› Forums › General Melanoma Community › Jake
- This topic has 48 replies, 13 voices, and was last updated 9 years, 4 months ago by
Squash.
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- February 4, 2016 at 12:01 pm
Hi my friends,
i have had a hard time getting on here since Artie. But I need a little advice. Jake has been on keytruda and a bone strengthener for almost 8 mo now. The first scan showed big improvement and the visible tumors shrank completely. Then Jake moved 15 min from home to try a light semester of college. He shared a room w his brother:) So glad he went! But next scan no shrinkage and it grew. 2 worst new mets–throat and rectum. All internal tumors remained–liver, lungs, spine, bones, sinus…he has normal side effects w white eyebrows, white side burns, some vitaligo and occasional mild rash that doesn't bother him and of course fatigue.
So…now he hasn't been out of his bed in 3 days. Today will be 4. It's been 10 days since treatment. He has severe aches and now a fever. Loss of appetite and now a little nausea. His last blood work showed his kidney numbers weren't great, liver struggling a little and tumor marker up again. Before this he has been very active. Fatigue though. He has moved back home to focus on his body. It's all he does 24/7. Sleep a lot, eat crazy healthy, try to gain weight, gym. He does nothing else and all his friends are gone. It's hard to watch.
I do all I can for him. k. Day 4 or more in bed. TIME TO SEE THE DOCTOR??? He says it feels like flu and doesn't want to go in.
Oh how I hate the decisions….so many decisions.
Thanks for getting thru the novel.
Prayers and love to you all who are in this!
Kerri–mom of Jake
- Replies
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- February 4, 2016 at 1:38 pm
Since Jake is a stage IV, have you considered using cannabis oil? You should be able to take the oil with the keytruda. It would help him with the back ache and nausea. You can read up all can about cannabis oil treatment on the internet. If you live in an area where medical marijuana is not legal you can consider just buying Hemp Oil from your health food store but it does not have the level of cannabinoids as in the cannabis oils.
I am a stage IIIB with NED, but I am on a clinical trial of IPI/NIVO so I have agreed not to take the cannabis oil while on the treatment, but I have talked to my Oncologist and told him it I move to stage IV I will be taking it. My Dr said you have to do all you can to save your life.
Also when I started my treatment I was tired a lot and slept a lot and had back pain. To fix that issue I had to get my butt out of bed and start walking 4 miles a day and I also changed my diet to no sugar and started juicing vegetables. It really boosted my fatigue and now I am not effected my by treatment. Also to help my back I changed my mattress to firmer.
I would be happy to help you on your research on this subject of you want to email me at [email protected]
You need to do all you can and try every method to help Jake.
Tom
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- February 4, 2016 at 1:38 pm
Since Jake is a stage IV, have you considered using cannabis oil? You should be able to take the oil with the keytruda. It would help him with the back ache and nausea. You can read up all can about cannabis oil treatment on the internet. If you live in an area where medical marijuana is not legal you can consider just buying Hemp Oil from your health food store but it does not have the level of cannabinoids as in the cannabis oils.
I am a stage IIIB with NED, but I am on a clinical trial of IPI/NIVO so I have agreed not to take the cannabis oil while on the treatment, but I have talked to my Oncologist and told him it I move to stage IV I will be taking it. My Dr said you have to do all you can to save your life.
Also when I started my treatment I was tired a lot and slept a lot and had back pain. To fix that issue I had to get my butt out of bed and start walking 4 miles a day and I also changed my diet to no sugar and started juicing vegetables. It really boosted my fatigue and now I am not effected my by treatment. Also to help my back I changed my mattress to firmer.
I would be happy to help you on your research on this subject of you want to email me at [email protected]
You need to do all you can and try every method to help Jake.
