Anyone with experience of WBR?

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Anyone with experience of WBR?

by panther37 on Tue Mar 11, 2014 10:19 AM

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My husband (diagnosed Stage 4 NSC Lung Cancer, mets to adrenals) not been going well and has spent most of the last month in hospital--firstly for pain management (ketamine reset, which has done the trick), secondly for dehydration for excessive vomiting, where tests picked up the cause was brain mets. He then had a craniotomy 2 weeks ago to remove it and was in hospital again for that, obviously.

The surgery was a success, but they wish to do whole brain radiation as a precaution for any cells not yet showing on the MRI. Some of the side effects are quite scary, especially concerning short term memory loss and 'cognitive effects'. Not doing it also runs cognitive risks as well, but I'd be glad to hear of anyone's experience with WBR in terms of how bad the effects were and how long they last. 

Many thanks.

 

RE: Anyone with experience of WBR?

by Marie55 on Tue Mar 11, 2014 01:51 PM

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I am truly sorry for all you are going through. My husband had stage iv nsc lung cancer which spread to spinal area and adrenals, bone. He was diagnosed early July and passed on Sunday. He had spinal chemo, radiation and chemo. His scans in December showed no spinal cancer, and tumor was shrinking. But, so many complications incurred over the months. This once strong man lost the fight.... My heart is broken.... I will keep your husband in my prayers.

RE: Anyone with experience of WBR?

by SarahGrey on Wed Mar 12, 2014 03:16 AM

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Hi Panther37,

Firstly, everyone obviously responds differently to WBR, but...

Before I respond to how it affected my husband, may I ask a sensitive question?  You mentioned your husband is Stage 4 - has the doctor said an approximate "expectancy"?...  

My overall thought, is...  WBR is rather rough.  Some people never fully recover.  It can wipe you out 100% and make you sleep most of the day and into the night...  And those effects can last for months.  

My thought is, if your husband's life expectancy (which is always just a "best guess" by doctors and not 100% reliable) is just a few months, then maybe consider not doing the WBR.  BUT, if they think it can give him years, then consider doing it...  

Before going through with it, your husband and you should have a completely open and frank conversation with his oncologist(s) and weigh the pros/cons and discuss quantity and quality of time.  

That all being said, despite the effects my husband endured, I know he would have likely done it again even if it only gave him a few more weeks...  Everyone is different and your husband needs to do which brings him peace.

I hope some of this helps and gives you guys at least some things to discuss with his doctor(s).  

Wishing you both all the best, Sarah

RE: Anyone with experience of WBR?

by cancerloss on Thu Mar 13, 2014 12:36 AM

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First, I commend you for your loving support for your husband! This journey is a tough one...real tough. My sisters and I have been on it with our mother. She battled the same cancer with the same exact mets. She was told by some of her doctors that she had to have WBR and soon. She had managed to beat the cancer for almost a year, but when she had to switch chemo after an allergic reaction, the cancer spread to her brain. She had only pinpoint spots, however, according to CT scan. We thought she had to have it to preserve her life. That seemed to be the emphasis anyway. Our mother rushed around and handled legal matters the week before she began WBR. She was fully ambulatory and had her full mental capacity. She was scared and didn't want to have the WBR. Turns out her fears were realized, unfortunately. In less than a week after WBR started, she could no longer write her name. She became very quiet and unable to walk without assistance. Soon after that, she had what was apparently a seizure because her dental bridge feel out. She began to curl her hands inward. Within a month of the start of WBR, she passed. The irony is that they told us if she not have the WBR, she would probably only live less than 3 months. With WBR, she did not quite make it to a month after treatment. My sisters and I decided that had we been better informed about the potential damage of WBR, we would not have encouraged our mother to undergo it. She couldn't get out of bed just a week after WBR and so her quality of life was greatly impacted. Her loss of cognitive and communicative abilities was unbearable. She was 74 years old. WBR was recommended for most at the time in 2008. Since that time, caution is now given for treatment of the elderly with WBR. The advantages do not necessarily outweigh the disadvantages. We wished she had not had WBR. I'm thinking that your husband is quite a bit younger. If so, he may be able to handle the treatment without such a dramatic impact. I wish you the best as you make that decision. Perhaps your husband can go with his gut on whether to do it or not. My mother went against her gut as everyone around her pushed her toward WBR treatment. We were told that WBR would cause extreme fatigue and require a few weeks, maybe a few months recovery. We never imagined the decline would be so rapid.

