New to this site - husband has stage 4a
Thanks,
Donna in Ohio
Comments
-
Hi Donna,
I am the caregiver here as well, as you can tell from my screenname. Sounds like your husband's treatment is exactly what we are FIVE DAYS from completing. Woo Hoo! There are differing opinions on this site about the PEG but I will tell you that my husband's doctor insisted upon it(much to my husband's disappointment) and it is now a lifesaver. He has been using it for two weeks now and today is actually the first day he has not eaten anything by mouth. So...even though he has been able to eat all of this time - and doing so without being able to taste - at this point it just isn't enough to sustain and help his body heal. Good luck on the road ahead, take care and definitely keep us up to date on this site. It has been MY lifesaver...0 -
Hi Donna
I didn't like the idea of getting a PEG, either. Doc and nutritionist said it was a must. Very glad I had it put in before I needed it. Is hubby not interested in visiting this site? Perhaps you can tell him stories about folks here. I was diagnosed stage four, too (base of tongue) with two lymph nodes involved - one very big - I got clean scans in April. There are lots of folks here who made it though treatment, and are now doing well - hoping your hubby becomes one.0 -
WelcomePam M said:Hi Donna
I didn't like the idea of getting a PEG, either. Doc and nutritionist said it was a must. Very glad I had it put in before I needed it. Is hubby not interested in visiting this site? Perhaps you can tell him stories about folks here. I was diagnosed stage four, too (base of tongue) with two lymph nodes involved - one very big - I got clean scans in April. There are lots of folks here who made it though treatment, and are now doing well - hoping your hubby becomes one.
Hi Donna in Ohio,
Welcome to this site. I too am a caregiver and found this site and these amazing people to the livesaver I needed as I supported Mark through his diagnosis, treatment, and recovery. He too was Stage IV SCC tonsil HPV+. He had a radical neck disection to start and then followed up with 30 rads, 1 cisplatin and 4 carboplatin/taxol chemo treatments.
I will tell you what I did whilte Mark went through this battle. When it came to him, I put all of my needs aside; and focused entirely on him. That does not mean I did not have feelings or needs at this time, I just felt very strongly that he needed to see me as strong and caring. He did not have to know how scared or sad I was. I brought that to these boards, or my friends, or family. I did not want him to think for a moment that he needed to take care of me. I also remained extremely optimistic and positive through the whole process. I embraced being able to care for him (usually he does not need that kind of care), and made our MOnday long chemo/rad days "date day". I would put on a cute dress, we'd go to the hospital, play scrabble while he got his chemo, get a bite to eat, go for rads, then he would be starving and we would go for sushi for dinner (for as long as he could eat like that). I was very involved with talking to the doctors, I organized his meds, ran to the pharmacy, left him alone when he needed to be alone. It was about him. That is all I can really say. He needed to fight. I could not fight for him, but I could take as much off his plate as possible so all his mental and physcial energy could go to fighting and finishing. He did both. He is 10 months post treatment with two clean PETs behind him.
We are amazingly stronger as a couple for the experience.
He had the PEG. Used it for 1 week...but it was a very important week at the end of treatment.
My best to you ane your husband as you travel forward. It is a slow journey, but it does have an end. One day at a time. Embrace every single one of them.
Kim0 -
Welcome
Donna:
Welcome to the family of CSN. I call them my csn "buds". I refer to myself as basketcase wife. My husband was diagnosed in Nov. 2008 with Stage 4 throat cancer. He underwent the same type treatment you mentioned. His chemo and radiation was not concurrent so he didn't get the peg tube till after he started rads. He was not a big person either; but he never used the peg tube; it was there if he needed it! It is a difficult journey but we had the tops in rad. oncologist and reg. oncologist. He did well thru and the treatment were successful; now he was uncomfortable part of the time but all in all he was a real trooper. Now, please don't let the next part scare you but I feel I wouldn't be being completely honest with you but unfortunately, Charlie's cancer returned about this time last year and didn't come back in his neck but the same type in different places and it doesn't usually travel so but Charlie passed away Aug. 21, 2010. But Donna, he was a survivor and he did return to work after 6 months off and everybody's different. We had great family, friend and church support and we were so connected so we had great support for each other. And you will find this website and the people here just beyond super. I don't know what I would have done without their encouragement, prayers, and kind words. And the thing is they understand like you wouldn't believe even if you post something that may not have anything to do with the cancer beast but something that's on your mind or bothering you and you just need a place to express your feelings. So please don't think anything is silly or not worth posting if it's important to you. I just wish I could meet these people in person to personally give them all a big hug. And obviously I still keep up with the site and see what's going on with all my "buds". This site is such a blessing and will be such a help and comfort to you. Prayers are coming your way and best of luck to you and hubby.
