oral cancer, or just makes one more susceptible, I am not sure.
Most of the genetic changes leading to cancer arise from mutations at the cellular level which reduce the ability of the cell to repair itself, and are often preceded by inflammation. A Hopkins doctor studying prostate cancer, Bill Nelson, is elucidating the cascade of events starting with local infection and inflammation and leading to pre-cancerous changes (the "genetic progression model" the article refers to). Nelson has found that at some point in this progression the normal cell loses the ability to repair damage to its genetic material and also, its naturally programmed cell death.
The genetic changes found in oral canacer may come from exposure to carcinogens (e.g. smoking) or in many cases, viral infection. In the latter case the viral genome may be actually incorporated into that of the cell (although not always).
Gail
When Charlie was first diagnosed, we sat in the ENT waiting room and he said that Charlie probally would have developed it sooner or later, but becasue of his smoking it metastisized early- this he said was because it was genentic.
But truthfully- I DID NOT feel comfortable with this doctor. He was somewhat of a "hot shot", he called Charlie on his cell phone on a FRIDAY at 5pm to tell him that he has "really aggressive larnyx cancer" and he would give him an appointment the next tuesday at 10. I dont think either of us remember a moment of that weekend.
One question- I guess larynx cancer isnt oral cancer- it is head and neck. I really love this site- can i still post or is it not approprite because of the different cancers? They all require the some of the same treatment, PEG Tubes, pain meds, eating issues- I think that I can offer really good avice- I would still like to contribure and keep everyone posted. Im sorry.
Laryngeal cancer has the same risk factors and causes as oral cancers and is part of our family of diseases. More than 85% of all head and neck cancers are oral cancers. Thyroid cancer is an endocrine cancer caused differently and falls into different treatment protocols. You are welcome to be part of our family. We all have to stick together when it comes to this disease. Oral, head and neck, whatever you call it.... we are in the same boat for the most part.
Hi Delia,
There is nothing like a great project to looking for...especially a wedding. I am so happy for you and Charlie.
The emotional ups and downs are totally understandable and to a certain extend "healthy". I know it is not easy for the caregiver/soul mate/wife/husband simply because often we are now dealing with a "new" partner and as much as we want to help and support we seem not to have it right. It is a constant reajustment. Let your love lead you!!!
Regarding the f-up PET scan. I thought I would share this info with you as I just found it myself this week. I made a "field trip" to the school of medecine's library looking for info the PET scans and its efficacy etc.... I have found a journal article ( which I gave to our RT) in the Head and Neck Journal dated 2001 ( I know it is not the most updated one). It basically said that a PET scan should be done after RT and chemo in no less then 4 months. Again according to the article it seems that there is a high false positive rate within the first 1 to 3 month. My husband finished the Rt on 13th of April. We have discussed it with our RT and he will have it in September.
The last thing I want is to worry you but I thought it would be helpful to you as well as it is for us.
ciao Bella!
The trembling hands are very familiar. There are several chemo drugs that adversely effect the nerve endings in fingers, hands, toes, and feet - and more. This condition, called neuropathy is a general condition that identifies damage to nerves and nerve groups - inhibiting their ability both to function and to function smoothly together.
The trembling is nerves firing and stimulating muscles that are opposed to each other (loss of tone). My hands shook for nearly two years after treatment. The neurologists here believe there is little or nothing that can be done to restore tone but time. The nerve tissues, which grow very very slowly, will eventually regenerate and smooth function will be restored.
Consider finding a drug other than the Ativan for anxiety. Like all drugs of its type, it does develop both tolerance and some dependence. Anti-depressants can accomplish this anti-anxiety function and are NOT accompanied by the constant fatigue and sleeping. They also help with evening out the highs and lows. Good luck. Be strong, Tom
Hi Delia,
The dose of Ativan he's taking is really high and that may not be helping the situation. Many people experience stress anxiety which is better treated with a longer acting drug like zoloft. There are less side effects as Tom said and it's good for both anxiety and depression. Best of luck with the scan on the 2nd, I hope Charlie is feeling better soon.
Regards JoAnne
Thank you to everyone.
It is a really high dose- the RO prescribed it and he has been taking it for the past 4 months. 3mgs every 3hours. And how it is 3mgs every 5-6 hours because he was having withdraw symptoms. The medical oncologist didnt believe me when I told him the dosage and the time, he has to confirm with the RO and then came back and said "Charlie-how can you speak right now?"
There is so much to worry about- the results, coming off the many many many addictive meds, the new lifestyle, my very low paying job, if we can have children. Phew- I just needed to vent that out- thanks for everyone who listened!
Brian- Thank you for making me feel welcome and teaching me new things.
We are going to try welbutrin- it is good for the smoking sensation and depression.
Right now Charlie is getting his PET and CT scan done. Thank you for the good lucks and prayers.
But a wedding is fun- I cant wait to get the that church!