Simulation and Cannibis

My simulaton was today and I survived.  My daughter drove me (she is 9 months pregnant) and gave me a lorazepam just prior to and also held my hand.  The mask was surprisingly comforting.  It did feel warm like a facial and I didn't mind it at all.  As soon as they put it over my face she immediately pulled on it in the nose area to lift it up off of my nose.  Thank God my mucous stayed at bay and I didn't even have to swallow, just flare my nostrils a bit and relax.  My markings were made and they took my picture, then it was all over.

The oncologist has ordered 7 weeks of radiation with 7 weeks of chemo with the chemo once a week on Monday's, cisplatan.  All of this begins October 8th.  He talked about the "spillage" again and said he would be radiating all of the area on my neck really hard including the skin.  So my skin is going to take quite a beating and will probably be hard and stiff forever. That's ok, kill the cancer. No mention of a peg tube.  Except to say that I'm younger so I might not need one.  He said 1 in 4 need one.  We shall see about that, I'm already beat up from surgery...

I'm going to spend the next 5 days with my daughter in hopes of meeting the new grand baby and we're going to get the garlic planted and the rest of the garden put to bed for the year.

So this is my update, so far so good.  Now what I want to know is if anyone uses medical cannibis?  I've done lot's of research.  MI is a state where it is legal.  I have never used cannibis but have read so many good things about it with cancer patients.  Some go so far as to say it has cured their cancer.  I'm thinking of using the oil that you swallow like an elixir.  I can even grow up to 12 plants of my own legally.  Gardening is my passion and all of the video's I watched about growing this got me real interested again in doing something.  I've been so depressed that nothing interests me. 

So I have a couple weeks of relaxation and gearing up for my big fight.  

Bring it on...

Shell

PS NO support group to be found in lower western MI (Paw Paw, Kalamazoo area) except for a prostate group.  I might start on, it is so needed!

 

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    See? :)

    it felt like a facial to me too...

    Everybody's radiation is hard on the skin....gotta get through it, to get to those pesky cancer cells.....I wouldn't worry too much about stiff skin.....the muscles can get harder and stiffer.....I didn't notice it so much at first but am beginning to feel stiffer on the side that got the most rads.  As for the PEG, you might not need it.....I got all through rads and chemo without using it.....it wasn't until I started the adjuvent chemo after rads were done, that I was SO glad to have it.  So good, a wait and see on that.

    I thought about canibus during treatment, but then remembered I wasn't too crazy about it when I was young....so decided against it....I sure don't see anything wrong with giving it a try.....or growing it for a hobby....LOL...

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    shell, i'm so glad it went

    shell, i'm so glad it went well.  you have a plan now you can get busy with it.  i am praying the grandchild comes while you are there.  how exciting!!  gives you something extra to fight for.  you will have to let us know when he/she arrives!  wishing you the very best as you go thru tx.  praying it is smooth and without any complications.  keep us posted on your progress.

    God bless you,

    dj

  • Sonja.K
    Sonja.K Member Posts: 79 Member
    Starting Together

    I started to read your postings because it seems like our journeys are starting together.  I start six weeks of radiation on 10/6.  You have such a great attitude,  I admire that. I was going in between ignoring my diagnosis and being angry about it.  I came across this website a few days ago and have been reading it word for word.  People are so strong and helpful, its inspiring.   It had also helped me to face my diagnosis, start learning about it and treatments and move forward.  I'd be very curious to see what you learn about medical marijuana.  It is not legal in my state.  Take care and I look forward to hearing your experiences. 

     

  • Laralyn
    Laralyn Member Posts: 532
    Hey there! Glad the

    Hey there! Glad the simulation went well! It helps to know what it's like--and I took Lorazepam too. :-)

    I live in California and used medical marijuana too. It helped with the nausea until I had a different issue making me sick (rare reaction to the narcotics--nothing for you to worry about). I had a wide variety of types. The pills worked best until my throat got really sore, and then I switched to the oil. 

    They gave me a specific cream to use on my skin at the hospital. Even though I have really fair skin, I didn't burn much at all and I don't have hard skin on my neck now. It's called Medline Remedy Skin Repair Cream with Olivamine. You can order it on Amazon too if they don't have it at the hospital. It worked so well that I ordered some later for dry skin!

    Hope this helps, and hang in there! Soon you'll be done with treatments and back on the road to the rest of your life!

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Shell

    To me there is a growing need for natural meds that can help with the healing process when we get sick. I don’t know about Marijuana curing anything but it does have some very good qualities that can help, but be careful of low blood pressure problems.  I would love to see it giving a different name because the stigma of when you say the word Marijuana people automatically think you are a druggy.  On another note just wish you well and hope the grandbaby comes before you start your treatment. I have 6 of them so far and just enjoy being able to hold them and play there games and be a part of there lives.

