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#188394 02-23-2015 10:40 PM
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Hello All,

I've searched the topic Alcohol in the search bar but didn't get s clear enough answer, so I would like to hear your current opinions please. I'm a 22 yr old Male which used to drink about 5-6 times a month (pre-Cancer).. I've asked my ENT and RO and both of them said it is OK to drink on 'special occasions', I mentioned if twice a month is overdrinking as an OC patient and they said that's a little more strict than they would recommend haha. I have 6 weddings coming up this year and I'm also going on Vacation to Cancun. Do you feel that it would be okay to have 3-4 cups of liquor about 4 times a month on average? I know it would be safer to be a teetotaler but I'm too young to not enjoy myself with celebratory drinks! Also I'll be on vacation for 6 nights and 7 days. Can I make it an exception to drink everyday for 6 straight days (note: I'm not an alcoholic) and will be sipping on Liquor. Please tell me what you think.

Something a little more off topic and many may not know about it since it's a fairly knew source of medicating . A couple friends of mine are bud tenders and they've been suggesting that I ingest a Cannabis Extract filled Capsule with either CO2 oil or Rick Simpson Oil. They claim that it will help with side effects such as an Appetite Booster, a Sleep Aid and helps with overall Mood. If I swallow a capsule that has this extract and nothing touches my Oral Cavity, would you consider it safe to ingest in your books?

I know many are dealing with much bigger issues but any experiences and knowledge on these topics would make me a happy camper. Thanks All and have a blessed day!


Male, 23 year old�Dx 6/17/14 with SCC R Lateral tongue
CT scan clear lymph nodes 6/20/14
HPV-, form-smoker, casual drinker
Right Hemiglossectomy Surgery 6/24/14
(Not reccurrence but went to NCCC instead)
Right neck diss., trach, radial free flap, right tongue diss. surg 8/11/14
PT1N2B..3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) and Cisplatin (2x) begun
10-21-14 peg in. 11-4-14 IMRT rx comp. 1-9-15 peg out
3-27-15 Recurrent tumor in lymph node, Left neck diss.
10-29-15 passed away
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We do have several threads with varying viewpoints on weather its ok to drink after OC. If I have time later I will look them up and add them to this post.

There is a big difference between beer and hard liquor. since you are only a few months post rads I would be surprised if your mouth was able to tolerate the hard stuff. I was a couple years post rads and took a sip of a pina colada and almost hit the ceiling the rum burned so much. Personally Ive never been much of a drinker so social drinking isnt a big deal to me.

There is a major difference in what you drink. From what I remember of our last threads, wine is the least detrimental, beer is second and the hard liquor (like rum, vodka, bourbon, etc) is the most damaging to sensitive mouth tissue. Even many mouthwashes are high in alcohol and should be avoided being used on a daily basis. Over the years Ive had the pleasure of meeting many OC survivors, many of them enjoy an occasional glass of wine or a beer but they draw the line at the hard stuff. How often is an occasional drink? Its one glass of wine or beer once or twice a month.

For these questions you should also consult your doctor at your next check up. They will know (hopefully) the latest studies about the risks of drinking after OC.

These link may also be helpful. They are from the main OCF pages...

Alcohol as a Cause (main OCF pages)

The Alcohol Connection (main OCF pages)












Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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My belief is if you have to worry something you are doing caused your cancer, you should not do it unless you want to worry. One oncologist told me, if drinking caused your cancer, don't drink, as he chuckled and reminded me unless it is known to be from HPV, smoking and drinking for years is the most likely cause.

As far as your other, in your state, you should be able to try such things, if you wish to deal with pain or increase appetite.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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Hi Brandon, congrats on getting through what I'm sure was a very tough treatment. You're a champ!

I struggled with the alcohol question too, and I drank quite a bit more than you did - every night, a couple of glasses of wine or beer, here and there a hard drink. I particularly loved wine and had a small collection.

When I finished treatment my RO told me this: you can have a glass of champagne on your birthday or New Year's, but otherwise don't drink. I'd also consulted an MO of course early on; he was a wine drinker himself and seemed to think it was ok in moderation.

I decided to be cautious. It was a tough decision to make. I really love good wine especially. And a cold beer on a hot day (of which we have a great many here in Los Angeles) was something I practically considered a god-given right!

