SJAS
-
Posts
574 -
Joined
-
Last visited
Content Type
Downloads
Store
Profiles
Forums
Gallery
Blogs
Events
Posts posted by SJAS
-
-
Kim,
This is a terrifying illness at times, but sometimes a good cry together seems to release some of the stress and makes it easier to face the next step. As the plaque at the cancer park says, "Remember that someone at every stage of this disease has survived."
Re: the meds and sleep. They seem to do many strange things with dreams and jerking movements too.
There are many ways to connect with a higher power. I have friends of many different faiths than my own and I have them all praying for Steve. I will say a prayer for your family also.
-
My husband is using MS Contin (morphine) for spinal pain. His onc. also said that we would do radiation if the bone pain became severe as it is very effective for that.
-
Oh Joni, I am so saddened to hear your news. My Alex is 16 and I know how hard all this is on him. I can't imagine how it would have been at 8....My deepest prayers are with you.
-
Don,
Good for you for being so supportive of your mom for this difficult tx. Steve finished his WBRT in Feb. and boy, we know what you mean about fatigue. Sounds like your mother's keeping her hair a lot longer than he did. Hopefully, that will give a bit more protection to the scalp. Steve threatened to go in sometime with his head wrapped in tinfoil, so on his last WBRT I gave him a stuffed Taz (Tasmanian Devil) with its head wrapped in foil! Give her lots of extra hugs because WBRT is pretty rough.
-
TBone,
Hoping the doctor can give you some real help SOON! Know that these times are so hard for you and your family. Saying a prayer for you all.
-
-
Prayers on the way. These chemo things can really be a bummer. Steve has had chemo postponed several times and sometimes I think the delays really were a good thing in the long run. Gave him a chance to get back on his feet a bit. Hang in there and remember that the brighter days are around the corner.
-
-
Ginny,
Earl obviously found a special angel when he met you. I'm also sending prayers to add to the chorus of love and support for you both.
-
Cat,
No wonder you are so worn out having to carry this battle on your own. But I'm with those who want you to go to see someone else. We have had all the "experts" totally disagreeing at times, but it gives us the feeling of control when WE make the decision and guide treatment. Get some other opinions, get some options, make your decision and, like we were told, don't look back. Sending prayers for strength.
-
Hi TBone,
Hey, you were there for some of the celebration! Hurray!
Sorry to hear about the pain level. Before Steve was dx'd w/cancer, he had severe face pain which the docs kept treating for sinus infection. No success and was getting worse. Steve is very much a traditionalist, regular MD.s all the way for him - but in desperation went to an acupuncturist. She was the real thing from a long line of Chinese doctors, trained in Chinese meds, written up in newspapers, etc. Anyway, within the first session he felt much better (I couldn't believe it), and the pain was completely resolved in four sessions. Someone told me that her own husband died from cancer (she doesn't claim to CURE things like cancer), and he did not have to use any pain meds. Steve just started back on MS Contin for bone pain, but we may try the acupuncture again. We have always "pooh-poohed" alternative medicine, but it seems that there certainly is a place for it.
Take care!
-
Ginny & Earl,
My heart too goes out to you both. My prayers are already being lifted up. I send you a hug, Ginny, and cry with you. Your Earl sounds like such a remarkable man.
-
Ginny,
An old friend of mine who is very deeply spiritual came to see us yesterday and told me to just keep putting it out there to our Higher Power. I will definitely be doing that for you both.
-
So sorry to hear that the talc procedure didn't work for Robert. Steve was in the hospital for 9 days with a chest tube on a vacuum device while the surgeon waited for the lung to be dry enough for the talc. Finally, although it was still a bit over the limit, he did the procedure and it has seemed to do the trick. The chest tube was not easy, particularly on insertion and removal, but the relief was so great (and he certainly did not want any more thoracentesis - 2x) that he is glad he did it. Steve was also on a morphine drip the whole time the tube was in so that lessened his discomfort. He hadn't been able to lie down for weeks because of the pleural effusion (over 6 liters of fluid totally collapsed the left lung and was pushing on his heart and right lung). After the pleuradesis, he was finally able to go to bed. Hope the doctor can find some way to make the procedure work for Robert.
-
Glad to hear your husband is not having side effects. My husband hasn't started Iressa, but may soon. At the Relay for Life we met a wonderful woman who was Stage IV NSCLC and chemo hadn't worked for her. Iressa hadn't been approved yet at the time, but she was able to get it under "compassionate use," and has been on it for 2 1/2 yrs with almost no side effects. She looks and feels terrific. You'd never guess that she had been very ill. Hope your husband will have the same results!
-
Hello TBone & family,
Just want to introduce myself and pass on best wishes for your birthday. I just joined the board, but have popped in over the last few months since my husband's dx. TBone, I picked up on your story quickly and I always check to see if there is anything from you because your story reminds me so much of my husband's. He had brain mets from the original dx, so I was very anxious to see how yours were handled (Steve's brain mets treatment was delayed because his systemic disease demanded immediate attention, so your WBRT was before his). Anyway... hope you have a spectacular b-day and enjoy the best present anyone could ever hope for, which you already have - that incredibly wonderful family of yours! I think that your part of the country tends to get more rain than we do, so I'll try to send some California sunshine for your big bash. Of course with the kind of luck we seem to be having, it'll probably be our fog that shows up!
