What do you do when someone wants to give up?

My husband was diagnosed with Stage 4 HL a year ago. It was very difficult to keep him going for the chemo during the first few monts. After a while, he seemed to accept that he needed it. They got all of the original HL, but there was a relapse Hodgkin's still there. He did not want to do anything about it. He thought he had about 4 years to live and didn't see the point. The doctor told him he would probably have closer to one year. That helped us to change his mind.

He decided to go through the I.C.E. program. He has been through the intense chemo and went in for the stem cell collection yesterday. Unfortunately, they did not get near enough cells and will have to repeat the process. He is having a great deal of difficulty/depression (understandable), and is considering dropping the entire thing again.

If anyone has any suggestions as to how to uplift his morale, I would appreciate anything.

Stage 4 HL has a way better prognosis than other stage 4 cancers. My son's dr. said it's like comparing apples & pumpkins...My son also has stage 4 HL and is going thru chemo now. He was disheartened at first too cuz of the side effects but was told that even though his outcome looks great that without treatment it is 100% fatal. He's 18 and has the nodular type--stage 4a-intermediate disease. Vicki

I told another friend today, IT AINT OVER TIL ITS OVER.....A friend had a very rare tongue, tonsil and throat cancer. Only the 5th in the world to be diagnosed. The drs told her there was nothing they could do because it was wrapped around her carotid artery, but she found a dr that went ahead and tried the aggressive chemo and radiation although he said it probably would not help at all. After her treatment she had a Pet Scan and there was no sign of cancer. The drs could not believe it. Never give up. I've been in remission over a year now. Hope he does well.

Shar
You should show your husband this site so that he can see for himself how many HL warriors are here some are still fighting and some of us have been servivors for a long time for me its been 15 yrs since i went thru my stem cell
transplant. If I didnt do this I would of died within 6 months as HL comes back each time its more aggressive than the last. I have no regrets I started to get to know HL when my son was 13 I was newly married today my son is 31 and has his own children and Iam stll married to the great guy that took such great care of me. And for my family I really never thought that they cared but when push came to shove the stood by my side thru it all. So tell you husband about this site I believe it will help. Give him big hug from me tell him to pls stand strong.

Shar - I'm a 30 year survivor of hodgkins, I was treated in 1980/81 and have been just fine ever since. And the treatments are even more advanced today. There will be some rough times, I know, but your husband needs to know that this disease is beatable. Hang in there and let us know how it's going, and feel free to send me a message if that might help.

Doug

I agree that he should see this site. As my hematologist says, "There are SO many options". Beating HL is a process, but it CAN BE DONE. IT HAS BEEN DONE. And if he wants to live bad enough, he will. It's a process, and there is a "point" to it. I know from experience that men typically don't want to "talk about what they're" feeling- I go to Mayo clinic, and they have many, many resources there for patients to get information, along w/ psychologists to talk to. I know I feel the worst when I dwell on the negative thoughts....I did it today. But there are SO many good things happening around me that how could these things not make me feel better? I pray that he doesn't give up- there are indeed so many options, even reading this site you see the different types of treatments people have gone through, that ARE successful. He just needs to realize, like I had to, that there are going to be bumps in the road, and that it is a process, but it is POSSIBLE TO BE HL. Many, many people have. And I without a doubt WILL. I've mentioned it on the site before...but the book "Chicken Soup for the Surviving Soul" made me feel like a million bucks when I read it. I don't know if he's a reader, but if he needs a boost, tell him to read a few stories.

To life.

Sorry but I can't sugarcoat any of this. It's very difficult from the patients perspective (and us caregivers). My son had gone through exactly what your husband is doing. The ICE regimen (4 rounds) and then followed by a Auto stem cell transplant. His day zero was 10/1/2010. His cancer came back again on 12/15/10. they then wanted him to do an allo transplant, which is when a donor gives you their stem cells. NO WAY he said. He shudders just thinking about having to go through the ICE and another transplant again. So... we are now in a clinical trial at MD anderson in houston. they have multiple new drugs to try on Relapsed HL patients. He just started his first drug MK-2206 9 days ago. Its a pill you take once a week. that's it. so far he has vomited twice and each time he wasn't nauseated before or after so the whole sickness lasted about one to two minutes. We have already seen his hemaglobin go up (had been going down since October and he kept needing blood to get it back up. he has gained a couple of pounds and his white blood cells are back in range. The point I am trying to make is, there are other options. It has never been brighter for HL patients than now. SGN35 is the hottest new drug out there for relapsed HL pts, although tests have stopped in the last month so data can be analyzed. they should start again soon.
On the down side though, a patient cannot take some of these drugs unless they have already failed a transplant, although there could be ways around that. Talk with your Dr and let me know if you or your husband would like to talk.