I do appreciate that you're a young man with what I trust will be a long life ahead of you. I was 55 when diagnosed and I'm 61 now. I haven't had a drop of alcohol in more than 4 years. For the first year or so post-treatement I had that one glass. Then it became unimportant. By now I have no interest.

So on the one hand we have you - a guy who's barely started in on life and who, facing the prospect of not being able to enjoy the occasional drink with friends ever again, finds that prospect scary. I agree. But on the other hand there's me, someone who spent virtually all of his adult life drinking every day and who was suddenly at a relatively advanced age advised not to do it anymore. Which is tougher? A good question!

My RO is very smart and I trust her completely. Every bit of advice she gave me was excellent. So I decided that I preferred breathing to drinking.

As to your other question, I say go for it. My state also permits medical marijuana and I've been using it sparingly for the last nearly a year. It helps me sleep mainly, but I'm sure depending on strain could also help you with appetite. I don't know about those oils, I mainly make myself crackers with peanut butter. In the beginning I tried a vaporizer, reasoning that it wasn't smoke I was taking into my lungs. This may well be true, but I personally found it unpleasant. So I use only edibles. You can grind them or soak them in water if it helps.

Please keep us posted on your progress. All of this stuff is of course only one person's opinion!

All the best to you.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Posts: 5,260
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Do you know what caused your cancer? Those with HPV related cancers do know. Those who have drunk and smoked for years - have a good idea. If you are young, and have doubts as to the cause I would say that maybe... because you don't want to face a recurrence, and at this point it would likely be highly painful, or irritating to your mouth... it would be a good idea to refrain. I am not a drinker - at all - I don't understand the need to drink to have a good time. Never have. However, I get that a lot of people feel that way. I think in some cases it's all about perspective. What is more important, living? or drinking? I know it's not that you want to drink all the time, but sometimes what starts off as one becomes more over time.
Bottom line. Think of what you went through and ask yourself... DO I WANT TO GO THROUGH THIS AGAIN?

I just read that you had three nodes involved.

Were I you - I'd take NO chances. Hugs. and best of luck.



Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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[quote]What is more important, living? or drinking?[/quote]As far as I know the most commonly agreed behavior is to not heavily drink and smoke. There are a number of studies that seem to imply doing both increases the chance of getting cancer. Kind of like stating the obvious.

On the other hand, it does not seem that drinking in moderation increases recurrence among HPV survivors.

No smoking for sure in any form. I prefer quality of life so I'm fine with a bit of drink. I honestly do not feel I am adding risk by any amount more than all the others things I do that put me in more harms way than a few drinks.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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By the sounds of it this young man's cancer is non HPV. This is why I said what I did. Hugs... and best of luck.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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His sig does explicity say HPV- so I'm with Cheryl on this, Don. The risk for me would be too high and each year that passes is additional risk. Is drinking more important than trying to extend life? That would be the personal question one would have to ask, and then live with worry whether it was safe with each drink.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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A bit over a year out from TX I had a really good dark beer and man was it yummy! Since then, I've enjoyed couple now and again while watching the game or with a meal. My team sees no harm and actually mentioned the benefits.

Mind you, I can't tolerate wine anymore nor will I partake in hard libations (EX Whiskey Lover). At going on two years and another NED report, my team says it's safe to say if something is going to take me out, it won't be the original cancer. Heck, I smoked, drank and carried on and while it most certainly was a contributing factor in my cancer, my team believes it was the HPV that got me.

It's a personal choice and one should be informed before making a decision. As for me? I keep some cold ones in the fridge wink

Positive thoughts and prayers

"T"

Last edited by fishmanpa; 02-26-2015 04:59 PM.

57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
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Ah, if HPV -, then the question was there a history of heavy drink/smoking. There is pretty common agreement that this combo can be pretty unkind to some. If that were the case then I would not imbibe except for special occasions.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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I am a year out and also a beer lover. I do indulge every now and then (two beers max). I drink the NA stuff when I want a cold one on a hot day or after work. They have quality NA brews that are very tasty. I enjoy the fact I won't pay for the five na beers I drink the next day. I say drink sparingly and find an alternative if your really wanting to hit the bars with friends.

