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Going downhill quickly and looking for Help!!!

ga_dawg
Posts: 11
Joined: Mar 2013

 This is Ga_dawg’s wife. He first joined this group in March of this year after he had his kidney removed. He is not doing well so I am taking trying to find out any information I can that might be able to help us.

Ga_dawg was diagnosed with stage IV RCC in 8/2012. Cancer was in his kidney, both lungs, spine and left scapula. He began radiation on the bone mets in September and began receiving treatment at  M.D. Anderson in Houston, Tx in 10/2012. He began Votrient in 11/2012. Test in January 2013 and March showed the extensive therapy effects. In March his right kidney was removed and in April he began Votrient again. In June when we went for test there was some tumor growth in the lungs and, but the doctor wasn’t convinced the Votrient had stopped working and he continued on the Votrient  for another 10 weeks. During this 10 week period,  his BP meds were changed and he began taking the beta blocker, Bystolic. Almost immediately he began having more trouble breathing, diarrhea, etc… and refused to let me move his appointment up. He was so sick on 8/12/13 he finally agreed to see his local oncologist. CT scans were completed, but because they didn’t have his most recent scans the local radiologist couldn’t really give us any information on the tumors. He did say there was some fluid on the left lung, but not enough to be really concerned with. He was dehydrated so they gave him fluids and told him to stop the Votrient until he could get to Houston.

On 8/16/13 we saw his oncologist at M.D. Anderson and he was immediately hospitalized. Between 8/12/13 and 8/16/13 the fluid in his left lung had increased drastically and on 8/17/13 it was drained. The GU oncologist decided the Votrient had stopped working and although the tumors in the lungs had not grown much, the ones that had grown, were in the pleural lining of the lung and this was causing the fluid buildup. The decision was made to start him on Avastin, Gemzar and Xeloda because they felt the RCC had changed molecular structure and they believed this treatment would work. We spent a week in the hospital in which he was given a treatment of Avastin and Gemzar as well as two units of blood. When we left 8/23/13, he left on oxygen.

Since returning home he has had another round of Gemzar and Avastin as well as two more units of blood. He also began taking 3000 mg of Xeloda a day on 9/7/13. Although he was on oxygen and still somewhat short of breath when we got home, he really wasn’t too bad. Since his last chemo treatment on 9/5/13 he seems to have really gone downhill. He is very weak, has lost his appetite, just wants to sit in his recliner all day, sleeps constantly, and is very forgetful and somewhat confused. He refused to do little exercises his pulmonologist has recommended. He is to have scans and x-rays again on 10/4/13 when we find out if this treatment is working. At this point, I am unsure if his condition is due to the cancer or the treatment. Also, on 9/12/13 a visit to his pulmonologist found has pneumonia beginning in his right lung so he was put on antibiotics. The only good news we have gotten is that the fluid on the left lung has not built up enough to require a catheter be inserted, so I’m hoping this is a sign the chemo’s are working. He also begins physical therapy tomorrow and I’m hoping this will help some. His doctor in Houston is also going to prescribe the drug megace to help stimulate his appetite.

I am sick with worry and I’m really afraid I could lose my husband any day.  I have asked if he has given up and he says he hasn't, but I'm not so convinced of that. I have tried to do everything I can for him and I have been by his side at every step. Is there anyone out there who has had experience with this treatment and RCC? Are any of you familiar with megace? Any ideas on what I can do to help build up his strength? Any guidance or information you can offer me will be really appreciated. He was doing so well until about mid-July and like I said, I am scared to death right now.

Thanks!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Some of us could pitch in about our own experiences on the chemos, appetite stimulation etc but none of us is in a position to compete with MDA for advice on the best meds for ga_dawg! 

But there are other dimensions and I can't recall whether or not you've had a go at mind-body medicine, e.g. Meditation or Jerry White's guided imagery program? 

Because you're unsure whether he may be giving up (and who could blame him!) I strongly commend some good counselling sessions to relax you both and to keep his attitude right up there to give his immune system every possible assistence.  (Just an attempt to be helpful, from one in much the same situation.)

Hang tough and good luck!

ga_dawg
Posts: 11
Joined: Mar 2013

Texas_Wedge, thanks for the suggestion of counseling. I'm going to talk with his local doctor regarding counseling, it certainly can't help. He had been so positive and strong up until this last incident and I think it really scared him and hit home that there really is no cure for this awful disease.

Take care and best wishes!

Sandi45
Posts: 25
Joined: Sep 2013

I am new to this whole situation so I can't give you much advice at all. I just wanted to say what a wonderful person you are for being such a tender, concerned care giver. Being a care giver is a very difficult role and I think that being scared to death is probably a pretty normal feeling, although not a very fun one. 

