I haven’t been able to get on line much these days, hubby hasn’t been doing well.
Today he told me he is tired of the fight ( quite unlike him), almost sounded suicidal... spoke about his suicdal note. He has had increased boney pain in new areas. Saturday night he sat up all night until 4 am with excruciating back pain and difficulty breathing. He has lost his appetite and is loosing weight.
Dx 2011, with Stage 4 Bone Mets (can’t think of numbers right now...mind is hazy from lack of sleep and emotional pain). He was treated with hormonal inj, currently on trelstar every 3 months , Zytega, prednisone daily, xofigo every month and Xgeva monthly.
His Oncologist, great guy, had an accident and is currently out. His two sons, part of the practice, do not have a great reputation.
Our children have been fighting with each other and I do attribute it to their dads decline.
I wanted to know at what point do they stop scans etc. I would like to do an MRI to see what’s up with the lungs and liver. Last scan was negative for lung, liver Mets.
Today I am sad, overwhelmed and not sure what is the next step. I appreciate your insights as I have grown to respect your awareness of this horrible disease.
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KingRasP
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I'm so very sorry you and your husband are suffering. I really don't have any helpful information, but know that you will be in our thoughts and prayers.
I haven't communicated in quite a while here but I received a lot of good advise from the many brothers of this community. Helped me through the bad. Your husband doesn't have to suffer as much as you are stating. I'm not sure if you have tried all avenue's available. Depression is a given. Palliative can prescribe to help with the pain and depression. I'm on an antidepressant called Trazadone. It has helped me especially to sleep. You can read my past postings if you like. Has your husband gone through radiation beam therapy for his pain? It was what finally helped me with my excruciating pain. I still suffer side effects, but no pain. I'm on a clinical trial now. It seems to be working so far. It's a battle for sure. Your husband will be in my thoughts and prayers tonight. Best wishes, Ralph
My feeling is that not all boney Mets are the same....especially osteolytic variants....radiologic agents imo are bad in such and will exacerbate the bone erosion...I also believe as my own experience bears out... a one cancer variant one drug treatment efficacy exists. Try something else....there’s so many to choose from. My heart goes out to darling husband.
Others more experienced might better testify......but cbd’s seem to be very effective in difficult cases such as dear husband’s. Please don’t give up.
I am so sorry to hear about what you, your husband and your family is going through right now. My thoughts and prayers are with you.
For the bone pains and difficulty breathing, Im not sure if you believe in essential oils but it has worked wonders for my husband, myself and my entire family. EOs like peppermint, wintergreen, copaiba, clove, etc can help with bone pains and then thyme, clary sage, frankincense, lavender, mint for difficulty breathing. Most of these essential oils are anti inflammatory, anti cancer etc. esp Frankincense, lavender, thyme, etc. They can be applied topically or diffused in the room which will help your husband relax as well. There are blends also for depression that you can find on the web. I never believed in EOs before, especially my husband, he used to laugh at me before. But when he had extreme vomiting, nausea after the first injection of Eligard (ADT), i put some essential oils on him and diffused as well, immediately he stopped vomiting and felt better. After that, he started using my oil blends for when he feels some joint pains, head aches etc.
Please do take care of yourself as well and stay strong. And may I also say that in these difficult times, where troubles and trials may seem to overwhelm you, always keep the faith and trust in the Lord.
“Know that with Me, all things are possible” (Matthew 19:26b).
Cling joyfully to that truth. This truth, accepted and firmly believed in, is the ladder up which a soul can climb from the lowest of pits to the most magnificent of heights.
I too have been working with essential oils for years. I am using the do TERRA oils and am a great fan of them. I used the oils on my husband as well and on myself now in the grieving process.
Everything you say about the oils is true; like the anti-inflamatory response and the anti-cancer properties that they are supposed to have. But, I honestly think, the situation that the two are in requires a doctor to look at things. What if they work with the oils for a while while things further deteriorate? Don't rely on the oils in this situation, would be my advice.
I have little knowledge to pass on as to the medical needs of your husband. However, I do want to say I’m so sorry he is suffering - and you as well. Sending gentle hugs and prayers your way.
I am sorry you are finding yourself in this situation.
Yes, I agree with you: You need to get scans done, a CT scan, an MRI and a bone scan. To me it sounds like the disease could be progressing. And your husband seems to know this too and perhaps this is the reason why he said to you that he is tired of the fight. I saw with my husband - well, I am only seeing it now looking back - that he gave me many signs like that, there were many situations where he was in very bad pain or discomfort and he would say to me, "What am I doing this for?" This was the Chemo. So he knew that he wouldn't live.
Anyway, get the scans done as soon as possible. When you ring the hospital and tell them how your husband is, they will hopefully have an oncologist there who can look after you.
Yes that’s my desire... I asked him would he want or know if the disease has further progressed? You are so right, because he said I know it has progressed. Today was a little better. The children have rallied to the call and tonight we had dinner together and that was therapeutic for him.
I lost my husband to prostate cancer in May. He had metastases to his liver. After 8 rounds of two different types of Chemotherapy he developed Pneumonia, then a Klepsiella infection and sepsis.
Oh Mel warm bear hugs for you. How are you coping? Pray you are taking things one day at a time and allowing yourself time to grief. The positive thing this disease is that it helps you to live in each moment, and create memories. Please take care and know that we care. Hugs!
That was so brutal.. as someone trailing behind Paul I’m inceradbly moved by your never ending love for Paul and for us.You are his champion and fortunate for us you are giving us your experience and love and helping us in the fight for our life’s. I’m happy to hear from you . I pray that h you have love around you always.. Peace Mel .Love from Scott & Shahrnoosh! Thanks!
Thank you for sharing your fight and struggles with us all. Your story for your husband and your family was very powerful to read, and made me think of all the others in similar fights. My thoughts and prayers are with you. Keep fighting and seeking help to the last bit of energy -- I just know you've reached deep -- and will to the last bit of your energy. He's lucky to have you, as are all the men here who have our wive's deep caring and love.
Thank you Flyboy1969, I don’t plan to stop until the end. I have assured him he will get the best possible care, will not let him suffer. We have discussed whether he would choose to be asleep with less pain versus enduring a little more pain and being alert. I don’t know if ther is a happy medium. 🤭
I have never smoked a joint or taken any illegal drugs... but as I've seen on this site many many men recommend a little MaryJane to east their pain and to relax them. May God help him and help you and your family.
John we are currently trying CBD with a small dose of THC and in 24 hours we have seen a significant improvement in both mood as well as pain. I have been very much against drugs of any kind ( not judging any one but have seen it’s devastating effects on families.) Totally sold, would even hold a placard, supportive of its medical use. Never say never. I won’t let my conservative views of life affect our decisions in managing his symptoms. Pray all is well with you . Cheers!
As Ralphiejr64 said, discuss palliative care. I've heard that studies say that not only does it relieve pain, it may improve survival. And a little pot, in whatever form he's comfortable, might not be a bad idea, depending where you live.
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