Cheers,

Fish


SCC front left lateral tongue T2N0M0 After neck dissection. partial glossectomy 12/26/13. Perinueral Invasion. IMRT 60gy 30 treatments beginning 2/5/14 through 3/19/14.
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As a long-time beer lover, I continued to enjoy my beer after I was declared cancer-free the first time. Except for a bout of lung cancer along the way, I remained cancer free for many years until my next occurrence and was a regular drinker during that time. Then a weird thing happened.

Before my biopsy last January, the ENT told me I'd have a sore throat for a few days afterward. Sure enough, he was right and for several days I ate a rather bland diet, no hot or spicy foods and no alcohol. As I recall, I was drinking mostly milk. The following Sunday was the Super Bowl and I was enjoying the game. My throat was feeling better and I thought a good beer sure would taste good right now. I had one sip and it was the worst taste I ever had in my mouth. So I spit it out and opened another beer. Same result. These beers were from the same six-pack I had been drinking from four or five days earlier.

That was the last time I had any beer and right now I have no plans to drink any more. So I've been on both sides of the fence, both drinking and not drinking after OC. As far as I'm concerned, it's a personal choice each person should make after considering all the facts and circumstances related to their situation.

If you decide to drink, then please drink responsibly and enjoy yourself. If you decide not to drink, I hope you also enjoy yourself.

As Fish said, Cheers!


Andrew
4x survivor
1998 - SCC of larynx
...laryngectomy, tracheotomy, radiation, caries, HBO, teeth extr, TEP
2002 - lung cancer, wedge resection
2014 - SCC of BOT, pharynx, oropharynx, HPV-, stage IV, T2N0MX, invasive, poorly differentiated
...chemo (carboplatin, taxol), dc'd due to neuropathy
2015 - SCC of palate
...Feb-April IMRT (46 x 70 Gy)
...Jan 2015 - May 2016 cetuximab 500 mg q week x 55wks
2016 - metastases to mediastinum, lungs, spleen, pancreas
...Aug-? pembrolizumab q 3 wks
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After my treatment ended 9 years ago, I was told not to drink alcohol. I have since been told that moderate beer and wine is ok. My RA told me that he hasn't seen moderate drinking leading to re-occurrences in his practice.
Rob


6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
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I enjoyed a few N/A's every now and then after my first bout. When I experienced recurrence in late '06 I gave it all up and never looked back. Not sure there is any correlation but I just decided it was the right thing for me. Of course after my second fight and having radiation and chemo I couldn't handle anything with any type of carbonation or odd flavors/tastes, so not sure how beer would even work for me(And I still can't handle anything but coffee and water very well). Not to say a cold beer every now and then still doesn't sound good. Best wishes to those that do, and Enjoy!


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

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Thank you all for your personal opinions, and that of your doctors as well. The definition of a 'moderate drinker' is 3-4 cups a day and no more than 12-14 drinks per week. Any drinking over that one week duration is considered alcoholic. Hmm I wonder if this doesn't pertain to OC patients. Anyways My ENT told me drinking 3-4 times a month is just right where he would cut it if he were in my position, and he said to drink every other day on vacation. He said it doesn't matter the amount that I intake on those days, but I'm planning on around 2-3 cups a night and maybe a couple brews during the day.

The 7 weddings I go to this year (2 of which are my siblings') will all be drinking nights and maybe a drinking night every other week with friends. All your opinions were appreciated and my final judgement is to enjoy life and let the good times roll with a little cheers, while leaving the rest to the man upstairs!



Male, 23 year old�Dx 6/17/14 with SCC R Lateral tongue
CT scan clear lymph nodes 6/20/14
HPV-, form-smoker, casual drinker
Right Hemiglossectomy Surgery 6/24/14
(Not reccurrence but went to NCCC instead)
Right neck diss., trach, radial free flap, right tongue diss. surg 8/11/14
PT1N2B..3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) and Cisplatin (2x) begun
10-21-14 peg in. 11-4-14 IMRT rx comp. 1-9-15 peg out
3-27-15 Recurrent tumor in lymph node, Left neck diss.
10-29-15 passed away
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It's a slippery slope... wink

Last edited by Cheryld; 03-03-2015 08:48 AM.

Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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[quote=Cheryld]It's a slippery slope... wink [/quote]

Agreed, Cheryl. That's why I thought it safer to quit entirely. I haven't regretted the decision even one minute. (still hoping the OP will re-consider)


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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I know I am coming into this conversation a little late, but I wanted to comment on your second question, if it is too late to be useful for you it may be useful for someone else. Since your treatments are done I know that I have found using medical cannibis to be helpful when I lived where it was legal. If in treatments (and even out) I would definitely speak with your doctor before using it. Without the government allowing any medical testing of it, there is not a ton of data on the safety of it and the available data is sometimes questionable (look at who is funding the research to make your own opinion). One study shows CBD (the non-THC component in cannibis) has been shown to stop tumor growth. CBD is also a great pain reliever without intoxicating you. You can get strains that have high CBD levels or a CBD extract/oil.

I think the biggest issue with medical cannibis is that there isn't a lot of regulation as to how it is grown. A lot of grower's tend to use harmful chemicals, which pretty much goes against it being a healthy alternative. Even some organic products are worse than the inorganic ones so just buying organically grown varieties isn't always the best option. I lived where I was able to grow and so I preferred to grow my own. This let me be fully organic and research each product I used to make sure it didn't have any heavy metals in it and to see how it was derived. Also I knew of any problems with my plants (at dispensaries you may end up with a plant that had mold on it, which is not healthy to injest or smoke - they can treat it and make it unnoticeable but traces are still there). So in my opinion in general medical cannibis is a good option and I had great results with no known side effects. However, poor regulations (just like with our other groceries and medicines) and the lack of inspections of growing operations means that you aren't always sure of what you are getting unless you can do it yourself, so there is always the chance of unknown side effects. We buy medicines and foods made in known to be clean environments, but if the cannibis is grown by individual grower's who sell to the dispensary, then we don't know what the conditions were like or what products they used. I have seen some pretty bad operations that just weren't very clean. I have to say I am in support of medical cannibis, but the system needs an overhaul to protect the consumers.

I prefer non-smoking methods such as edibles, ointments, tinctures, and oils. If you are having trouble sleeping then an indica would be helpful. If you are having trouble with appetite then sativa's help. You can alternate using these so that you are taking them when you need to sleep or eat - and mixing them together can also have a middle of the road effect. The tenders at the dispensary are very helpful and can help you pick out the strains/products that match your needs, this can be best as sometimes your preferred strains aren't available and new ones are. If you aren't smoking then figuring out the dosage can be trickier, just be wary of the level of each "dose" as what the dispensary claims is one dose may be too strong for you so start off small. I was simply wanting to medicate and not be completely out of it so I found making my own edibles to be the best option. That way I had full control over the dosage amount and you can make them into any type of food that requires butter or oil so you aren't just limited to junk food. Another option is to make non-alcohol tinctures.

As for your first question, even though I am HPV positive I prefer to not take a chance with drinking anymore. I've sipped my husbands wine and liquor and they don't even taste good to me anymore. I have a career where most of us are good drinkers and so it can be a pain at conferences and all, but I have a great excuse and still have a great time hanging out with everyone. I've also gotten creative at how to order non-alcoholic drinks so I can at least look like I am joining in.

These are just my opinions and I felt compelled to share since I gather that most people on the forum don't have as much firsthand experience with your second question. Hope this helps and best to you!


Female, Age 38, healthy non-smoker, rarely drank, regularly workout
May 2014 noticed irritation on tongue
6/18 saw doctor
6/25 saw ENT specialist got biopsy
6/30 Dx HPV P16+ ve SCC tongue cancer
7/9 CT scans, no visible spread
8/20 partial glossectomy with radial forearm flap, neck dissection 26 nodes sampled - results T2 N0 with mild dysplasia
4/2015 start to have ear pain
5/2015 recurrence
6/4/2015 surgery 29 nodes samples pN 2c
7/13/2015 7 wks of Chemo & Radiation start

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My ENT has stated NO Drinking any alcohol period, he states that to all his patients no matter the cause. I was a lite drinker before this WAR and have not had a drop in 9 years. I believe that it is better to be safe thrn sorry!!! Just my advice. Semper-Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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