Jan (Basketwife)0 -
sounds like us
Your story sounds like my husband, Jim, and me. High school sweethearts, married for almost 35 years.
Jim's diagnosis rattled both of us and you have to recognize that you are impacted, too, very personally, not just in your need to take care of your husband.
Please make sure you visit the caregiver's section on this website. It is full of amazing people who will be there for you.
Make sure you take care of yourself. You can't take care of your husband through this long battle if you don't take care of yourself.
I believe in the PEG. There are threads here discussing this at length but as his doctor has advised he needs one, there should be no question in your mind or your husband's. You've got to trust this doctor or now is when you find another.
Although the treatment will bring changes to your lives and your schedules, you've got to remember you are still who you are, still need to do the things together you've always done (albeit, sometimes in a modified form - long shopping trips might be something he can handle this week and not next) and be gentle with yourselves.
These people on this site can answer your technical questions, your emotional questions, your anything questions...they are a terrific resource when it is the middle of the night and you can't sleep because of all that is going through your head.
Hugs, Donna.0 -
Hi Donna in Ohio.....
First welcome to the forum....I had a very similar Dx only stage III, check out my BIO for more details.
Right tonsil, same side tumor (swollen lymphnode), STG III, SCC HPV+.
First the tonsils came out, port installed..... On the PEG, I'm not opposed to one, especially if the doctors order it.. I just don't think that it should be mandatory for any and all circumstances, some people yes, it should be prescribed.
In your husbands case, go with the doctors decision...
I also had nine weeks (three week cycles as you mentioned) of Cisplatin, Taxotere and 5FU (5FU in a pump worn for several days each cycle).
After that I had seven weeks of weekly Carboplatin, and 35 daily rads....
That was two years ago, all scans have been clean and clear and all...knock on wood is going well.
I lost both taste and saliva for nearly 4 months, but 90% is back...
He will endure a lot of possible and different scenarios and side effects as we are all different. But I can guarantee you, that most anything that he'll encounter, someone here has also and can contribute.
Please post and ask questions as they arise....
Best,
John0 -
Welcome... My husband justNoellesmom said:sounds like us
Your story sounds like my husband, Jim, and me. High school sweethearts, married for almost 35 years.
Jim's diagnosis rattled both of us and you have to recognize that you are impacted, too, very personally, not just in your need to take care of your husband.
Please make sure you visit the caregiver's section on this website. It is full of amazing people who will be there for you.
Make sure you take care of yourself. You can't take care of your husband through this long battle if you don't take care of yourself.
I believe in the PEG. There are threads here discussing this at length but as his doctor has advised he needs one, there should be no question in your mind or your husband's. You've got to trust this doctor or now is when you find another.
Although the treatment will bring changes to your lives and your schedules, you've got to remember you are still who you are, still need to do the things together you've always done (albeit, sometimes in a modified form - long shopping trips might be something he can handle this week and not next) and be gentle with yourselves.
These people on this site can answer your technical questions, your emotional questions, your anything questions...they are a terrific resource when it is the middle of the night and you can't sleep because of all that is going through your head.
Hugs, Donna.
Welcome... My husband just finished treatment for stage 4A BOT last week. I am his primary caregiver and all I can say is do your research and ask questions. I did this and it made the process a little easier to help care for my husband. My take on the peg - my husband did not get one and his body is suffering...If I could go back and start over, he would have the peg. It's really hard to see someone you love deteriorate right before your eyes.0 -
Welcome Donna
Sorry to read about your husbands cancer. That is never good news. Here's some though: he can survive this, treatment works and this board is full of people with more experience than you can imagine that are always willing to help.
