Proton Beam, Cisplatin, and Spindle Cells: A Treatment Diary

JAL23

Hi all,

Boy, it's been a bit of journey since my last forum post. I am happy to say I am now 1 week into treatment, and finally feeling well enough to post and update. Here's a quick recap of my story for those of you who haven't read the previous posts:

29yo; Feb of 2017 I had an extremely small superficial SCC lesion removed from the right side of my tongue - Stage 1. At the time, I was told this was all I would need (no rads, chemo, or neck dissection) along with careful monitoring. About a month ago Oct 2017, I noticed an extremely painful lump on the right side of my neck. Despite being on a course of antibiotics and steroids, it kept getting bigger and bigger. a CT scan two weeks out showed the lump was about 3.5cm and despite the fact that a biopsy came back negative, the decision was made to schedule surgery. The week between the CT scan and the surgery resulted in a 7.5cm mass in my neck along with two additional lymph nodes involved (both of these nodes had no capsular involvement). I lost my jugular, about 20% of my neck muscle, and my hypoglossal nerve which has paralyzed the right side of my tongue. Pathology showed that the tumor had spindle cell features, which apparently is both very rare and locally aggressive. After interviewing a number of oncologists in the NJ/NY area, we settled on Dr. Nancy Lee of Sloan Kettering due to her specialization in proton beam therapy and her experience in treating this type of cancer.

So, here's the update: after spending a wonderful Thanksgiving weekend with my wife and mother, I was mentally preparing myself for treatment. I was due to start treatment on the 4th, but had to be hospitalized due to extreme pain on the 29th. This was such an extreme pain, my whole body was convulsing and shaking. IV morphine alleviated the pain, but a subsequent CT scan showed a regrowth of a mass in my neck. Needless to say my oncologists became extremely worried, and ordered a followup CT/PET at memorial sloan manhattan the next day. The PET showed some local activity (thankfully no distant metastasis!) but two needle biopsies showed no cancerous cells. My Dr.s agreed that a definitive diagnosis at this point would not be helpful, as the regrowth was right where the radiation/chemo would be treating - Assume the worst and hope for the best. Needless to say, this experience scared the hell out of me and I am praying to be cured of this aggressive cancer. I was prescribed oxycodone, and the belief is that the new regrowth is pushing up against nerves in my neck.

I wanted to create a new thread, as I would also like to give a weekly update on how treatment is going. Hopefully this might help some people going through a similar experience, or at least highlight my experience as one possible outcome for treatment. Personally, it's also helpful for me to frame how treatment is going by writing it down.

Two things I think I have in my corner as an advantage - first, I am younger at 29. This is a double edged sword, because I know that if I survive this, I will be facing a lot of long term side effects, such as trismus and lymphedema. However, I think my age and general health profile (no serious issues, no cavities, no liver or kidney problems, etc.) will hopefully work to my advantage. I also like to believe (maybe I'm kidding myself!) that I have a high threshold for pain and can take a bit of a beating from the radiation chemo.

The second thing I think is going to work in my favor is the fact that I am receiving proton beam therapy instead of traditional IMRT. The research seems to be ongoing whether proton beam actually reduces side effects compared to IMRT, but in theory that's just what it is supposed to do. Proton beam therapy can control for depth, and drastically reduces the amount of scatter seen in IMRT therapy. While the jury is out on this from the medical research side of things, I am crossing my fingers that proton beam is the best choice moving forward. Clinical research is even suggesting that protons are so precise, that people who have been previously radiated with IMRT could possibly be reradiated with limited damage. That all sounds really promising to me! The only downside is that I am receiving quite a bit of radiation to my right throat, my tongue, and a lower dose to my left side, so the radiation field is wide.