    Tim Hondo

  • phrannie51
    phrannie51 Member Posts: 4,716
    I was already in bed when

    I thought of this...

    When you see your Oncologist again, ask about Emend as an anti-nausea drug....along with the others that they seem to give (Zophran being the main one).  A few of us here got Emend, and it saved me from being sick sick.....It's only given for the first three days after chemo.  I used to think the anti-nausea part of the drug scheme was pretty common among Onc's.....but it seems that Emend isn't always given until someone is so sick they can't keep anything down.   Or.....maybe it was because that those of us who did get it got the large doses of Cisplatin every 3 weeks rather than a weekly dose.  Either way, keep Emend in your list of "go-to's" in case nausea becomes a problem.

    p

  • Bart T
    Bart T Member Posts: 62 Member
    TRY THE POT

    As to pot – try it. If it works use it, and if not don’t. I’ve spoken to many people who have had relief from their cancers and/or treatment from pot. I tried it and found it to be of little use for me, but everyone has their own experiences with it. I found I didn’t like it for the same reason I don’t use it when I’m healthy – it makes me paranoid. But again, that’s just my personal experience, and everyone’s experience is personal to themselves. I’ve never heard from a cancer user who complained it made them worse. In fact since it wasn’t working for me, I gave mine to a very conservative elderly man I used to meet in the waiting room for our radiation sessions. He raved about how great it worked for him. 

    As to the form, because I had tongue cancer, and the radiation made my mouth and throat very irritated, any form of smoking was out of the question, so look for an ingestible variety. I’m from New York where it is not legal, so I went to California. At the dispensary, they were unbelievably knowledgeable about the various varieties of pot and their effects they hooked me up with pot in the form of tea, oil, honey sticks (should be a favorite for oral patients since the honey was somewhat soothing in the mouth), lollipops, chocolate and pop candies. 

    I think California is way ahead of any other state in terms of the ease of getting the pot and the variety of forms in which it is sold. (although the whole medical thing in CA is a farce – but that’s a whole different and complex topic). I’d post a picture of how the stuff looks in ingestible form, but I don’t know how to do that. I did however do a little slideshow for my friends which includes a picture of the pot and is posted on youtube at https://www.youtube.com/watch?v=UYAQrAbAhUw. If you skip to about the 4 minute mark in the slideshow, you’ll be able to see a picture in the forms I mentioned.

     If you’re in the mood for a little vacation, a trip to someplace like Venice Beach, CA might be a good use of your time, but it sounds like your vacation will be spent awaiting grandchild. A little vacation and “me” time just before the start of the treatment is probably a good idea for anyone, as you’re likely to feel pretty crappy after the first couple weeks of radiations. Good luck with everything, including the new grandchild.

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    THC is simply a chemical compound

    as is everything else thaaat is used to treat medical problems of any sort.  It just has the distinction  of being in this controversial place because of its recreactional use.   Your post doesn't say exactly what symptoms you are considering using it for, and I personally feel that's the rub here.  It works well for some things, not so well for others, and for recreational use, well, whatever....

     

    best to you

     

    Pat

  • Shell_7801
    Shell_7801 Member Posts: 71

    THC is simply a chemical compound

    as is everything else thaaat is used to treat medical problems of any sort.  It just has the distinction  of being in this controversial place because of its recreactional use.   Your post doesn't say exactly what symptoms you are considering using it for, and I personally feel that's the rub here.  It works well for some things, not so well for others, and for recreational use, well, whatever....

     

    best to you

     

    Pat

    Thank you again

    Again, thank you all for the responses.  As for the cannibis I have read that it combats nausea, improves appetite and mood, and relieves pain.  I like that it is natural.  I've never smoked it recreationally as I have never used narcotics recreationally either and they are the prescribed "norm" for this disease and have deadlier outcomes when used recreationally than cannibis does.  I'd like to take a more natural approach to my treatment and recovery. I'm told the nerve damage to my arm could be permanent leaving me with chronic pain. When I get a caregiver and get some of the oil I will surely let you know how it works for me.  Remember thankfully this is a legal alternative in my state.  

    Smile

  • KB56
    KB56 Member Posts: 318 Member

    Thank you again

    Again, thank you all for the responses.  As for the cannibis I have read that it combats nausea, improves appetite and mood, and relieves pain.  I like that it is natural.  I've never smoked it recreationally as I have never used narcotics recreationally either and they are the prescribed "norm" for this disease and have deadlier outcomes when used recreationally than cannibis does.  I'd like to take a more natural approach to my treatment and recovery. I'm told the nerve damage to my arm could be permanent leaving me with chronic pain. When I get a caregiver and get some of the oil I will surely let you know how it works for me.  Remember thankfully this is a legal alternative in my state.  