If you trust your doc, do what he suggests. The PEG is a lifesaver to most of us here who have had radiation to the head and neck. I wouldn't recommend starting treatment without it as getting it put in during would not be fun.
You can expect the next year to be the most difficult one you've had to date. Not to scare you but to prepare you. Surround yourself with friends and loved ones. Pray constantly and ask others to do so. Arm yourself with current research based information. Make solid nutrition a huge priority for your husband and yourself. Exercise daily; it helps with everything. Use the pain meds and don't let pain get ahead of him. Ask as many questions as you want of us and your docs; there is never too many or any stupid ones. Believe that he will be cancer free. Never stop believing.
Oh, and if his clothes stop fitting him well; buy new ones. Sometimes looking good helps us feel better. Looking bad never does.
Welcome to the board Donna. We're here to help however we can.
Bob0 -
To Donna in Ohio
Hi, and best of luck for you and your husband. This stuff ain't easy, but you CAN do it.
I too was strongly against the PEG, and 6 months later still really am disturbed to have a flippin' HOLE in my belly! However, it has overall been a good thing, esp. for my wife. In addition to all the other trials, she has not had to also deal with worrying about me wasting away any more than I already had to. I "only" lost 30 lbs, and it was mostly due to chemo-induced vomiting...'nuff on that for now.
As for what to expect, you've probably read many others' posts (I am new, here, too) but most of all be prepared for the long haul. I was very naive, going into this. I heard all of the words and read all of the disclosures, sure. Yet somehow I imagined it would be just a couple of tough months...I keep having to remind myself even now (not quite 4 months post-treatment) that this is going to take time. Then I forget that (sometimes more than once a day) and get frustrated. So I have to remember again. And around we go.
But it WILL get better, even though you guys will have to go through the fire first. My thoughts and prayers will be with you.
Locke0 -
Easier to get it earlierone_day said:To Donna in Ohio
Hi, and best of luck for you and your husband. This stuff ain't easy, but you CAN do it.
I too was strongly against the PEG, and 6 months later still really am disturbed to have a flippin' HOLE in my belly! However, it has overall been a good thing, esp. for my wife. In addition to all the other trials, she has not had to also deal with worrying about me wasting away any more than I already had to. I "only" lost 30 lbs, and it was mostly due to chemo-induced vomiting...'nuff on that for now.
As for what to expect, you've probably read many others' posts (I am new, here, too) but most of all be prepared for the long haul. I was very naive, going into this. I heard all of the words and read all of the disclosures, sure. Yet somehow I imagined it would be just a couple of tough months...I keep having to remind myself even now (not quite 4 months post-treatment) that this is going to take time. Then I forget that (sometimes more than once a day) and get frustrated. So I have to remember again. And around we go.
But it WILL get better, even though you guys will have to go through the fire first. My thoughts and prayers will be with you.
Locke
D,
I had one installed in week 3 of treatment when i could not eat. It saved my life no doubt. it is not such a big deal an they take them out after. Getting it in early reduces risks and better while he is strong. If he doesn't have much excess weight, it may be a good idea to get one, even if he doesn't use it, but it can alway be usd to bolster his food intake as getting sufficient nutrition is critical to getting through this ordeal.
Scam0 -
Hi Donna
I did not use the PEG but I was 230lbs when I started and went down to 165lbs when I finish. The only reason I did not use the PEG was because it was not offered to me at the time of my treatment. Your husband can do it with out the PEG but it is the hard way.
Take cane
Hondo0 -
Donna- the PEGHondo said:Hi Donna
I did not use the PEG but I was 230lbs when I started and went down to 165lbs when I finish. The only reason I did not use the PEG was because it was not offered to me at the time of my treatment. Your husband can do it with out the PEG but it is the hard way.