HAPPY 50TH!!
Smiles,
Joyce
-
Count us in on the misdiagnosis fiasco. In Steve's case they didn't even bother to do an x-ray - this after he passed out and fell to the floor from not being able to breathe. To worsen the situation, several weeks later when I tried to contact them to tell him his real diagnosis, no one would get back to me. This was after I repeatedly told them I wasn't interested in suing them, just wanted them to never do this to someone else. Got too busy in the cancer fight and dropped it several months, but eventually wrote a letter to the president of the hospital foundation. Received a call from the head E.R. doc the next day. Hopefully, they have now cleaned up their act and it really helped to release some of my anger. But also feel free to share your anger and frustration here. Just look at the opportunity you gave several of us to get out a bit more of ours in the process.
-
Just want to thank you all for the warm welcome. It already feels like a caring, safe place to come. We sure do appreciate your hospitality!
Steve & Joyce
-
When Steve was dx'd Stage IV, surgery was not an option because of the multiple mets (brain, bone, liver), but after his original chest/hip radiation and Carbo/Taxol chemo, his next scans came back totally clear. Unfortunately, the good news was pretty short-lived and he was back in tx. You might want to read my post re: WBRT as there's a good chance your friend will be facing that decision. I wish her all the best. Tell her I met a Stage IV survivor at Relay for Life this weekend who couldn't tolerate chemo, but has been doing terrific on Iressa for 2 1/2 years. She sure made our day since it's what we're looking at next.
-
Steve was first scheduled for WBRT in 12/03, but we opted to pursue Gamma Knife. That was cancelled when his tumors disappeared after chemo
and the onc. tried to convince us to do WBRT for possible cells. We refused (the neurosurgeon agreed with us), but I guess the onc. "won" the argument about a month later when Steve was dx'd with 15 lesions 
and thus began WBRT in 2/04. WBRT was extremely rough and Steve almost couldn't make it through it. The skin on his head was badly burned and his ears so swollen inside and out he had difficulty hearing. Recovery has been very, very slow, but part of that may be the return of cancer in his body. (We had about 3 1/2 weeks where there appeared to be no active tumors!) I won't mislead you - WBRT was much harder on him than either his initial body radiation and chemo. Fatigue was overwhelming and we used every imaginable cream/gel/etc. trying to relieve the burned skin. If your mom has only a few tumors at least talk with a neurosurgeon skilled in Gamma Knife. However, don't be surprised if your onc. still wants to do prophylactic WBRT. We may have made a mistake refusing to do it originally, but seeing what Steve has gone through with WBRT, I still think I would do it only if there is absolutely no other option. On a lighter note - the bad news is you can forget about hair on your head and most of your eyebrows, but you get to keep eyelashes this time! -
Been stopping in over the last few months when there are a few minutes to spare. Love the info and support to be found here and would like to give whatever we can also. My husband, Steve, collapsed in Aug. 2003 and after a week's delay caused by a misdiagnosis (Stage IV NSCLC and he was sent home with an inhaler for asthma which he has never had!) was found to have a lung fully collapsed with over 6 liters of fluid surrounding it, pressing on right lung and heart. He's 51, a non-smoker, super involved, active dad for our 14 and 16 year-old sons, and he's been my other half for the last 33 years. Our story reads much like so many of yours. He is struggling with the new series of Gemzar/Cis chemo which is decimating his blood counts, but he's not down for the count. He had been on track for Gamma Knife brain surgery, when his 4 brain mets disappeared. Unfortunately, those four were replaced with about 15 so it was WBRT instead. While he came back amazingly well from the original radiation and Carbo/Taxol, WBRT recovery has been pretty rough. Iressa is next up if we have to give up Gemzar/Cis (peripheral neuropathy is getting pretty severe in his feet), and we are counting on big miracles there. This amazing guy walked the Survivor's Lap on Saturday with his 87 y.o. cancer survivor mother., when he has been barely able to get around the house lately. They may have been the last two to make it, but their determination put them right up there with the champs. We're goin' for the gold!
and the onc. tried to convince us to do WBRT for possible cells. We refused (the neurosurgeon agreed with us), but I guess the onc. "won" the argument about a month later when Steve was dx'd with 15 lesions 
and thus began WBRT in 2/04. WBRT was extremely rough and Steve almost couldn't make it through it. The skin on his head was badly burned and his ears so swollen inside and out he had difficulty hearing. Recovery has been very, very slow, but part of that may be the return of cancer in his body. (We had about 3 1/2 weeks where there appeared to be no active tumors!) I won't mislead you - WBRT was much harder on him than either his initial body radiation and chemo. Fatigue was overwhelming and we used every imaginable cream/gel/etc. trying to relieve the burned skin. If your mom has only a few tumors at least talk with a neurosurgeon skilled in Gamma Knife. However, don't be surprised if your onc. still wants to do prophylactic WBRT. We may have made a mistake refusing to do it originally, but seeing what Steve has gone through with WBRT, I still think I would do it only if there is absolutely no other option. On a lighter note - the bad news is you can forget about hair on your head and most of your eyebrows, but you get to keep eyelashes this time!
I really don't want to be a copy cat but......
in GENERAL
Posted
Stats aside - this stuff is scary. Been down the road recently myself. You hang in there, go outside and yell good and loud that you have had quite enough cancer in your life and won't be having any more!!