Tom
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- February 5, 2016 at 12:15 am
You sound like Jake!! He juices all day, very high quality supplements, we have very pure/custom made can ibis but he hates it!! Only tried it twice. He is a no sugar guy for a year. We also have a biophotrex laser which he uses a few times a week. We have a far infrared sauna he rarely uses and he goes to the gym daily. Just not now! Our onc says to come in, so tomorrow morning I will take him. He hates going!! Any other home stuff that had helped you we are interested in. We just feel we will give his body the best shot we can!!
Thanks!!
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- February 5, 2016 at 12:15 am
You sound like Jake!! He juices all day, very high quality supplements, we have very pure/custom made can ibis but he hates it!! Only tried it twice. He is a no sugar guy for a year. We also have a biophotrex laser which he uses a few times a week. We have a far infrared sauna he rarely uses and he goes to the gym daily. Just not now! Our onc says to come in, so tomorrow morning I will take him. He hates going!! Any other home stuff that had helped you we are interested in. We just feel we will give his body the best shot we can!!
Thanks!!
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- February 5, 2016 at 12:15 am
You sound like Jake!! He juices all day, very high quality supplements, we have very pure/custom made can ibis but he hates it!! Only tried it twice. He is a no sugar guy for a year. We also have a biophotrex laser which he uses a few times a week. We have a far infrared sauna he rarely uses and he goes to the gym daily. Just not now! Our onc says to come in, so tomorrow morning I will take him. He hates going!! Any other home stuff that had helped you we are interested in. We just feel we will give his body the best shot we can!!
Thanks!!
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- February 4, 2016 at 1:38 pm
Since Jake is a stage IV, have you considered using cannabis oil? You should be able to take the oil with the keytruda. It would help him with the back ache and nausea. You can read up all can about cannabis oil treatment on the internet. If you live in an area where medical marijuana is not legal you can consider just buying Hemp Oil from your health food store but it does not have the level of cannabinoids as in the cannabis oils.
I am a stage IIIB with NED, but I am on a clinical trial of IPI/NIVO so I have agreed not to take the cannabis oil while on the treatment, but I have talked to my Oncologist and told him it I move to stage IV I will be taking it. My Dr said you have to do all you can to save your life.
Also when I started my treatment I was tired a lot and slept a lot and had back pain. To fix that issue I had to get my butt out of bed and start walking 4 miles a day and I also changed my diet to no sugar and started juicing vegetables. It really boosted my fatigue and now I am not effected my by treatment. Also to help my back I changed my mattress to firmer.
I would be happy to help you on your research on this subject of you want to email me at [email protected]
You need to do all you can and try every method to help Jake.
Tom
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- February 4, 2016 at 1:46 pm
Hi there,
i do not know where to begin to give advice, am stage 4 myself and up and down. I can only send you and jake lots of prayer , love.
There is amazing guys on here with more experience than me dealing with this which will give you support.
Its also been tuff with Artie passing i felt so down too.
Prayers and love
Scooby123
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- February 4, 2016 at 1:46 pm
Hi there,
i do not know where to begin to give advice, am stage 4 myself and up and down. I can only send you and jake lots of prayer , love.
There is amazing guys on here with more experience than me dealing with this which will give you support.
Its also been tuff with Artie passing i felt so down too.
Prayers and love
Scooby123
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- February 4, 2016 at 2:27 pm
Prayers to you and Jake!! My Husband had responded the same way to Keytruda initially, and then things got bad. I know it is hard to distinquish between illness and side effects, but I would probably see the doc. What can it hurt? I would think the flu would have passed the worst part in just a few days. My husbands symptoms are very similar. He has tumors, in throat, kidney, lungs and now again in his small bowel which is causing the most pain.
Prayers to you both!! Be strong. Things can turn so quickly so I always think we should be procative and if it s the flu than at least there is piece of mind.
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- February 4, 2016 at 2:27 pm
Prayers to you and Jake!! My Husband had responded the same way to Keytruda initially, and then things got bad. I know it is hard to distinquish between illness and side effects, but I would probably see the doc. What can it hurt? I would think the flu would have passed the worst part in just a few days. My husbands symptoms are very similar. He has tumors, in throat, kidney, lungs and now again in his small bowel which is causing the most pain.