RE: Anyone with experience of WBR?

by panther37 on Thu Mar 13, 2014 04:46 AM

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Thanks for the responses everyone. Sarah, the question of how much longer he has left is a very valid one but a tricky one to negotiate, as he doesn't want to know himself. He has only asked once--at the beginning of treatment last July--in which the answer was 6-9 months without treatments, and 12-18 months if it was successful.  

He started to go downhill in January, and I asked his GP and oncologist then how long they believed he had left, and they said it was difficult to say but based on the increase in his pain medication and other symptoms, around 3 months. He doesn't know this or know I asked. Only his sister (who I told) and I do. I'm not sure if it was ethical or not for me to ask, or ethical or not to withhold it from him, but I need to get our kids through this somehow and be able to negotiate what's ahead, and he is still in a lot of denial over how quickly it is progressing and I really think he needs to be the one to ask when he is ready to do so. That estimate was also given prior to recent developments, which showed the cancer spreading significantly through the lymph nodes, and prior to the brain mets being discovered. His tumour markers yesterday, which had previously been relatively stable, were also very significantly raised, which shows the cancer is on the move, but there's no way of knowing whether it is on the move in the brain or elsewhere at this stage. 

I'm sure cognitive function is important to everyone, but my husband is an academic and is trying to finish a book. This is one of the few things he has left that gives him meaning. The reality is the fatigue from the cancer and current chemo regime is already making that incredibly difficult, but the effects from WBR would make it impossible. That loss of his identity as a known and successul individual in the world (or more accurately, the loss of the last hope that he can be that person again) would destroy him. (He has so far, somehow throughout chemo, also managed to keep his beloved hair, which would go with WBR.)

The effects of not doing the WBR are also quite scary, in terms of it returning to a non-operable part of the brain and/or it then being too late for WBR; the range of side effects depending which part of the brain it returns to; the risk of stroke etc. The radiologist is fairly confident there are still cells there which aren't showing up on MRI.

He doesn't know what to do, and neither do I. It's completely his decision. I guess I'm just trying to learn what this next phase will be like so I can get our family through this.  

manishajain manishajain
(Inactive)

RE: Anyone with experience of WBR?

by manishajain on Thu Mar 13, 2014 07:01 AM

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sorry to know about your problem .. u can check dr. yeshi dhonden treament . ols check on net.. ts very effective ...

RE: Anyone with experience of WBR?

by TinaBotes on Thu Mar 13, 2014 07:48 AM

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I'm so sorry to hear! My husband had a large tumor from melanoma in hos frontal-parietal lobes (right side) which was resected in October. He had 3d conformant radiation to the wound bed. It is now three months later. He has lost the hearing in his left ear, he struggles to concentrate and he has severe vertigo which keeps him housebound. He also sleeps about 18 hours a day. But - his chances of survival changed from 6 months to - quoting 2 oncologists - " maybe even 10 years". The exhaustion from the radiation is quite extreme.

My thoughts are with you and your family. It is very tough. Remember to take care of yourself!

RE: Anyone with experience of WBR?

by panther37 on Thu Mar 13, 2014 09:57 AM

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Thanks Tina. The brain met he had removed was on the right frontal lobe, which would have effected cognition if not removed, and which was causing unpleasant symptoms already. They wish to do two weeks of WBR and then a third week just targeting that spot. We are booked in for mask fitting and measuring MRI in two weeks, so I guess he has until just after then to make a decision as to whether or not to go through with it. I've learnt that two weeks is a long time in cancer world so we could be presented with a whole other series of problems by then, so maybe the decision will be made for us. I hope your husband gets stronger and has many years of happiness ahead.

RE: Anyone with experience of WBR?

by cc104 on Thu Mar 13, 2014 10:31 AM

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Sorry to hear about your husband. No one can make that choice only you and when we are advised by the professionals we are afraid not to have it.

My husband had his surgury for a brain tumour 13/03/13 a year ago today, it was followed by radiation and Chemo.

He was fitted for a mask and had radiation every day for 30 days, he was very well after surgury but radiatin has fried his brain he is weak on his rt side and his speech is also affected , I am grateful to still have him Thank God. He is now on AVASTIN and is doing well. I would have been afraid not to have had the radiation. Whatever choice you make I wish you success and I will include you in my prayers. God Bless you both.