Take cane
Hondo
I got mine, which was actually a G-tube, a couple weeks before treatment started, and have never had any regrets. There will be some pain/discomfort in the area where the tubing goes into the abdomen, but that should go away in a few days. Daily changing of the dressing, and washing with soap and water around the area during changes, is especially important, early-on. A "home healthcare" center took care of my Jevity supplies, and a gal there was the one who showed me the ropes, so to speak, in the use and care of my PEG. Any questions or concerns- all you have to do is ask, here.
One way to look at it, Donna, is that getting a PEG is getting a safety net put in place, or doing all you can to prepare. And that is a good thing. A few, like John, never really needed a PEG, but many of us have, and some experienced worse times than was necessary because they didn't have one. His getting a PEG will eliminate one potential complication in treatment, and I hope you both can rest a bit easier knowing this.
kcass0 -
QuestionsKent Cass said:Donna- the PEG
I got mine, which was actually a G-tube, a couple weeks before treatment started, and have never had any regrets. There will be some pain/discomfort in the area where the tubing goes into the abdomen, but that should go away in a few days. Daily changing of the dressing, and washing with soap and water around the area during changes, is especially important, early-on. A "home healthcare" center took care of my Jevity supplies, and a gal there was the one who showed me the ropes, so to speak, in the use and care of my PEG. Any questions or concerns- all you have to do is ask, here.
One way to look at it, Donna, is that getting a PEG is getting a safety net put in place, or doing all you can to prepare. And that is a good thing. A few, like John, never really needed a PEG, but many of us have, and some experienced worse times than was necessary because they didn't have one. His getting a PEG will eliminate one potential complication in treatment, and I hope you both can rest a bit easier knowing this.
kcass
Hi Donna,
Welcome to the site. There is a post here with a good list of questions to ask. I was the same, Right tonsil st 4 with mets to lymph nodes. I am 14 months out of treatment and doing great. The feeding tube was a must for me also. And it is really not all that bad. When they take it out it looks like a bullet wound. So he can brag about being shot.
All the best,
Steve0 -
Echostevenl said:Questions
Hi Donna,
Welcome to the site. There is a post here with a good list of questions to ask. I was the same, Right tonsil st 4 with mets to lymph nodes. I am 14 months out of treatment and doing great. The feeding tube was a must for me also. And it is really not all that bad. When they take it out it looks like a bullet wound. So he can brag about being shot.
All the best,
Steve
I echo most of what others have said. Please go find the list of ~30 questions for your doctor that is another thread. Even if you are already into the thing, this is a comprehensive resource for things you ought to ask/know.
You should, of course, read the much longer and deeper (and hotter) PEG discussions that have gone on here, including one at present. Most of us are coming to a consensus that you shouldn't get one without thinking about it, and that your doctors are your best resource. I think we are coming to agreement that some people, especially those who are sick or otherwise compromised (besides having cancer, that is!) absolutely should get it. Many, even most, would benefit from it. For those who are in really great condition or who just believe they can do without or whose doctors do not recommend it, there may be a viable option not to. Not getting it now does not remove the option to get it later.
In my own case, I did not get a tube and I made it. Yes, I got the nine weeks of rads and also chemo. I lost a lot of weight that was all muscle but my inability to take in nourishment wasn't because I couldn't get it down the throat (though this wasn't easy) but that for a couple of weeks I couldn't keep it down there for long. A tube would just have been a direct load into the stomach which I would have had to bring back the other way. Obviously, as you will see from the discussions, your mileage may vary.
However, beyond this specific matter, I can tell you that you have a long hard road ahead of you for at least 3-6 months and possibly longer. You will be changed. But this is an extremely survivable cancer and you should be confident of this. You have some really great friends on this list; depend on us. Doug
One other thing, Donna. Go on the Caregivers discussion. There are wonderful people there and you and your husband will benefit from this.0 -
0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.6K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 308 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 395 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.3K Kidney Cancer
- 671 Leukemia
- 791 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 235 Multiple Myeloma
- 7.1K Ovarian Cancer
- 56 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.4K Prostate Cancer
- 1.2K Rare and Other Cancers
- 534 Sarcoma
- 719 Skin Cancer
- 647 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.9K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards