topic Re: Only a few months in Facing end of life

Only a few months

Jenniferwang — Thu, 19 Apr 2018 05:01:53 GMT

Hi my husband has been battling stage 4 mantle b cell lymphoma for 8 months now. All chemo has failed and been told his cancer is terminal and only a few months to live. We both are devasted. We are so lost.

Re: Only a few months

Budgie — Fri, 20 Apr 2018 03:00:21 GMT

Hi Jenniferwang,

I’m sorry to hear your news. Even though the doctors have given just a few months more, they don’t know exactly when someone is going to die.

It depends alot on the persons attitude & whether or not they are ready. If he’s in alot of pain & depression, he may go sooner. If he’s going well, he may go on for a long time to come.

I am very sorry. Please take care.

Budgie

Re: Only a few months

Jenniferwang — Fri, 20 Apr 2018 12:07:34 GMT

Thank you budgie. Had cried our eyes out with family yesterday and today. Total loss. He is not in the great health. He is weak. But we are still fighting.

Re: Only a few months

Jenniferwang — Sat, 21 Apr 2018 13:50:06 GMT

Ok i will look into it

Re: Only a few months

selinam — Tue, 22 May 2018 11:14:26 GMT

Hi Jennifer, I am really sorry to hear about your husband. This is horrible news.

My dad was given similar news 6 weeks ago after living for 12 months with a stage IV bowel cancer diagnosis. He is 65 and I'm 30. I am now caring for him full time.

There's not much anyone can say in this situation, but I want to offer some words of advice that have helped me in the past few weeks.

Firstly - there will be moments of beauty. It's not over yet. There will be days where things will seem completely normal. Make sure you seize those days with both hands and enjoy every second of them. Every day will be different and some days will be good ones. On the bad days, cry as much as you want. I like to drive away in my car and just scream. Then I pick myself up and get back to it.

Secondly - make sure you are accessing all the help you can get. You may need to do your own research as the doctor will not always tell you what is available. Depending on where you live there's likely an amazing palliative care support team available to you. We have nurses that come every day, that is a completely free service. Some days we don't need them, but they come anyway. And they are not just for your husband but for you too.

Nobody is alone in cancer. It's happening to both of you, but know there is support around you and that everything will be ok. Just take this time to love him as much as you can.

I wish you all the best ❤️

Re: Only a few months

Jenniferwang — Wed, 30 May 2018 10:24:32 GMT

thank you selinam. Yes we have Silverchain coming to visit my husband and the doctor came too. they are very nice people as they call daily to check on my husband.

his condition got worse and we had to take him to emergency and end up staying in the hositpal for a week.

he is home now resting and silverchain calls to check on him.

nice to know there is people out there that cares.

Re: Only a few months

Dave_S — Thu, 07 Jun 2018 03:04:22 GMT

Jennifer people do care, have the strength to carry on. At 82 I know I am at the end of my time on earth, to have cancer return at this stage is something I never thought I could handle, but I must. My prayers go out to you and your husband and family.
From Western Australia.

Re: Only a few months

CaptainAustrali — Tue, 21 May 2019 14:56:34 GMT

I just wanted to say sorry for your situation

For him, it's awful. Not really the physical suffering - the worst part is knowing that time is short, knowing that you may soon have to say goodbye.

You face the same thing, and in a way it's worse - you have to watch it happen, and continue after he passes.

I wish and hope there is a chance for him to fight this disease and win. I was in a very similar boat 2+ years ago, but was able to beat the cancer. I hope that's a possibility for him too.

It sounds like it's going against him, I just wanted to say good luck, and sorry.

I hope he rallies and lives as long as possible, but if he does pass away, I hope you remember to ask for help for yourself. You will need help and support to deal with it, and there are resources available to you, and plenty of people here who have common experiences.

Me personally - I like to be alone with grief & fear. It's only joy and happiness that I'm interested in sharing.

BUT .. I'm an old turtle who pulls into his shell when things go wrong. You're probably not the same .. remember to reach out and seek help at all times throughout this horrible challenge you are dealing with. Prioritising and protecting your own overall mental health, I mean.

Re: Only a few months

looker_labs — Thu, 23 May 2019 10:01:18 GMT

Sometimes chemo fails.

Get radiation.

I don't know who can tell you that "the meter is running down."

Every case is different.

Did the chemo help at all?

Point being if T-cell lymphocytes or B-cell lymphocytes have shown

any improvement?

Re: Only a few months

Jenniferwang — Thu, 23 May 2019 19:52:50 GMT

Thank you for your support. My husband is still fighting this cancer. It has been tough. Been on so many chemo, radiation and trial drugs and it keeps coming back. Can't shake it. He is very emotional every day. I am too. But we still staying positive and fighting this together.

Re: Only a few months

Jenniferwang — Thu, 23 May 2019 19:56:27 GMT

Had radiation twice and it still coming back. We are at the end of radiation. If we do another round of radiation it will his last. But will have higher risk of damaging the nerve and muscle on the neck and right arm. Going to ask cancer doctor next week what other options do we have. Not going to lose without a fight.

Re: Only a few months

looker_labs — Fri, 31 May 2019 23:25:31 GMT

How many rounds of chemo?

It would be better if the radiation was interspersed with the chemo

especially if radiation is showing any improvement in t or b cells.

Typically chemo is less damaging to the tissues than radiation.

There will be some damage from agressive radiation, but this can and

should be administered in multiple locations (perhaps 5) with less

in the areas showing atrophy.