Prayers to you both!! Be strong. Things can turn so quickly so I always think we should be procative and if it s the flu than at least there is piece of mind.
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- February 4, 2016 at 2:27 pm
Prayers to you and Jake!! My Husband had responded the same way to Keytruda initially, and then things got bad. I know it is hard to distinquish between illness and side effects, but I would probably see the doc. What can it hurt? I would think the flu would have passed the worst part in just a few days. My husbands symptoms are very similar. He has tumors, in throat, kidney, lungs and now again in his small bowel which is causing the most pain.
Prayers to you both!! Be strong. Things can turn so quickly so I always think we should be procative and if it s the flu than at least there is piece of mind.
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- February 4, 2016 at 1:46 pm
Hi there,
i do not know where to begin to give advice, am stage 4 myself and up and down. I can only send you and jake lots of prayer , love.
There is amazing guys on here with more experience than me dealing with this which will give you support.
Its also been tuff with Artie passing i felt so down too.
Prayers and love
Scooby123
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- February 4, 2016 at 2:31 pm
Good Morning Kerri, I received your message this morning. I just don't know how to reply back through MPIP. Not sure if I hit reply, if it will just go to MPIP and not to you. So I thought I would just go on here first…to reply…because I know this will go through. Then I will try emailing you. 🙂
I'm so sorry Jake isn't feeling well. It is true that maybe it is just the flu. I was about 8-9 months into Keytruda and I too got the flu. It is scary because the mind goes to the bad places. But I was better a week later and so happy for that.
I just scanned and had treatment yesterday and they said my scans are perfect. I'm healthy and feeling so lucky. It's now been almost 3.5 years since I started Keytruda. And in the first 6 months on it, most of my tumors disappeared, while my worst one kept growing. It took 6 months before that bad tumor grew like crazy and then it blew up and liquified and died. Then it slowly decreased in size by about 15% every 3 months.
In the first 6 months on Keytruda I was losing lots of weight. I lost about 45 lbs. That weight stayed off for that first year. Now I've gained back about 25 lbs and I am trying like crazy to lose it again…darn it. In that first year I had fatigue and nausea and a bad burning rash on my chest. In the 2nd year I still had nausea and the rash moved from my chest to the back of my scalp. And in the 3rd year on Keytruda I am healthy and feeling great. As if I am not on any drug. I feel that I am doing so well not only because of the Keytruda, but because I have changed so many things for the healthier in my life.
I'd be happy to chat on the phone. I will try emailing you back with my number. If you don't receive an email from me…please feel free to reach out again.
As for now…try giving Jake some warm lemon water with some fresh juiced Ginger and some Cayenne Pepper to help move that flu out. Add some raw honey to that as well…so it goes down easier and the raw honey will coat his throat too, if he is coughing.
All my best, Laurie
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- February 4, 2016 at 2:31 pm
Good Morning Kerri, I received your message this morning. I just don't know how to reply back through MPIP. Not sure if I hit reply, if it will just go to MPIP and not to you. So I thought I would just go on here first…to reply…because I know this will go through. Then I will try emailing you. 🙂
I'm so sorry Jake isn't feeling well. It is true that maybe it is just the flu. I was about 8-9 months into Keytruda and I too got the flu. It is scary because the mind goes to the bad places. But I was better a week later and so happy for that.
I just scanned and had treatment yesterday and they said my scans are perfect. I'm healthy and feeling so lucky. It's now been almost 3.5 years since I started Keytruda. And in the first 6 months on it, most of my tumors disappeared, while my worst one kept growing. It took 6 months before that bad tumor grew like crazy and then it blew up and liquified and died. Then it slowly decreased in size by about 15% every 3 months.