The cisplatin scares the living heck out of me, and is another story entirely. Unfortunately, my med onc also used my age as a reason to do the full three doses of cisplatin, rather than any of the other platinum based chemos. He said it's the most effective chemo, and that if you can take all three doses, it considerably improves the possibility of cure. Apparently younger patients typically do better with the full three doses, with the exception of nausea. He also said the chemo would make the radiation much more powerful and destructive to the tissues being exposed. Kidney failure, hearing loss, and nerve pain going into my third decade of life doesn't sound so great, but it beats the alternative.

Anyway, those are my thoughts going into treatment. Below, I will try to post weekly updates about how everything is going. Fingers crossed that this knocks the cancer out and I look somewhat normal on the other side. Please keep me in your thoughts and prayers.

Week 1

Boy, the chemo absolutely wrecked me. Far more than I was anticipating. I did not throw up at all, but the nausea has been consistent, and intense. This is despite two followup days after chemo with IV fluids and steroids, and an entire cabinet of anti nausea medicine. I can't imagine what it was like to take cisplatin before these medications. The other bizarre (maybe not?) side effect was that I felt like I was in a thick fog for about 4-5 days. I am not sure if this was the chemo or the anti-nausea medications though. I would randomly fall asleep, and was barely coherent intermittently. This significantly reduced after day 5. No hearing issues yet and no nerve pain, although I am not sure this would be anticipated at this point. I am dreading the second infusion, because I hear that cisplatin is cumulative in nature, and this was already pretty bad. My stomach feels like it's spinning in circles, and I fluctuate between cramps, diarrhea, and constipation every 10 minutes.

As far as radiation goes, nothing too bad just yet. I have noticed that my neck feels a little stiff, and that my saliva is getting a little thicker. I wake up with a slightly dry mouth, but it is very manageable at this point. Nothing I would describe as pain. Actually, one of the more interesting turn of events is that the pain I was feeling when I was hospitalized has completely gone away after about 5 rad treatments. Because of this, I was able to get off of the oxycodone I had been prescribed. Could it be that the chemo/rads are already working? I am hesitant to agree with this so soon, but it certainly is wonderful to feel that pain go away.

The one noticeable side effect that I cannot necessarily pinpoint on either chemo or rads is that my taste is all messed up. Meat tastes like metal, salt isn't salty anymore, and food is just generally disappointing. Sweet tastes alright, but is very dull. This makes eating rather difficult, but I've been forcing myself to go through the motions. Scrambled eggs (not overcooked with plenty of butter) have a similar flavor, as well as mac n cheese. White breads are also helpful even if the taste isn't really there. For now, swallowing hasn't become much of an issue, so for a few days my wife has picked up some excellent bagel sandwiches for breakfast. If you are ever in NJ, do yourself a favor and get a pork roll, egg, and cheese on a bagel - it's quite good! I concede that it will eventually get to a point where I won't be able to swallow something like this, but in the meantime, I will eat what I can get down. Everything gets backed with a protein boosting drink and plenty of water.

Overall, so far everything has been manageable, but the chemo in particular has been a raging unpleasant experience. I know it's going to get far worse before it gets better, so I am bracing for the foot to drop in the next few weeks.

Week 2

Week 2 has taken some twists and turns. First, on Tuesday I had followup bloodwork with my medical oncologist. It turns out the cisplatin had raised my creatinine levels. They were at the upper threshold of normal, which my Dr. thinks is entirely reversable before the second dose of cisplatin. Unfortunately for me, this means that the entire week was spent receiving 2 liters of IV hydration a day to flush my kidneys. This really was an awful experience, because I don't have great veins and usually require multiple sticks to get the vein correctly. I swore to my Dr. that I was drinking about 5-6 bottles of water a day, but he seemed to think that I was still dehydrated. We'll see what my bloodwork winds up as next Tuesday, but if the creatinine is still high, they are going to IV hydrate me right into Christmas.

I feel like the cisplatin has left my system for the most part. I feel much more alert and awake than last week. Feeling better from the cisplatin has made me dread the second infusion that much more. The second infusion is on December 26th, so a late Christmas present for me.

The rads have considerably tightened up my neck and throat. Nothing I would describe as pain just yet. My saliva has been reduced, but it is still bearable at this point. My whole mouth has turned a white sickly color, my gums are a little sore, and my tongue hurts when I am doing my prescribed stretches.

Finally, activities that would have been simple prior to treatment leave me exhausted. We had a friend come over for a few hours, and after he left I had to lie down and nap for a bit. Cleaning around the house, going for walks, and even getting some work done on my computer all have a similar effect. It's not debilitating, but it is certainly noticable. I just listen to my body when it is saying to sleep.

Overall, week 2 certainly is ramping up, but I am still doing ok and I am able to eat, swallow, and drink without pain. I think I have more fear about what this is going to be like by week 4 or 5, and so that uncertainty of waiting to see where the shoe is going to drop is making me anxious. 

johnsonbl

Good luck...

It will get much worse before it gets better...but yes, being young is a blessing...  Throw everything at it that you can handle.

The taste thing does suck...its amazing how we take that for granted until our ability to taste is gone...  It is a huge mental thing.  But eat for eatings sake...it will come back.

Everyone here will be rooting for you.  Glad you're in good hands @ MSK.  Brandon

MitchellM

Good Luck

I’ve followed your story pretty closely and am so happy to see that you finally found a treatment plan and group of doctors that seem to be in your corner. You’ve also taken a **** situation and hit it in stride. I wish nothing but the best for you and hope it come out of this with great strength and become a long-tenured professor. Good luck bud, we’re all rooting for you. 

lorijeannj

7 weeks

Hi JAL.  My husband finished 11/9/17 cisplatin (3 treatments)/radiation(35 - IMRT) and he is twcice your age.  he had no surgery.  Tumor right side 5.1 cm BOT/SCC HPV+ and left and right nodes.

Midway an MRI was performed w and w/o contrast.  It showed lymph nodes had cleared and tumor had shrunk.  He tongue was huge, I mean huge pre-treatment.  So much so he needed a PEG and I heard talk of a trach.  Trach never happened.  They refitted mask around his nose so he could breath lying down.

Cisplatin kicked him 3 days following treatment.  Sleep, sleep and sleep.  Lots of hiccups (from steroids we are told).  Some nausea.  But that's about it with chemo.  Radiation on the other hand caused some really thick mucus.  He never used magic mouthwash.  Just some oxy, tylenol, and gabapentn.  It has since subsided and he does have some mucous left to eat with.  Not totally gone.  No burns on neck.  Some hair loss (very minimal).  All in all looking at him you would never know what he went through.  And not like you, he is 61.

Just had a follow-up (scope) at Jefferson and Dr. said no evidence of tumor.  PET scan in February.  My husband felt a load of crap unload from him and is now getting into routine of eating again.  Taste is there except for sweet.  Waiting for that to be back.  Working on removing PEG, first week in January.  

I know everyone is different, but he did it twice your age so hang in there.  7 weeks, now you are down to 6.

Thanks for sharing and best of luck to you.  Believe and will happen.

 

JAL23

johnsonbl said:

Good luck...

It will get much worse before it gets better...but yes, being young is a blessing...  Throw everything at it that you can handle.

The taste thing does suck...its amazing how we take that for granted until our ability to taste is gone...  It is a huge mental thing.  But eat for eatings sake...it will come back.

Everyone here will be rooting for you.  Glad you're in good hands @ MSK.  Brandon

Hi Brandon,

Hi Brandon,

That's the plan! My oncologist described cisplatin as "the most toxic thing we have for this" so really this is the kitchen sink at this point. I am just grateful at this point I can still swallow. I am more than happy to eat my soups, breads, veggies, and meats while imagining their taste for now. One day at a time.

John

JAL23

MitchellM said:

Good Luck

I’ve followed your story pretty closely and am so happy to see that you finally found a treatment plan and group of doctors that seem to be in your corner. You’ve also taken a **** situation and hit it in stride. I wish nothing but the best for you and hope it come out of this with great strength and become a long-tenured professor. Good luck bud, we’re all rooting for you. 

Hi Mitchell,

Hi Mitchell,

I am not going to lie - I've cried, gotten upset, angry, etc. Sometimes I feel like I am doing the opposite of hitting it in stride. Sometimes I sulk and feel broken beyond the point of repair. My strength comes from the fact that my wife still needs me, my family still needs me, and my job still needs me. I have to do this for them.

I appreciate the good thoughts, and I do hope to become an old tenured professor long into the future. Thank you.

John

JAL23

lorijeannj said:

7 weeks

Hi JAL.  My husband finished 11/9/17 cisplatin (3 treatments)/radiation(35 - IMRT) and he is twcice your age.  he had no surgery.  Tumor right side 5.1 cm BOT/SCC HPV+ and left and right nodes.

Midway an MRI was performed w and w/o contrast.  It showed lymph nodes had cleared and tumor had shrunk.  He tongue was huge, I mean huge pre-treatment.  So much so he needed a PEG and I heard talk of a trach.  Trach never happened.  They refitted mask around his nose so he could breath lying down.

Cisplatin kicked him 3 days following treatment.  Sleep, sleep and sleep.  Lots of hiccups (from steroids we are told).  Some nausea.  But that's about it with chemo.  Radiation on the other hand caused some really thick mucus.  He never used magic mouthwash.  Just some oxy, tylenol, and gabapentn.  It has since subsided and he does have some mucous left to eat with.  Not totally gone.  No burns on neck.  Some hair loss (very minimal).  All in all looking at him you would never know what he went through.  And not like you, he is 61.

Just had a follow-up (scope) at Jefferson and Dr. said no evidence of tumor.  PET scan in February.  My husband felt a load of crap unload from him and is now getting into routine of eating again.  Taste is there except for sweet.  Waiting for that to be back.  Working on removing PEG, first week in January.  

I know everyone is different, but he did it twice your age so hang in there.  7 weeks, now you are down to 6.

Thanks for sharing and best of luck to you.  Believe and will happen.

 

Hi lorijean,

Hi lorijean,

Thanks for sharing your husband's story. I noticed you mentioned gabapentin - my pain dr. recommended the same thing. No idea if it is working yet, but I guess a good pain management drug does just that!

Your husband sounds very much like a success story, so I hope to be there soon. Thank you.

John

JAL23

Week 2 has taken some twists

Week 2 has taken some twists and turns. First, on Tuesday I had followup bloodwork with my medical oncologist. It turns out the cisplatin had raised my creatinine levels. They were at the upper threshold of normal, which my Dr. thinks is entirely reversable before the second dose of cisplatin. Unfortunately for me, this means that the entire week was spent receiving 2 liters of IV hydration a day to flush my kidneys. This really was an awful experience, because I don't have great veins and usually require multiple sticks to get the vein correctly. I swore to my Dr. that I was drinking about 5-6 bottles of water a day, but he seemed to think that I was still dehydrated. We'll see what my bloodwork winds up as next Tuesday, but if the creatinine is still high, they are going to IV hydrate me right into Christmas.

I feel like the cisplatin has left my system for the most part. I feel much more alert and awake than last week. Feeling better from the cisplatin has made me dread the second infusion that much more. The second infusion is on December 26th, so a late Christmas present for me.

The rads have considerably tightened up my neck and throat. Nothing I would describe as pain just yet. My saliva has been reduced, but it is still bearable at this point. My whole mouth has turned a white sickly color, my gums are a little sore, and my tongue hurts when I am doing my prescribed stretches.

Finally, activities that would have been simple prior to treatment leave me exhausted. We had a friend come over for a few hours, and after he left I had to lie down and nap for a bit. Cleaning around the house, going for walks, and even getting some work done on my computer all have a similar effect. It's not debilitating, but it is certainly noticable. I just listen to my body when it is saying to sleep.

Overall, week 2 certainly is ramping up, but I am still doing ok and I am able to eat, swallow, and drink without pain. I think I have more fear about what this is going to be like by week 4 or 5, and so that uncertainty of waiting to see where the shoe is going to drop is making me anxious.

Curlyn

Hi John, It's week 5 for me,

Hi John, It's week 5 for me, NG tube out, and I can now swallow without aspirating. Yay! All week my taste (which disappeared early in radiation and chemo) has been improving. I swallowed a chocolate bar today and small pieces of meat, mashed veggies. The swelling under my chin is improving and I am feeling better. You are your your own best advocate and it sounds like you have covered your bases with questions. So many things in your favour. You are in my thoughts and prayers.

JAL23

Curlyn said:

Hi John, It's week 5 for me,

Hi John, It's week 5 for me, NG tube out, and I can now swallow without aspirating. Yay! All week my taste (which disappeared early in radiation and chemo) has been improving. I swallowed a chocolate bar today and small pieces of meat, mashed veggies. The swelling under my chin is improving and I am feeling better. You are your your own best advocate and it sounds like you have covered your bases with questions. So many things in your favour. You are in my thoughts and prayers.

Hi Curlyn,

Hi Curlyn,

Glad to hear you are improving - can’t wait to be five weeks out too! We are keeping our fingers crossed for the best. Thank you for keeping me in your prayers.

John

Dean54

Thought I would mention scopolamine

This med worked great for my nausea from the cisplatin compared to all the other stuff they gave me and made my 3rd dose so much easier. I'm right behind Curlyn in my recovery but unfortunately I still have my PEG tube which I never use and still can't really eat to speak of.

I would actually feel pretty good if weren't for getting off the pain meds. Seems like they prescibed dose after after dose and like the dummy that I am, I drank that stuff way more than I needed and am now paying for it. I have been thru withdrawls for sevreal days and they are worse than the treatments were.

 

Good luck JAL23 and keep us informed how you are doing.

JAL23

Oh no... Week three slammed

Oh no... Week three slammed in hard. My tongue is RAW and burning. The back of my throat is a shade of red I’ve never seen it. My whole mouth and throat feels like someone lit a match in the bottom of my throat and it just keeps burning. Ouch. The only thing that cuts the pain a little is some oxy, which I really hate taking.

Food burns with an unfathomable intensity. Things with even the tiniest citrus or acid is like walking on a minefield. I’ve become quite fearful of foods and much prefer sticking to things I know. Chicken soup is inoffensive, boiled carrots have a mild flavor to them, and eggs remain a mainstay of my diet. Milkshakes and premiere shakes also help supplement calories.

My second cisplatin infusion is the 26th (Merry Christmas!) and I am dreading it more and more as each day passes. I don’t want to feel like I did on week 1. Writing this out is making me sweat a bit.

Plunging forward as this too shall pass.

JAL23

Dean54 said:

Thought I would mention scopolamine

This med worked great for my nausea from the cisplatin compared to all the other stuff they gave me and made my 3rd dose so much easier. I'm right behind Curlyn in my recovery but unfortunately I still have my PEG tube which I never use and still can't really eat to speak of.

I would actually feel pretty good if weren't for getting off the pain meds. Seems like they prescibed dose after after dose and like the dummy that I am, I drank that stuff way more than I needed and am now paying for it. I have been thru withdrawls for sevreal days and they are worse than the treatments were.

 

Good luck JAL23 and keep us informed how you are doing.

Hi Dean,

Hi Dean,

Thanks for letting me know. I’ll bring the drug up to my oncologist. He prescribed about 3 different anti nausea meds, so I might even already be taking it! I didn’t have too much nausea after my first dose, but I can feel it’s going to be rough for the second and third.

regarding the pain meds, I have an unlimited supply of oxy and have been offered patches if I need them. My body tends to handle pain meds very poorly, so I’ve been trying to resist as much as possible. Unfortunately, it seems like this week is requiring more pain meds than the previous two.