John
[email protected]
407-366-3509

Thank you, John. He is going to see his doctor today regarding the stem cell collection. They tried it once but could not get enough stem cells, so they are going to try again either next Monday or the following Monday. We’re not sure what the doctor wants to talk about today, as we have been through all the prep, etc.

I sent the information you have here to him to take to his doctor and see what he has to say about it. Pray that it gives him more hope. His attitude seems to be better these days, but I can never tell for sure, to be honest. I just know that, if the stem cell collection doesn’t work this time, he says he is done. Maybe what you are suggesting might be more acceptable to him. I’ll let you know what happens.

Thanks, again!! Shar

Shar,
they have a drug (one dose) that can be given to generate all the stem cells they need. It's very expensive (15k a shot I think) but it worked for my son after not being able to generate hardly any stem cells in two days that took about 8 hours. After he had the shot, the next day he was only hooked up for 2-3 hours and was able to give them more than they needed. I forgot the name of the drug but his Dr should know.

John

The used Neupergine on me to get the stems cells to pop and yes very expensive but gets them a poppen for sure.

Shar - Klovely hit the nail (I mean name) on the head. Ask Doc about getting your husband that shot.

I am replying to everyone, and thank-you so much for your advice and support. Unfortunately, the Neupogen shots help but don't do it good enough for my husband most of the time. He was given three shots at 800 strength which only brought his count up to 0.29. They generally want it to be 3.0. Not even close, huh? They are waiting a few weeks and trying it again. This time they are giving him even stronger doses. The problem, as you are probably aware - the shots activate the bone marrow and cause a lot of pain in the legs and hips.

He said that he is going to try this one more time. He starts the Neupogen on 24 February and will go in for the collection on the following Monday. I only hope they can get enough to do the transplant this time.

John: He asked the doctor about the pills you mentioned. The doctor told him that was not a consideration 'at this time'. But I told my husband that your son had gone through the transplant process four times before they allowed him to try it. I'll keep you posted about that, and, thanks again!!!

Thank you everyone. Your support and guidance is really appreciated. Shar

Hey Star. Sry but I had it wrong. It was not Neuprogen. Actually he was given Neuprogen, but it just wasn't working. What worked was getting on injection of a drug called Plerixafor. That will do it for your husband. Ask your Dr about it. I'm surprised he did not mention it. Also ask your Doctor about being put into a clinical trial that reduces the toxicity of the HDT drugs he will get just before the transplant. Today, everyone receives the same ammount of drug(s) for HDT used with a transplant, regardless of age, weight, metabolism... These trials (called BK Directed Dosing) attempt to dose just enough for each individual patient. They take some blood and gather other information to determine how much of a drug the patient would get. My son was able to get 1/3 less of a drug called Busulfan during his HDT. Go to www.clinicaltrials.gov. This site list many, if not all drug clinical trials going on. Do a search on NCT00948090. This was the trial my son was in. Ask your Doc about it, There are many of these type trials going on that can and will assist your husband in having lower side effects. My Son started with stage 2A and then it was stage 4A. He will beat this battle, just like your husband. **** CANCER!
Good luck. Hang in there! This can be just as depressing for the caregiver as the patient. Mostly because there is nothing we can personally do.

Please tell him that he has not accomplished everything he wanted to accomplish when he was a Kid. He will know what I am talking about. Every guy has something they need to accomplish that they told their friends when they were young. He still has too many things to do!!

Update: My husband has been going through the stem cell collection process. They got 3.6 million cells, which is really good apparently. If his platelets are at 75,000 tomorrow morning, he will be going into the hospital for the rest of the procedure. Please keep your prayers with him.

Thank you all for your suggestions and support. I really appreciated it. I have never been able to find a group that I could talk to around here, although I know there have to be some. They are just not as accessible as they should be. So, I really appreciated you allowing me to vent, etc.

I'll let you know how this goes.

Shar

Well, unfortunately, my husband's depression led him to the library where he found plenty of information to base a decision of not going through with the stem cell transplant procedure. So, we are back there again. I asked him if he was going to discuss this "new" info with his doctor, and he said 'no'. He's just going to e-mail the nurse practitioner and tell her to put everything on hold; that he has doubts as to whether he's going to go through with it.

If what he told me is true, I can understand his hesitance. However, so often he takes things and magnifies them in his head. Plus, they show every possible BAD case scenario but sometimes neglect to indicate the GOOD cases, also. He thinks this is going to cause him to acquire other cancers, never be able to be around people again because of infections, not be able to return to work, and on and on. This is not the way the doctor described it to us. So, I don't know what to think.