    Smile

    Your arm

    Shell, I'm amazed the the potency of drugs that they will give us if we ask, but cannibis (in most states) is not an option at all.  If it helps get through this at all, or if you even think it helps, why not.  They were going to give me some pain meds via a patch that they would have to "wean me off of" but I asked my oncologist about marinol (thc based that is supposed to stimulate appetite) and dismissed it and said he didn't think it would help.  even if I thought it would he should have given it a try.   I hope it works for you for whatever symptom you are trying to treat. Personally I wouldn't hesitate to try it to see if it helped.  

    as far as the nerve damage in your arm, I have some as well and I went to a neurologist to get it checked out.  Mine was due to the radiation damage to the Long Thorasic Nerve and it controls the serratis (sp?) anterior muscle.   the reason I mention it is that I have been doing exercises on my own that have really helped.   I have much more mobility now that I did a few months ago so hopefully your nerve damage will improve as well once you start some therapy.  I know you have a lot on your plate now with just getting ready to start your treatment but there are some really easy things to do that might help your shoulder.  

    Good luck as you start the next phase of this trip.  You seem like you have the right attitude going in and that is so important.   You 'll have some ups and downs but in 7 weeks this will be behind you and you can start healing again.

     

    All the best,

    Keith

     

  • Duggie88
    Duggie88 Member Posts: 760 Member
    Hi Shell

    A new face welcome to our little club. I haven't been around for a while, my job doesn't always cooperate with my personal lifet.

    I would consider the pot more of a recreation or buffer thing more so than part of the treatment. I tried it once back in the seventies .OK the one time lasted quite a few years. I use to say I came up with some of my best ideas when I was high.

    I had 30 treatments and also feared mucous issues but got through the ordeal no problem. They use to play cd's for me and I also use to think about the grandkids during the daily routine. Sounds like you will have a new one to take your mind off  the tratments. You will be ringing the bell before ya know it. Stay hydrated and kick some a--

    Life is good

          Jeff

  • donfoo
    donfoo Member Posts: 1,771 Member
    MMJ options

    Glad to hear you are in a progressive state and feel positive about more natural methods of treating symtoms.. Not sure what the specifics are in your state but here are options.

    MMJ does not cure cancer or anything. It relieves various symtoms of differnt medical problems. In the case of oral cancer, the primary benefits are being able to relieve pain, relieve anxiety and stress, and improve sleep.

    Forms to get THC into your system are basically inhale or ingest.

    Inhaling via smoking the herb gets into the system right away. It is the most common method but for oral cancer patients, it may irritate your throat. A better option is to inhale the vaporized smoke. There are vaporizers that heat the herb to just the point of releasing the THC but not buring the vegetable material where all the harshess comes from.

    There are standalone vaporizers such as the Volcano and hand held models. The Volcano is the BMW and it is proven to be the most effective at eliminating all the harshness. The hand held units vary and require some learning to get the settings right for you. They are small and discrete and portable so more practical in many cases. 

    Ingesting THC comes in the form of edibles, pills/capsules, and oils. Ingesting takes much longer for the THC to get into your system. It is not unusal for this time to be an hour or two. Brownies and cookies and candy bars are common forms of edibles. The pills/capsules/oils are just different forms to get it into your stomach. THC is also added to various spreads and all sorts of food products. The key factor of all injestibles is to know the amount of THC you are dosing.

    Topicals and ointments generally are used to relieve local pain. For SCC patients, this is probably the least recommended method of dosing.

    THC is a one of many chemicals in cannibus. Some give you a high, others relieve pain, etc. CDB is known for offering pain relief and no high. Ask at the dispensary what the composition is for the varieties. It is much better to find dispensaries that test their product. It is not just for determining strength but also mold content and other pesticides etc.

    Two primary strains are Indica and Sativa. Each has different properties. Provide the type of symptoms you want relief for and they can direct you to the product that helps the most.

    Gtood luck.

     

    Feel free to PM if you want more info

  • Guzzle
    Guzzle Member Posts: 710
    donfoo said:

    MMJ options

    Glad to hear you are in a progressive state and feel positive about more natural methods of treating symtoms.. Not sure what the specifics are in your state but here are options.

    MMJ does not cure cancer or anything. It relieves various symtoms of differnt medical problems. In the case of oral cancer, the primary benefits are being able to relieve pain, relieve anxiety and stress, and improve sleep.