Many virtual hugs to you and your husband. Take care of yourself also. 

adman's picture
adman
Posts: 260
Joined: Jul 2012

Sending you my compassion and prayers, God Bless!!

 

BLKJAK
Posts: 108
Joined: Apr 2013

You say he sits in his recliner and sleeps alot and has no appetite. Has he been evaluated for depression? Perhaps having an antidepressant prescribed might help with his will to fight by taking him out of the dark places of his mind. Being in this position I know that I'd be in a bad place without my antidepressant or antianxiety meds.

I wish you the best and the strength to face whatever is ahead of you.

BLKJAK

ga_dawg
Posts: 11
Joined: Mar 2013

Much thanks BLKJAK for the suggestion of an anti-depressant! The thought he might be depressed has actually crossed my mind several times. I am going to talk with his local oncologist about some counseling as well as an anti-depressant. His doctor in Houston has offered to call in a prescription for one and I'm thinking it sure can't hurt.

Wishing you the best in your continued battle with this terrible disease!

danbren2's picture
danbren2
Posts: 179
Joined: May 2013

Wife of ga_dawg,

None of us are alike in how we react to the meds, I wish we could give you some miracle advice that would make everything all better for you! Just keep doing what you are doing to help your husand, and find some one that you can lean on and vent to! I will be praying that things turn around for you and your husband and that he gets to feeling much better.

                                                                                   Sending, love, prayers, and good health to you both!

                                                                                    Brenda

NewDay's picture
NewDay
Posts: 170
Joined: May 2012

Hi ga_dawg's wife,

I'm guessing from your ID that you are in or from Athens.  I am a neighbor in Bogart.  I have not been in your shoes so don't have advice to offer except to continue coming here for support and I know that any here who can will help  Also, do consider exploring antidepressants and counseling.  I've heard only good things about MDA so he's in good hands.  I'll be praying for you both

 

Kathy

ga_dawg
Posts: 11
Joined: Mar 2013

Hi NewDay,

Actually we live in southwest Georgia near the Florida line, we are just huge Bulldog fans. Our son is attending the University of GA and is in his senior year right now. I have found this site to be a lot of help and the support is awesome. I am going to talk with his doctor regarding counseling and an anti-depressant in hopes this will pull him out of this funk he is in. He actually went for physical therapy yesterday so I'm hoping this helps some too. He completes his second week of Xeloda on Friday and will then be off for a week so I'm hoping things will improve some then also. Thanks for the prayers, they have pulled him through many times!

a.oakley
Posts: 32
Joined: Oct 2012

I am a caregiver to my husband, and I understand how you are feeling right now.  You sound like a wonderful wife and excellent caregiver.  I think you are on top of things and doing the best that you can do.  I agree with others who have stated that you are at an excellent facility and are getting the best care available.  I have also watched my husband go downhill for a time, and then he just gets better.  We havent been able to figure out the cause of the downhill trends, but we do rejoice with the good days that follow.  I've asked the docs if the side effects are from the medications or the disease, and they generally answer "a little of both".   My husband went through an episode of no appetite either and lost lots of weight. He was prescribed Megace and it worked like magic.  He is eating so much better.  We are attempting to have a schedule with meals and naps and moving about.  I'm sorry that this is all I have to offer you.  I hope you find a moment to take a deep breath and renew yourself and have a friend to lean on and listen to you.  We will gladly help you on this site to the best of our ability.  Kind thoughts and prayers are sent to you and your husband.

ga_dawg
Posts: 11
Joined: Mar 2013

Hi a.oakly, His doctor at MD Anderson keeps telling us he feels this is just a bump in the road. To me it feels more like a big gully! I have lots of faith in the doctors at MDA, it's just so hard to see him not getting any better right now. I know we are going to have good and bad days, I'm just missing my happy, positive, strong husband. I am glad to find someone who has experience with megace. Did your husband have any bad side effects? We actually discussed last night having a schedule for his exercises and I've been trying to keep him on  a meal schedule. I'm also checking into counseling and an anti-depressant as suggested by others on this site. I have found the information on here to be very helpful and after reading all of the post, I almost feel as though I know many of the users.

angec's picture
angec
Posts: 621
Joined: Mar 2012

Hi there! It has been a few days since your post and I am hoping that hubby is feeling a little better!  I guess with all that has happened maybe he is just a tad tired and run down.  Especially with pnemonia starting (hopefully it didn't get far since he got meds for it), that in itself can make him out of sorts.  Praying that he returns to his usual strong self very soon! Keep the smile on and and the hugs coming!  Sometimes you don't even have to say a word, just sitting close by and holding hands can help him feel better. Praying for you both!  You are such a loving caregiver, stay strong! Sending hugs your way!

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