He is just going to have to make his own decision, and we are all going to have to live with it - good or bad. I've tried very hard to stay optimistic and keep him the same. Unfortunately, I have apparently been a dismal failure because he is still bent on letting himself die. He already thinks the cancer is back in full bloom, so where does he have left to go?

I am to the point of thinking that I need to begin preparing for a life without him. He doesn't seem to much want to spend anymore time with me. A divorce would be one thing. But to feel that someone would rather die than spend any more time with you is a little much for a person to take (and probably an over-reaction on my part). Maybe I'm making this about me now, I don't know. But all the times I've wanted to scream and have not been able to do so are really building to a point where I can't deal with it anymore. I'll stay with him through it - but I will have no more input into his situation. He has to do what he has to do.

Sorry to be so negative and thank you for allowing me to vent. I appreciate all your information and support, but I can't continue with this. If it appeared that he wanted to live because he wanted to live, I would do anything necessary. But through this entire ordeal, it has always been more about him dying than about him surviving. I don't think I can give him the will to live any longer. If he does not have it within himself, I cannot fill that need for him.

Thanks - I'll let you know what the outcome ends-up being. Pray for us.

Shar

Shar,
If he refusing to go through with more 'toxic' treatment, is he against doing a clinical trial?
Http://www.clinical trials.gov lists just about every trial going on in the the United states. He will not qualify for some of them because he has not relapsed from a transplant, but there will be some to try that should have minor side effects compared to something like ICE or even ABVD. If you want some help identifying and contacting the people running the trials, I'll be happy to help. Just let me know. I would also need to know what city you are closest to and if you are for or against traveling.

John

John,
I checked the clincaltrials.gov site. I didn't see anything in our area of the country that would apply to his condition. I actually doubt that he would be willing to travel anywhere, anyway. He is just so against any type of treatment at the moment. Besides, if he is afraid of after effects that I have seen on sites but which seem to be from studies done from procedures 3-10 years ago, I doubt that he would have the courage to go through something that has no history to go by.

I think my only hope lies with the nurse practitioner. He likes her really well and may listen to her. I'm hoping that, when she receives his e-mail, she will call and discuss this with him. I have my doubts that the doctor will get involved because of Dewey's past behaviors. He has a lot of patients who want help and to get better. (One time he stomped out of their offices swearing to never come back and later wanting one of the nurses fired because something [I think an appointment] got mixed-up.) I rather doubt that the doctor will get involved. He has so-o-o many patients who actually want his help and want to live (I personally know two of them.) I can understand if it would be difficult to justify taking so much time fighting with one patient at the expense of others.

If I sound bitter, it is because at this moment I am angry, frightened, & frustrated. I am a really strong person and have dealt with a lot in my life, but everyone has their limits. I may have met mine.

Thanks again, John. I truly am trying to hang in there. Hopefully, I'lll feel better after a night's rest.

Shar,
I understand... Really. After the ABVD failed for my son, he started talking about just dying or stopping any additional treatment and just see what happens.
You need to take care of yourself too Shar. Sometimes this can be just as hard on the care giver as the patient. The stress, depression and sometimes anger that caregivers feel can be absolutely exhasting, not to mention the frustration and helplessness.
Try to take a day or more for yourself. Its not being selfish. You need to recharge yourself. Hopefully your husband will make the right choice, whatever that is.
Let me know if I can be of any help down the road

Take care

John

Thanks,John. I understand what you mean about the helplessness of the caregiver. Getting time for myself is almost an impossibility. Between cancer husband and Asperger's son, and work there just is no time left. I go to a jazz workshop with friends (out of town) once a month. Even though my husband is not a musician, he comes, also. This month I was actually looking forward to going by myself because he would be in the hospital (I was going anyway. Felt a little guilt but knew that I needed it.). Now he willl be going. This is the third workshop that something like this has happened. I will have it all planned to have time to myself, and something happens that allows him to come along.

He has mentioned his plan for tomorrow a couple of times today. It has me so upset that I don't even acknowledge that he said anything. Just do whatever it is you want to do but don't keep telling me about it. This entire thing is difficult enough without him talking about it. I know he wants to discuss it, but I'm not going to. I can't condone or agree with his decision, and I'm not going to get into an argument about it. He has always said that everything should be his decision - so be it. I don't want any part of it.

What makes things even harder is - I found-out yesterday that a very good drummer friend is dying of cancer. Apparently it is just a matter of possibly days. We have known for a couple of years that he was in a fight, but apparently he is finally losing the battle. He's a tough guy. It had to take a lot to knock him down. But I've known him for almost 40 years - longer than my husband. Interesting cancer - they found it on his tonsils originally - thought they had it - then a year later it came back. **** stuff!!!! Cancer - why is it here and why won't it go away?