John

Curlyn

Hang in there, Jal23. Somehow

Hang in there, Jal23. Somehow extensive pre-surgery, when needed, just seems to make everything more miserable. Take your meds as needed, I was told that this is no time to hold back on them. It won't last forever. Your doc might actually want to hold off on the next Cisplatin when he/she examines you. Is weekly half dose of Cisplatin with fluids an option (what I did)? Just know that others have done it, you will, too. You need to get through it and you are halfway there. At this point I took every lifeline offered and hope you do, too.

JAL23

Week 4... I thought I was

Week 4... I thought I was strong. I thought I had a tough constitution. Week 4 has left me feeling completely broken. It took me and threw me around and broke me pretty bad.

The cisplatin infusion at the beginning of the week felt just like I had anticipated it, except now, coupled with the radiation fatigue, I feel like I’m in bed all of the time. I can feel my muscles weakening and all of my strength exiting my arms and legs. My ears are ringing loud and clear, which hasnt been fun. Praying that it reduces a bit.

Radiation is destroying all of the tissue in my mouth and throat. I found out a couple of days ago that the official dose to my entire tongue (front and back) is 60 gy. No joke. Sensitive areas around my lips, side of tongue, and gums feel like they have been shredded with a cheese grater. Food has lost all taste whatsoever, so now everything tastes like varying degrees of chalk and goop. Every time I eat I get the feeling like I just ate a mouthful of Crisco. Nutrition has become a great challenge and not gagging on food has become a hurdle.

Sometimes I wake up and for a few seconds in the morning it feels like everything is normal. I smile at the idea of running downstairs with my dog, hugging my wife, and doing whatever people our age are supposed to do on a brisk December weekend. It only takes a few seconds for that feeling to be replaced with all of this pain and fear and paranoia. My Dr.s are wrong and aren’t really trying to cure me, I’m falling and no one is trying to catch me, I’m being over treated, it won’t ever get better, etc.

I want to curl up with a big bowl of spaghetti and meatballs, and from my perspective it seems like that will 100% never happen again.

JAL23

Curlyn said:

Hang in there, Jal23. Somehow

Hang in there, Jal23. Somehow extensive pre-surgery, when needed, just seems to make everything more miserable. Take your meds as needed, I was told that this is no time to hold back on them. It won't last forever. Your doc might actually want to hold off on the next Cisplatin when he/she examines you. Is weekly half dose of Cisplatin with fluids an option (what I did)? Just know that others have done it, you will, too. You need to get through it and you are halfway there. At this point I took every lifeline offered and hope you do, too.

Hi Curlyn,

Hi Curlyn,

i did bring up the weekly cisplatin option to my onc, and he cited some studies which have shown the three mega doses to have more efficacy? Either way, he said my blood tests are fine and within normal ranges, so whatever I am feeling isn’t a dose limiting side effect, even if to me it feels that way.

ive been getting daily hydration 2 liter bags because after both infusions my creatinine shot up to about 1.1-1.2. Regardless of how much I drink the IV hydration is the only thing that gets it back down.

im taking all of the lifelines I can get this week. Thank you for the encouragement.

Dean54

Jal23, I totally understand

Jal23, I totally understand what you are going thru only my mouth and throat feels pretty much normal except for the "cotton ball in the throat" effect and can't eat solids.

I was told last week it would probably be closer to 6 months before I could enjoy food again even tho I have tried the "ninja" thing and gagged down some soup. Can't say it was worth it and will go back to the Ensures and Liquid Hopes as nasty as they are.

Last night was a nitemare as I started New Years a little early and drank beer. It DID relieve the depression for a while but NOT worth how I feel today.

JAL23

Dean54 said:

Jal23, I totally understand

Jal23, I totally understand what you are going thru only my mouth and throat feels pretty much normal except for the "cotton ball in the throat" effect and can't eat solids.

I was told last week it would probably be closer to 6 months before I could enjoy food again even tho I have tried the "ninja" thing and gagged down some soup. Can't say it was worth it and will go back to the Ensures and Liquid Hopes as nasty as they are.