In the first 6 months on Keytruda I was losing lots of weight. I lost about 45 lbs. That weight stayed off for that first year. Now I've gained back about 25 lbs and I am trying like crazy to lose it again…darn it. In that first year I had fatigue and nausea and a bad burning rash on my chest. In the 2nd year I still had nausea and the rash moved from my chest to the back of my scalp. And in the 3rd year on Keytruda I am healthy and feeling great. As if I am not on any drug. I feel that I am doing so well not only because of the Keytruda, but because I have changed so many things for the healthier in my life.
I'd be happy to chat on the phone. I will try emailing you back with my number. If you don't receive an email from me…please feel free to reach out again.
As for now…try giving Jake some warm lemon water with some fresh juiced Ginger and some Cayenne Pepper to help move that flu out. Add some raw honey to that as well…so it goes down easier and the raw honey will coat his throat too, if he is coughing.
All my best, Laurie
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- February 4, 2016 at 2:31 pm
Good Morning Kerri, I received your message this morning. I just don't know how to reply back through MPIP. Not sure if I hit reply, if it will just go to MPIP and not to you. So I thought I would just go on here first…to reply…because I know this will go through. Then I will try emailing you. 🙂
I'm so sorry Jake isn't feeling well. It is true that maybe it is just the flu. I was about 8-9 months into Keytruda and I too got the flu. It is scary because the mind goes to the bad places. But I was better a week later and so happy for that.
I just scanned and had treatment yesterday and they said my scans are perfect. I'm healthy and feeling so lucky. It's now been almost 3.5 years since I started Keytruda. And in the first 6 months on it, most of my tumors disappeared, while my worst one kept growing. It took 6 months before that bad tumor grew like crazy and then it blew up and liquified and died. Then it slowly decreased in size by about 15% every 3 months.
In the first 6 months on Keytruda I was losing lots of weight. I lost about 45 lbs. That weight stayed off for that first year. Now I've gained back about 25 lbs and I am trying like crazy to lose it again…darn it. In that first year I had fatigue and nausea and a bad burning rash on my chest. In the 2nd year I still had nausea and the rash moved from my chest to the back of my scalp. And in the 3rd year on Keytruda I am healthy and feeling great. As if I am not on any drug. I feel that I am doing so well not only because of the Keytruda, but because I have changed so many things for the healthier in my life.
I'd be happy to chat on the phone. I will try emailing you back with my number. If you don't receive an email from me…please feel free to reach out again.
As for now…try giving Jake some warm lemon water with some fresh juiced Ginger and some Cayenne Pepper to help move that flu out. Add some raw honey to that as well…so it goes down easier and the raw honey will coat his throat too, if he is coughing.
All my best, Laurie
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- February 4, 2016 at 4:42 pm
I would see Jake's onc asap. I understand the hesistation to change treatments (it seemed to be working early on, etc.), but given Jake's recent scans, does staying with Keytruda make sense?
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- February 5, 2016 at 12:25 am
Agreed. I have asked if we can change or add a BRAF inhibitor. He is BRAF positive and has never had anything but keytruda aside from the hellish chemo/radiation and IL-2 that did nothing but about kill him.
Not sure how long he can go w this heavy tumor load. 20 in lungs. 20 in liver. 6 in spine…next scan March 7. Then time to make a change if it's not improved.
I guess it just hit me as you said it. What the heck….get it out of him.
Thanks
kerri
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- February 5, 2016 at 12:25 am
Agreed. I have asked if we can change or add a BRAF inhibitor. He is BRAF positive and has never had anything but keytruda aside from the hellish chemo/radiation and IL-2 that did nothing but about kill him.
Not sure how long he can go w this heavy tumor load. 20 in lungs. 20 in liver. 6 in spine…next scan March 7. Then time to make a change if it's not improved.
I guess it just hit me as you said it. What the heck….get it out of him.
Thanks
kerri
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- February 5, 2016 at 12:25 am
Agreed. I have asked if we can change or add a BRAF inhibitor. He is BRAF positive and has never had anything but keytruda aside from the hellish chemo/radiation and IL-2 that did nothing but about kill him.