    Forms to get THC into your system are basically inhale or ingest.

    Inhaling via smoking the herb gets into the system right away. It is the most common method but for oral cancer patients, it may irritate your throat. A better option is to inhale the vaporized smoke. There are vaporizers that heat the herb to just the point of releasing the THC but not buring the vegetable material where all the harshess comes from.

    There are standalone vaporizers such as the Volcano and hand held models. The Volcano is the BMW and it is proven to be the most effective at eliminating all the harshness. The hand held units vary and require some learning to get the settings right for you. They are small and discrete and portable so more practical in many cases. 

    Ingesting THC comes in the form of edibles, pills/capsules, and oils. Ingesting takes much longer for the THC to get into your system. It is not unusal for this time to be an hour or two. Brownies and cookies and candy bars are common forms of edibles. The pills/capsules/oils are just different forms to get it into your stomach. THC is also added to various spreads and all sorts of food products. The key factor of all injestibles is to know the amount of THC you are dosing.

    Topicals and ointments generally are used to relieve local pain. For SCC patients, this is probably the least recommended method of dosing.

    THC is a one of many chemicals in cannibus. Some give you a high, others relieve pain, etc. CDB is known for offering pain relief and no high. Ask at the dispensary what the composition is for the varieties. It is much better to find dispensaries that test their product. It is not just for determining strength but also mold content and other pesticides etc.

    Two primary strains are Indica and Sativa. Each has different properties. Provide the type of symptoms you want relief for and they can direct you to the product that helps the most.

    Gtood luck.

     

    Feel free to PM if you want more info

    Expert

    Don knows his stuff! No legal Cannabis in UK apart from very exceptional prescription but a lot of people use it unofficially for relief. The Californian way seems more progressive. Did you stop easily when need for relief stopped? Could this be a bridge to recreational use? Whatever works is good. I do know that the strains over here are increasingly strong in THC etc and heavy recreational use has been linked to mental illness. IM for responsible medical use. G.

  • ErthWlkr
    ErthWlkr Member Posts: 60
    Gettng high and getting by :) ...

    Hi Shell:

    To your original post - I'd ask again about the PEG tube. You've writtent that the doc has ordered the heavy artillery to be fired into your neck area which is going to have a great inflammatory effect on your throat and mouth. I had a PEG tube installed just prior to beginning my rads for sinus cancer and one suspicious node in my neck. I resisted the idea at first but glad that I decided to go with it - by the third week of rads I couldn't swallow any solids at all and just went downhill from there. Some have gotten thru treatment without the PEG but it takes a lot of work and dedication.

    There's also a PEG-type "button" - much shorter, less obstrusive, and easier to take care of.

    As far as cannabis, it's another option - which is what we're always looking for. The FDA is looking at an oral medication that is cannabis based. It's altered so that you just get the pain relief benefits without the high. But it's still a fight on the social and cultural fronts - the Woodstock generation did some heavy branding work on marijuana that's difficult to overcome. :)

    As far as support groups, it might not be a bad idea to start one. What I would also suggest is that you contact SPOHNC (Support for People with Oral Head and Neck Cancer - www.SPOHNC.org). They're a national group with over 125 chapters across the US and they can help you with the idea. They also have a matchup/buddy system where they'll take your info about diagnosis and treatment and match you up with another survivor that can guide you along treatment and recovery thru both phone contact and email. Full disclosure - I'm a group facilitator out on Long Island and see how effective first hand patient-to-patient communication can be.

    Take it a day at a time for now. Work it thru and get to recovery. Stay with us - there's a lot of good guidance, advice, wisdom, and tactics to be found here.

    Onward we all go!

    - Jeff

  • donfoo
    donfoo Member Posts: 1,771 Member
    Guzzle said:

    Expert

    Don knows his stuff! No legal Cannabis in UK apart from very exceptional prescription but a lot of people use it unofficially for relief. The Californian way seems more progressive. Did you stop easily when need for relief stopped? Could this be a bridge to recreational use? Whatever works is good. I do know that the strains over here are increasingly strong in THC etc and heavy recreational use has been linked to mental illness. IM for responsible medical use. G.

    UK legal

    This is the stuff Gary is referring to that is legal in the UK and a few other countries (not USA).

    http://www.gwpharm.com/Sativex.aspx

    Just how truely insane the USA law is that cannabis is classified as a Schedule 1 drug which makes it outlawed for any use, even approved research and trials. Even if you are against it for general use, at least support an initiative to reclassify it off the Schedule 1 list so valid research and trials can be conducted legally.

  • Shell_7801
    Shell_7801 Member Posts: 71
    ErthWlkr said:

    Gettng high and getting by :) ...