RE: Anyone with experience of WBR?

by voncole on Thu Mar 13, 2014 03:26 PM

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Good Morning Panter37,

I was also diagnosed with stage 4 lung cancer in April 2013, since then I have had the lower part of my left lung removed which at first it was thought that the whole left lung had to be removed, but thanks to God blessing my sugeorn with the skills that he has, just before going in to remove the whole lung, while I was under he gave me a biospy to make sure that the cancer had not spread to my throat and chest area and again thank to God at that time it had not so he was able to continue on to the lung and discovered that the tumor was not laying in my lung but outside of it and only had to remove the lower left due to he did not want to take any chances of missing any spreading being that is was so close to the lower left part..My sugery went very well and I was put on a 4 session of chemo just to make sure nothing else was lurking out there.

After my surgery, I started my chemo in July of 2013 and ended it early Sept 2013. A week prior to a follow up appt to have my port flushed and to see when my onocologist was going to schedule me for my last Petscan to make sure that everything went well and was still going well and to tell my husband & I when she would be able to remove the port, I discovered a lump on my right buttock cheek.  The story to how this happend is long, but what I want to tell you this was discovered in October after the biospy and another Pet whiched also revealed that I had to spots on the brain, 2 small spots in my back between my shoulder blades and 2 spot on my brain which they said one looked suspicious and they really was not worried about that one but they would do radiation on it as well just to make sure nothing comes from it. Well as you may know from your husband the reprecussions of chemo, I also did not have the best of experience with it. I spent the whole summer in my room just miserable as the days past to fall, but I got through it.

The sessions for my radiation started early January 2014 which I had a few sessions for the lump on my buttock, after that I had 2 sessions for spots on my back and what they called cyberknife was the session that I had for the 2 spots on my brain. As you may know the radiation process does not hurt, but the after affects could come well for me came I think a month later. From a few week after the radiation treatment I started getting really bad back spams to the extent that I was not sleeping for weeks. No of the pain killers they were giving me were holding me and I am not one to take any painkillers with narcotics so I was only left with Motrin and finally they gave me Tremadol which was what help me after my lung surgery being that I also declined back then anything with narcotics.. The radiation on my back really helped me because before the radiation I was getting really bad pains down my right arm to the extent that I was getting no relief no matter what.. Now it seems that that pain went to my back and around my breastbone.. I have declined to do anymore chemo or radiation. As of January, I have decided to go the Hollistic way and with God's help I have been seeing it work. I have now been on Protocel since January 30th and as of last March 6th, I added a hollistic treatment call Pawpaw which you can alone or with the Protocel to help get rid of the tumors and cancer even faster. I had to step out on faith, the doctors were only given me grim stories about the only other thing may help is some more chemo which I knew I could not take and would eventually kill me anyway. I figured if I was going to die, I was going to fight like hell first.. I am not ready to leave my life here on earth and although I know and believe that no matter what meds you take or whatever you chose to do that God has the final call on everything, I knew in my soul that he is not ready for me to come home to him right now, but this was part of him plan for my life right now and he wants me to strengthen my faith and believe only in him and to fight for my life and this is what I am doing. Up until a few days ago my back has been really hurting me to the point like I stated above none of the painkillers was helping, I was really starting to get depress, it's not tht I did not think the hollistic treatment I took was not working, I had only been on Protocel for a little over a month and although in tht month I was seeing results which was very assuring, but when you are in such pain and dealing with the condition as your husband and I, it can put doubt in you which you have to really fight to get out of you. As of 2 days ago, and I mean 2 days ago, which was Tuesday, the night before I had become a little worried due to my doctor finally got me to try Dalaudid and valium the previous which the valium did nothing for me and I had to double up on the Dalaudid to get any relief and I do mean any because of my high resistant to medication the Dalaudid would only hold me for 3 hours not the entire 6, so as to not overdose myself and my fear of addictions, I would suffer the next couple of hrs until it was time for the next does.. but on Monday, I was down to my last two and did not call my doctor to tell her because that day I had to go in anyway to have my port flushed. Once I got there I was unable to see her and was told to send her a msg by email to see if she would refill the Dalaudid's.  I went home, sent her the email right away and took my last 2 Dalaudid's at 9 pm Monday night. I woke up at 4:30 am to make my husband a dish for his luncheon that day and notice that I did not feel as bad as I always do when I wake up, crawling out of bed or can barley get out of bed due to I have been up all night either taken my hollistic meds every 6 hrs or just having to get up for work or the pain. So I am thinking to myself, wow I feel pretty good. I was really afraid to think any further, but went with the flow. I felt a little achness at my lower back and took a motrin 600mg at around 5:30 am and i knew it was only God because duriing the whole day Tuesday I did not have one pain.. My mother & sister spent the whole day with me, I did not want breakfast, but by mid morning I made myself a chef salad which really filled me. Still feeling very well, my doctor's nurse call me to follow up on the email I sent and I told her what was happening, she stated that it could have been the Dalaudid I took the night before which was well over 16 hrs now, and the Dalaudid's are on 2mgs a piece, but she stated that they have an after-life and that may have been what kicked in or it could be my hollistic treatment...The way i felt I knew it was not the Dalaudid, I knew it was God working that treatment for me.. After my Mom & sister left, I was still feeling well and decided to try to clean up around the house a little due to not feeling well I have not been doing much, not to much just a little, but I guess I forgot I am steal healing and need not to be doing anything.. I started feeling a little achey and had to lay down. It is now about 5 in the afternoon and no other motrin since 4 am that morning, I layed down for a couple of hours and continued to take my hollistic treatment throughout the rest of the day and even ate a decent amount for dinner and slept well for the first time in over a month. I spoke with the nurse yesterday and told her how I was stil feeling which was pretty good yesterday and she even had to state, it much be my hollistic treatment kicking in which I told her I also agreed but with God's help.