Not sure how long he can go w this heavy tumor load. 20 in lungs. 20 in liver. 6 in spine…next scan March 7. Then time to make a change if it's not improved.
I guess it just hit me as you said it. What the heck….get it out of him.
Thanks
kerri
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- February 5, 2016 at 2:53 pm
Hi Kerri
I am new on here so I know I do not qualify as a friend but I was wondering if I could offer a small piece of practcal help.
I am in the UK. We have some vey clear patient and carer resources here. I was wondering if this would help:
http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/pembrolizumab
Jake is in my thoughts. As are you.
I have been treated with Ipi and I probably delayed too long telling my treatment team about some side effects that crept up on me. They were just a little bit worse every day. By the time I told them my pituitary gland was permanently damaged.
I tell myself that it would have happened anyway!
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- February 5, 2016 at 2:53 pm
Hi Kerri
I am new on here so I know I do not qualify as a friend but I was wondering if I could offer a small piece of practcal help.
I am in the UK. We have some vey clear patient and carer resources here. I was wondering if this would help:
http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/pembrolizumab
Jake is in my thoughts. As are you.
I have been treated with Ipi and I probably delayed too long telling my treatment team about some side effects that crept up on me. They were just a little bit worse every day. By the time I told them my pituitary gland was permanently damaged.
I tell myself that it would have happened anyway!
-
- February 5, 2016 at 2:53 pm
Hi Kerri
I am new on here so I know I do not qualify as a friend but I was wondering if I could offer a small piece of practcal help.
I am in the UK. We have some vey clear patient and carer resources here. I was wondering if this would help:
http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/pembrolizumab
Jake is in my thoughts. As are you.
I have been treated with Ipi and I probably delayed too long telling my treatment team about some side effects that crept up on me. They were just a little bit worse every day. By the time I told them my pituitary gland was permanently damaged.
I tell myself that it would have happened anyway!
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- February 5, 2016 at 4:21 pm
Hey Kerri – I have been looking forward to seeing an update about Jake. Definately not the one I was hoping for. I don't have much advice but do know your family is in my prayers. Also, if you do decide to look further into cannabis – I have a guy on my fb that has tons of information. He has been fighting leukemia with cannabis for a while now and is doing great. Feel free to email me anytime if interested in reaching out to him – [email protected].
Misty
Stage 3A – Last dose of IPI 2/22! 🙂
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- February 5, 2016 at 4:21 pm
Hey Kerri – I have been looking forward to seeing an update about Jake. Definately not the one I was hoping for. I don't have much advice but do know your family is in my prayers. Also, if you do decide to look further into cannabis – I have a guy on my fb that has tons of information. He has been fighting leukemia with cannabis for a while now and is doing great. Feel free to email me anytime if interested in reaching out to him – [email protected].
Misty
Stage 3A – Last dose of IPI 2/22! 🙂
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- February 5, 2016 at 4:21 pm
Hey Kerri – I have been looking forward to seeing an update about Jake. Definately not the one I was hoping for. I don't have much advice but do know your family is in my prayers. Also, if you do decide to look further into cannabis – I have a guy on my fb that has tons of information. He has been fighting leukemia with cannabis for a while now and is doing great. Feel free to email me anytime if interested in reaching out to him – [email protected].
Misty
Stage 3A – Last dose of IPI 2/22! 🙂
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- February 5, 2016 at 5:29 pm
Kerri,Jake is in my prayers. Let us know any updates. Chiming in on Cannabis Oil. My SIL’s father has been using the CBD oil with great results. He had spots on his lungs that went away. Cound not handle chemo so he felt he had nothing to lose trying this. Could this work to keep Stage 3 at bay as well?
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- February 5, 2016 at 5:29 pm
Kerri,Jake is in my prayers. Let us know any updates. Chiming in on Cannabis Oil. My SIL’s father has been using the CBD oil with great results. He had spots on his lungs that went away. Cound not handle chemo so he felt he had nothing to lose trying this. Could this work to keep Stage 3 at bay as well?