Last night was a nitemare as I started New Years a little early and drank beer. It DID relieve the depression for a while but NOT worth how I feel today.

Hey Dean,

Hey Dean,

Happy New Year! I could really go for a beer right about now too.

We ordered boost VHC off of Amazon thinking it’d be a lifeline. Whatever is in there (I’m thinking the corn syrup) comes through loud and clear taste wise. Unfortunately, that clear taste is exactly what I would imagine cow dung would taste like. So there goes that...

Back on ensure as well, which is far less offensive.

Flyinhigh

A couple suggestions

First my prayers for you.  You must perservere.  You will get there, even though the journey is brutal.  GNC has a product called 1340.  If you can handle 1 scoop mixed with 16 oz whole milk it will be close to 1000 calories.  I dreaded breakfast, lunch and dinner but virtually chugged three of these per day for 3000 calories and 120 grams protein for about seven weeks. I also had the 3 mega doses of Cisplatin with metal taste, fatigue, nausea.  My experience was same as yours with each dose harder than previous. Also what helped me tremendously was Cannibus.  It helped relieve the nausea and pain relief.  Don’t know what state you are in, but where there is a will there is a way.  Good luck we are pulling for you.

JAL23

Flyinhigh said:

A couple suggestions

First my prayers for you.  You must perservere.  You will get there, even though the journey is brutal.  GNC has a product called 1340.  If you can handle 1 scoop mixed with 16 oz whole milk it will be close to 1000 calories.  I dreaded breakfast, lunch and dinner but virtually chugged three of these per day for 3000 calories and 120 grams protein for about seven weeks. I also had the 3 mega doses of Cisplatin with metal taste, fatigue, nausea.  My experience was same as yours with each dose harder than previous. Also what helped me tremendously was Cannibus.  It helped relieve the nausea and pain relief.  Don’t know what state you are in, but where there is a will there is a way.  Good luck we are pulling for you.

Hi Flyinhigh,

Hi Flyinhigh,

There’s a GNC store right down the street from us, so I’ll be stopping by tomorrow to check out 1340. Thank you! I’ll respond with an update once we pick it up. It sounds too good to be true, much like the boost VHC. I can stomach milk, so hopefully it doesn’t add too much extra.

New Jersey is such a strange state when it comes to medical marijuana. We offer it, but you have to jump through so many hoops to get it. For example, in NJ you must have a “terminal” condition (strangely Stage IV HN qualifies for this despite curative intent), have been seen by a qualified certified marijuana Dr. for at least two years, and then your papers go up before some sort of board for approval. By the time we would finish this process I’d already be done with treatment (albeit flying high afterwards!) we were shocked when one of the on call oncs stopped into our treatment room, and we asked about medical marijuana, and he basically said to find a friend who could supply some. None of the MSK doctor’s are certified in NJ to write the rx. Who knows, now with Chris Christie out of office, there’s rumblings the new governer might just legalize it altogether.

JAL23

Flyinhigh said:

A couple suggestions

First my prayers for you.  You must perservere.  You will get there, even though the journey is brutal.  GNC has a product called 1340.  If you can handle 1 scoop mixed with 16 oz whole milk it will be close to 1000 calories.  I dreaded breakfast, lunch and dinner but virtually chugged three of these per day for 3000 calories and 120 grams protein for about seven weeks. I also had the 3 mega doses of Cisplatin with metal taste, fatigue, nausea.  My experience was same as yours with each dose harder than previous. Also what helped me tremendously was Cannibus.  It helped relieve the nausea and pain relief.  Don’t know what state you are in, but where there is a will there is a way.  Good luck we are pulling for you.

As an update, we went to GNC

As an update, we went to GNC and picked up the vanilla and chocolate flavored 1340. Chugged a whole milk chocolate 1340 smoothie and it went down acceptably. I haven’t felt this satiated in a while. What a lifeline! Thank you!!