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Roselvr - please start new thread about DH!

14 years ago

I don't know what's going on with the forum, I hope we don't get a "pesky" message if you do, but it's worth a shot.

I would email you, but I know there are a lot of others waiting for an update too, no sense in making you type it more than once.

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Comments (3)

theroselvr
14 years ago
I was going to start one this morning but haven't had time. I'll try to get one once we get home. He had chemo #2 yesterday which was a week after he was supposed to have it - due to his feeding tube having a bad infection as well as a bad fungal infection in his mouth.

His feeding tube feels pretty good today; think the IV antibiotics they gave him the last 24 hours may have knocked out the rest of the infection :)

I'm leaving to go get him; we have to go to radiation 1st.

Here is a link that might be useful: My hubby - need prayers.. - rose forum
2ajsmama
Original Author
14 years ago
Her last post on Rose forum Nov 6 - so you don't have to go to link and scroll down (hope you don't mind)

"It's been a rough few weeks. After the surgery & healing he was feeling better and probably could have gone to work for a week but couldn't due to the disability paperwork.

It was a lot of stressful waiting to see if he was going to do a clinical trial; a drug I wished he'd get but the computer ended up putting him in the group that didn't get the drug :( The drug has been used on other cancers with good results but it wasn't meant to be & I'm sure there was a reason. He originally did not want to do the trial but changed his mind at the last minute. I know that things happen for a reason & feel that his dad who passed after my dad probably had something to do with it.

We found out Friday about the trial; lady emailed me and told me they would set his chemo & radiation Monday when he went. I let him go alone Monday because me being there with him is making him feel like he's "sick". When he went Monday he found out he'd get admitted on Wednesday. Tuesday came, the gal I email told me that they were having insurance issues and we might not have a time until the next morning. At 8am she called and said to be there by 10:30.

He was admitted, given a room then told he'd also have radiation that day (which we didn't know). I ended up leaving right before they took him for radiation. Mass transit was on strike & if I didn't leave I'd be stuck in traffic all night since most people had to drive into the city. After radiation he had lots of pre-chemo meds through the IV; chemo at 8pm which took 2 hours. Of course he didn't sleep much that night due to all the liquids they gave him.

We timed his release so that I was pulling up when he walked out. We did this because he was feeling ok & I'm trying to give him a little space. The parking charge is also outrageous; why pay $10 to run in and get him?

So, he had to go back in today for radiation and a taste bud study; he was up to driving there so he drove in; I then went back home and picked him up a few hours later when he was done. He's exhausted & has been sleeping since we got home.

Thankfully we don't have to go back to Philly until Monday which his son will take him; my daughter has a Dr appointment I have to be there for. Tuesday will be a long day. In addition to radiation he has the oncologist.

The next chemo will be November 25, another over night stay with the last being December 16th. Thankfully he's only having 3 chemo treatments but there are large doses.

Please say a prayer for my neighbors mother in law. I found out a few weeks ago that she was diagnosed with Lung Cancer; and found out yesterday that they want to remove her lung. I feel helpless. She's not in NJ, I can't give her advice on where she should go."

Update us when you can!
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Yes...but...the search is now out again. GW updated us though about their ongoing efforts to get it fixed. This is the banner on the main page here under "What's News at GW. January 31: We are continuing to work on search engine issues. You may get incorrect results on all forums. We are also aware of broken links on some forums. We are continuing to make repairs and appreciate your patience. If you are having other issues, not related to search or broken links, please contact us. I know lots of folks collapse the message there, so they may not even be aware of the update today. Sue...rbb
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Jerseygirl, not sure if I got the email as I don't remember the link. I have the page open, will check it out. Fly; he was hoping to still go to Mexico (trip was canceled due to surgery 9/22) this spring to fish but that dream was kind of killed a few weeks ago by a phone call he got; which is why I think he's been so in the dumps. Mcmann; yeah we got snow; it's part of the reason why I haven't been online much after we got it. Been trying to clean up as much as I can so that it starts to melt. Whoever plows our street did a horrible job. I can't wait for the snow to melt & my roses to start growing. I so need spring to get here. We saw the Dr on the 9th; had to be the worst visit we've had yet due to the long wait plus the Rad oncologist having some kind of emergency with another patient. He was in and out of the room a few times. Didn't care for the new Fellow he had. The Dr said that nothing lit up; not even the radiation spots; he was amazed at how clean the scan was. After we left, I kicked myself because I forgot to ask one question I'd had written down which was why my hubby's Adam's apple was swollen. I set up a Valentines surprise with our old neighbors; they drove up from TN with their 4 kids. Hubby was very surprised to see them. This was another reason I haven't been online much; had to get my house presentable. With me/us still out 3-4 days a week with appointments that were put aside & with all the snow; stuff was all over. The visit was enough to get him out of his funk.. he's had a pretty good week. Monday he woke up with the swelling worst; it had moved to his jaw. I called the Dr; they scheduled an appointment for Thursday. Of course the Dr called back the next day while I was at my back appointment; hubby didn't ask any of the questions I had. Thursday we saw the radiation machine techs; it's been a while since we last saw them; so that lifted him up. The Dr explained that since the swelling was moving, it was a good sign there was nothing wrong. He wrote a script for massage therapy to get the fluid moving. He said with the neck dissection scar tissue & radiation that fluid that would normally pass through & get absorbed wasn't but it should get better. I let him drive home from Philly; so that I know if he decided to get in his pickup; I know he's physically ok to drive. He hasn't driven since late early November. I'm hoping we can get his physical therapy set up next week. He's still so tired but is trying not to nap during the day because he can't sleep at night. I just hope that he doesn't speak to anyone on the phone that will get him down again.
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Roselvr and her DH need our support!
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I'm not nuts about the oncologist we saw; so I've been busy trying to figure out if we are staying there or not. They gave us the clinical trial info, so I've been trying to look more into those to see who else is doing what. He's not sure he wants to do one. We saw the radiation oncologist yesterday and liked that team very much. They answered the questions the oncologist didn't. Some of the test results weren't back when we saw oncology; so yesterday's appointment was very helpful. Hubby found a family Dr, she's younger then us and very nice. She has no problem prescribing in an emergency and also gave him something to sleep which didn't work last night. She's hoping that taking the sleeping pill for a week will reset his sleep patterns. The radiation team wanted him to see his dentist to make sure his teeth are in good shape. My daughter had an appointment for the dentist today, so I switched it, gave that one to my hubby and rescheduled hers. They did a mold of his teeth for a fluoride tray and will have it back in a week. He's going to do 5 days a week of radiation for 6 to 7 weeks. They are doing both sides of the neck. It will start the last Monday of the month. The radiation Dr said that his chances are good. They can only give a 3 year survival; he said 80-85%. He wondered why our original appointment wasn't until 2 weeks later. I explained how it was set up after my hubby's PET scan and before we had the surgery date, he was glad I called to reschedule it sooner. We will go back to Philly next week, he will get fitted for a radiation mask; meet with oncology & clinical trial and let us know exactly what the plan is. There was a chance his chemo drug would change. Chalk his cancer up to HPV, the test was positive, which was in his favor; surprising enough.
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jerseygirl_1
14 years ago
Roselvr,

Not sure if you received my email a while back. SPOHNC is a support group for families dealing with oral, head, and neck cancers. For some reason their website is not working. Check with social services at the hospital for their phone number.

Also, since your are at the hospital frequently check to see if there is discount parking available.

You and your husband are my thoughts and prayers.

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