    Hi Shell:

    To your original post - I'd ask again about the PEG tube. You've writtent that the doc has ordered the heavy artillery to be fired into your neck area which is going to have a great inflammatory effect on your throat and mouth. I had a PEG tube installed just prior to beginning my rads for sinus cancer and one suspicious node in my neck. I resisted the idea at first but glad that I decided to go with it - by the third week of rads I couldn't swallow any solids at all and just went downhill from there. Some have gotten thru treatment without the PEG but it takes a lot of work and dedication.

    There's also a PEG-type "button" - much shorter, less obstrusive, and easier to take care of.

    As far as cannabis, it's another option - which is what we're always looking for. The FDA is looking at an oral medication that is cannabis based. It's altered so that you just get the pain relief benefits without the high. But it's still a fight on the social and cultural fronts - the Woodstock generation did some heavy branding work on marijuana that's difficult to overcome. :)

    As far as support groups, it might not be a bad idea to start one. What I would also suggest is that you contact SPOHNC (Support for People with Oral Head and Neck Cancer - www.SPOHNC.org). They're a national group with over 125 chapters across the US and they can help you with the idea. They also have a matchup/buddy system where they'll take your info about diagnosis and treatment and match you up with another survivor that can guide you along treatment and recovery thru both phone contact and email. Full disclosure - I'm a group facilitator out on Long Island and see how effective first hand patient-to-patient communication can be.

    Take it a day at a time for now. Work it thru and get to recovery. Stay with us - there's a lot of good guidance, advice, wisdom, and tactics to be found here.

    Onward we all go!

    - Jeff

    The Garden and Go Fish

    I spent the last 2 days with my 5-year-old grandson and we worked in the garden and played Go Fish (card game) non-stop. 

    So far this has been the most theraputic for me. The garden got my body moving and the card game kept me laughing.

    I forgot that I have cancer.

    Thank you all for being here when I come back to reality.  

    Shell

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member

    The Garden and Go Fish

    I spent the last 2 days with my 5-year-old grandson and we worked in the garden and played Go Fish (card game) non-stop. 

    So far this has been the most theraputic for me. The garden got my body moving and the card game kept me laughing.

    I forgot that I have cancer.

    Thank you all for being here when I come back to reality.  

    Shell

    shell, that is awesome!!! 

    shell, that is awesome!!!  i'm so glad you mind let you forget for a while and have fun, laugh, work in the garden and enjoy your grandson!!  now that's showing cancer who the BOSS is!!!

    God bless you,

    dj

  • granmudder
    granmudder Member Posts: 41 Member

    The Garden and Go Fish

    I spent the last 2 days with my 5-year-old grandson and we worked in the garden and played Go Fish (card game) non-stop. 

    So far this has been the most theraputic for me. The garden got my body moving and the card game kept me laughing.

    I forgot that I have cancer.

    Thank you all for being here when I come back to reality.  

    Shell

    Grandchildren & Gardening...

    I must admit Shell that this is also the most thereaputic for both myself and my hubby seeing our grandaughter and laughing /playing with her is the best ... yard work is also a great way to get some exercise and its so rewarding .. ..... He sees his radiologist  Tuesday morning i cant tell you how much He has improved since the end of treatment on august 20th the first 3-4 weeks were hard really hard but its getting easier.. as for pot he was mentioned by a few nurses to think about it.. to stimulate his appetite..he tried i even tried baking some cookies for him but he couldnt really swallow them so they ended up in the garbage.. what we are focusing on now is a february vacation .. he wants to be well enough to enjoy the food :0 the beach and eachother...one day at a time and a positive attitude and your grandson and the new baby coming !!! all exciting things to focus on... hang in .

  • hwt
    hwt Member Posts: 2,328 Member

    The Garden and Go Fish

    I spent the last 2 days with my 5-year-old grandson and we worked in the garden and played Go Fish (card game) non-stop. 

    So far this has been the most theraputic for me. The garden got my body moving and the card game kept me laughing.

    I forgot that I have cancer.

    Thank you all for being here when I come back to reality.  

    Shell

    She'll

    I had rads and Cisplatin but we are all different. Whatever anti nausea pills they gave me worked perfectly. I was given vanicream for my neck. I did not use it faithfully. After tx stopped my neck turned dark brown and peeled but never hurt or broke open. Lip sores were my menace. I did have a g tube. 3 years later, neck muscles tighten but neck skin ok. Following surgery, I could not raise my arm to wash hair. Abit a physical therapy and I had good range of motion. My advice,be aware of options but take it as it comes and deal with it. 

    best of luck