I must be honest with you in that last night was not a good night for me. I started getting those bad sensations throughout my legs and back most of the night, I still have not taken any other Dalidud's since Monday, but I did not need it, I did take a motrin but it was way past 8 hrs since the last one that I took. Honestly what I think was going on was that storm, I notice in early February when we had bad weather, my body really ached, last night it was the same feeling, not a pain more like a bad sensation going throughout my body,as if something was knawing at my nerves and I could not shake it. My husband tried to mesagae me but it only made the feeling worse, it felt like any direction his hand would move to annoyed the sensation my body was feeling.. I know it sounds crazy, but like I told my husband, the hollistic treatments that I am on, Protocel & Pawpaw deals with cancer & healing your body on a cellular level. Nature in itself is on a cellular level and I truly believe I am one of those people that are very sensitive to our atmosphereic chngs in our universal and although I have always felt it throughout my life which I have always chalked up as something else, I guess due to I did not know how to address it or want to, as and adult now, more wiser, more realistic due to growing up and being assured of my spirtual side which i have never even talked to my husband or mother about until this day, and at this current time I am 53 yrs old, I really felt nature and the healing process within my body last night.. The sensenation was so bad last night I could not take it any longer and got up around 10pm and took a motrin 600mg. I woke up at 6:30 am which was very good for me in light of my recent sleep habits and it is now 11:14 am. I have been on my computer working from home, I have taken my hollistic meds for the morning, I have made my bed, had a cup of coffee which I really should not have, but one is not going to hurt me once in a while and I do use brown raw sugar, and I must say at this moment I am feeling pretty alright. I am feeling a little achness at my lower back, but I am not going to rush to take a motrin, I am going to get in the shower put on some clothes, take a 15-20 walk around my neighborhood, come back see how I feel and if I still feel the achness I will take a motrin. For now I am going to thank God for giving me the life and strength to wake up this morning to another one of his miricales the cold beautiful day, I don't even like the cold, but only God knows how glad I am here to feel, smell, and walk in it... of course I am going to take my treatment on time and live the rest of my day... I know I have written you more than you probably wanted to read, but when I saw your post about your husband and it related to lung cancer as well as the brain part I became very interested. I am a person that usually finds it hard to put my words on paper, my husbands get on me about it all the time, but as you may see, when people as the people on this site will come together to share their story of success some not so successful for whatever reason but a lot of sussess as for the Natural/hollistic way that has saved a love one, these stories will bring out a different person in you. It did for me, I think I share more of myself on this site than I have share with some of my family members..and it feels good. When I say my prayers I am going to pray for your husband's successful recovery, along with other's and myself on here. I will also keep you all posted on how my Natural treatments are working for me and I will look forward to hearing how well you are doing..

Thanks for listening,

Voncole

 

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