THERE IS NO REASON TO STOP AT 3 RAD. TREATMENTS

Re: Only a few months

Jenniferwang — Sun, 02 Jun 2019 01:08:56 GMT

Doctor had tried 4 different types of chemo over the past year and a half. Killed most of his cancer apart from his neck, under his armpit and in his head. Consider all chemo failed. Hence we tried radiation with immune therapy. Radiation on the neck and under his armpit. It worked for a few months but the neck came back. Had another round of radiation this january at the neck but it came back again now. Seen the radiation doctor in late may and he said if we do another round of radiation at the neck it will be his last and his risk of damaging the throat, neck muscle and nerve to his neck and right arm will be 20%. May lose his ability to turn his neck and use his right arm. We heard this we decided to put on hold and let his cancer specialists find another trial drug to test on him. We are now waiting on news.

As to why only 3 rounds is max that is what doctor said. We asked and his explanation was the tissue and nerve in that area neck is thin compared to other parts of body. Hence max is 3 rounds.

Re: Only a few months

CaptainAustrali — Sun, 02 Jun 2019 01:23:11 GMT

It's a tricky balance. I've had only 1 round of radiation for head and neck cancer, and if the cancer returned, I would (apparently) be refused more radiation.

Why ? Because the treatments are all evidence based, and they have data that continued saturation with the radiation will cross over a tipping point where rather than killing the cancer & killing you slowly, it will just kill you quickly.

Immunotherapy is a great and fascinating direction for the science, the gene & immuno stuff has the potential to make the current orthodox treatments look like ignorant torture chambers in comparison. Imagine wearing a patch over the compromised organ where a biotic gel is then released slowly into the tissue, and it genetically interferes with the cancer mutation and slowly reverses it ?

Hopefully that stuff helps your husband. But yeah, I think if a doctor refuses radiation, the only way you'd get access to continued treatment is money (bribe and blackmail) or fraud (change his name and say he's never had radiation before). If the alternative were certain death, I supppose I'd find a way to do it .. but if there were alternative treatments available, they're no doubt less dangerous (and hopefully more effective!) than continued chemoradiation.

Re: Only a few months

Mani — Fri, 02 Aug 2019 01:29:51 GMT

Hi Jennifer

I was diagnosed with Stage IV Lymphoma ten years ago. I had both Hodgkin and Non-Hodgekin, an unusual case doctors said. I had a Bon Marrow Transplant in 2012 and I have enjoed the seven years since then. Before cancer I had my own lucrative Professional Practice, but with cancer and betrayl of my business partners I had to wind that up. For about 18 months I went through deep depression. But, looking back now I have lived long enough to see my two children complete school, one is almost completing university and other in the first year.

With positve attitude and a fighting sprit one can fight the cancer and keep the death away. Now, about two months ago, I was diagnosed with Myelodysplasia (a side effect of intensive chmo I had in 2012). I am told untreated my life expectancy is 1.6 years. Treatment is highly risky.

FIGHT ON AGAIN. I WANT TO LIVE LONG ENOUGH TO SEE MY CHILDREN EMPLOYED, MARRIED AND HAVE CHILDREN.

Re: Only a few months

Kris1 — Sat, 24 Aug 2019 05:01:25 GMT

Jennifer

you are a brave lady. My husband’s diagnosis was 20 days ago. Stage 4 esophageal cancer with metastasis to liver and adrenal glands. He’s 59, never smoked and we are facing terrible odds. The big comprehensive cancer center we tried offered only palative chemo. We came back to be treated by more rural docs, but some with fighting spirit. We start Tuesday. It is so hard to see him in such discomfort and not be able to fix this. It’s so hard to know that I may not have him in 90 days. I try to stay focused and make sure I do everything I can to help him each day with research, appointments , nutrition and basic care. Doing that allows me to sleep at night. Doing everything possible and then handing the rest to God. That’s all I can offer and I’m not sure it’s gonna be enough, because I feel more abandoned by God now even though I know it’s not true, I just feel that because this seems so very unfair.

one ray of hope I’ve found is use of keytrudia in trials, super promising and worth asking about. I’m also a big believer in nutrition to starve the disease. You may not be able to kill it, but you can slow it down. Everyday you keep him here is a day closer to the promise of a cure. Your family is in my prayers

Re: Only a few months

Jenniferwang — Sat, 24 Aug 2019 09:55:45 GMT

Hi Kris1,

Sorry to hear about your husband. It is a very tough journey for love ones of a cancer patient. I always say life is unfair and also keep asking why this happen to my husband. But my friend told me, life is fair just for some it is more fair than others and things always happen for a reason just sometimes we cannot understand the reason.

2 years on and unfortunately my husband lost the battle and passed on 12th August 2019. He was only 42 years old. It was never easy dealing with this when he was fighthing for his life but it is harder now without him around. I lost my soul mate, my best freind and the love of my life.

Now it's still raw but i wake up everyday telling myself i made a promise to him and i will try to be happy after he passed. I am greatful he gave me these last 2 years to be with him and take care of him. He always try to make me smile whenever he gets the strength and he always tell me he loves me every morning and every night. I am grateful.

Please take care of yourself and all the best to you both

Re: Only a few months

Budgie — Sat, 24 Aug 2019 10:45:20 GMT

Hi Jenniferwang,

My deepest sympathies for your loss. Please don't forget that we are here for you still. Take care & look after yourself .

Budgie