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- February 5, 2016 at 5:29 pm
Kerri,Jake is in my prayers. Let us know any updates. Chiming in on Cannabis Oil. My SIL’s father has been using the CBD oil with great results. He had spots on his lungs that went away. Cound not handle chemo so he felt he had nothing to lose trying this. Could this work to keep Stage 3 at bay as well?
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- February 6, 2016 at 4:23 am
Kerri,
I am so sorry to hear about Jake…..I don't have any new insight to add, except I am praying for him, and you.
Rita
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- February 6, 2016 at 4:23 am
Kerri,
I am so sorry to hear about Jake…..I don't have any new insight to add, except I am praying for him, and you.
Rita
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- February 6, 2016 at 4:23 am
Kerri,
I am so sorry to hear about Jake…..I don't have any new insight to add, except I am praying for him, and you.
Rita
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- February 6, 2016 at 5:19 pm
Kerri,
I'm so sorry to hear about Jake. I will keep you and your family in my prayers. My only piece of advice is to get a second opinion. If I feel a doctor is not moving fast enough on treatment changes, I seek another opinion. Remember that you are hiring them and you and Jake get to make the decision on keeping a doctor or choosing another one. Melanoma is a nasty disease and I would move very fast on treatment changes when there is disease progression. I don't care for your doctor's approach to waiting until March when new scans are done to make changes. Please take care.
Maureen
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- February 6, 2016 at 5:19 pm
Kerri,
I'm so sorry to hear about Jake. I will keep you and your family in my prayers. My only piece of advice is to get a second opinion. If I feel a doctor is not moving fast enough on treatment changes, I seek another opinion. Remember that you are hiring them and you and Jake get to make the decision on keeping a doctor or choosing another one. Melanoma is a nasty disease and I would move very fast on treatment changes when there is disease progression. I don't care for your doctor's approach to waiting until March when new scans are done to make changes. Please take care.
Maureen
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- February 6, 2016 at 5:19 pm
Kerri,
I'm so sorry to hear about Jake. I will keep you and your family in my prayers. My only piece of advice is to get a second opinion. If I feel a doctor is not moving fast enough on treatment changes, I seek another opinion. Remember that you are hiring them and you and Jake get to make the decision on keeping a doctor or choosing another one. Melanoma is a nasty disease and I would move very fast on treatment changes when there is disease progression. I don't care for your doctor's approach to waiting until March when new scans are done to make changes. Please take care.
Maureen
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- February 7, 2016 at 12:02 am
Tragic for you dealing with this my heart goes out to you.
I only have one bit of advice re weight and diet.
I would try and get some really good quality pancreatic digestive enzymes and take lots of them with meals.
I would also eat plenty of good quality protein ie grass fed beef, lamb, good oils, organic eggs
Need to keep the strength up.
I dont know what other options are out there but would also like others have said maybe investigate cannabis oil.
And finally given his state of health i woudl try to avoid any really toxic treatment options.
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- February 7, 2016 at 12:02 am
Tragic for you dealing with this my heart goes out to you.
I only have one bit of advice re weight and diet.
I would try and get some really good quality pancreatic digestive enzymes and take lots of them with meals.
I would also eat plenty of good quality protein ie grass fed beef, lamb, good oils, organic eggs
Need to keep the strength up.
I dont know what other options are out there but would also like others have said maybe investigate cannabis oil.
And finally given his state of health i woudl try to avoid any really toxic treatment options.
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- February 7, 2016 at 12:02 am
Tragic for you dealing with this my heart goes out to you.
I only have one bit of advice re weight and diet.
I would try and get some really good quality pancreatic digestive enzymes and take lots of them with meals.
I would also eat plenty of good quality protein ie grass fed beef, lamb, good oils, organic eggs
Need to keep the strength up.
I dont know what other options are out there but would also like others have said maybe investigate cannabis oil.
And finally given his state of health i woudl try to avoid any really toxic treatment options.
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