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

JAL23

So a couple of quick updates

So a couple of quick updates for week 5.

First, my wife and I have been calling week 5 the week of patience. I realized with all of the pain and changes occurring to me, I could either freak out, become miserable and depressed, and make this the worst couple of weeks ever.... or, I could just reframe my situation as something I just have to wait out. I am going to be in pain for a while... My throat is going to feel tight for a while... it’s going to be difficult to drink water for a while... It’s going to be no fun eating for a long time. I think these mental barriers were getting the best of me, and the cycle between my treatment and my perception was preventing me from getting through this. I needed patience, so that‘s what I’ve been trying to get all week. Of course, this wouldn’t have been possible if it weren’t for the next point...

I was starving. I don’t mean complaining that I was a little hungry starving - I was quite literally starving. I remember at the beginning of the week sitting at the kitchen table with a bowl of soup (at max 150 cals) and an ensure (about 120 cals) and crying because I could not get the food down, and it’d take about 16-17 ensures just to meet my daily calorie minimum (about 2,500 - 3,000 calories a day). We had tried last week the Boost VHC, which was a complete failure as it had a gaggy taste and texture. Earlier in the week Flyinhigh mentioned a product called GNC 1340 that he had good luck with. I was skeptical, but I went down to my local GNC and bought a big bag of the chocolate flavored one. Lo and behold, it worked!! It had no off putting taste, mixed well with whole milk, and allowed me to only drink 2-3 shakes a day to hit what I needed. Wow, what a difference!

Immediately after upping my calories, the next day I felt awesome. I still had some mouth sores, but I was talking, I had my energy back, and I felt coherent. I knew my nutritionalist said that food is extremely important during treatment, but I didn’t realize the level of that importance until I stopped being able to eat enough. I can’t stress this enough - you HAVE TO get calories down some way. I couldn’t heal without food, and that crappy feeling made it even harder to eat food. What a vicious cycle. I could easily imagine the reason some people have such a hard time during treatment is that they stop eating and don’t have a PEG to fall back on. I know I was scared when the boost VHC didn’t work. Eat, Eat, Eat!!! Thank you Flyinhigh!

I feel like I’ve recovered from the Cisplatin fairly well at this point. I am feeling nautious from the radiation a bit. Unfortunately, my creatinine took a hit, and is sitting around 1.2, implying my kidneys are no longer running at full capacity. I have yet to hear whether this will change the third does next week, but it sounds like they are going to plow ahead with it despite the less than ideal number. My ears are also ringing loudly, to which my onc shrugged his shoulders and said you’ll likely have that forever.

I have what Dr. Lee is calling an early response PET scan on the 19th, which will determine if she is going to (her words) “super dose“ me. I am not sure if that means going from 60 gy to 70 gy? Either way, the scan will determine if there is anything left that is suspicious that would require additional radiation. Given the last two holiday weeks plus a snow day last Thursday, that means my radiation will be going into an 8th week at best, and who knows how long if Dr. Lee decides to “super dose.” Maybe another week? I feel confident in my Dr.s, but a lot of uncertainty and anxiety about whether or not this is going to work. Some days I feel like throwing in the towel and others I feel more up to the fight.

lorijeannj

Thank you for sharing.

Thank you for sharing.

Dean54

Hang in there Jal23 and I

Hang in there Jal23 and I fully understand about the ups and downs as I still struggle with that and I'm almost a couple of months past treatment. Few things I'll mention from my point of view.

The ear ringing will get better, at least it did for me and is pratically no worse now than what it was before I started. 

Be careful with the high protein powders/drinks as too much protein is hard on your kidneys and we already know the Chemo has messed them up even more.

Watch your intake of pain meds and don't get hooked like I did. Getting off them was/is harder than the treatments itself. Also watch taking any Ibuprofen as it can compromise your kidneys also, that's why I took too much narcotic.

Good luck brother and you'll get there, we're thinking of you.

grace2017

Just ahead of you

My husband is just a little ahead of you and he is fighting right along with you.  Some days are better than others - today wasn't a great one, but hopefully tomorrow will be better.  The whole thing is just really tough, anyway you look at it.  Hopefully you and I can come back in another month and give some good tips and good news about being on the other side of treatment.  Please know you are not alone!  Hang in there!

JAL23

grace2017 said:

Just ahead of you

My husband is just a little ahead of you and he is fighting right along with you.  Some days are better than others - today wasn't a great one, but hopefully tomorrow will be better.  The whole thing is just really tough, anyway you look at it.  Hopefully you and I can come back in another month and give some good tips and good news about being on the other side of treatment.  Please know you are not alone!  Hang in there!

Hi Grace!

Hi Grace!

i saw your other post. Thank you for the kind words, and I’ll be rooting for your husband from here in NJ! Looking forward to ditching treatment in the past with all of that good news. Best of luck in finishing up treatment!

John

JAL23

Dean54 said:

Hang in there Jal23 and I

Hang in there Jal23 and I fully understand about the ups and downs as I still struggle with that and I'm almost a couple of months past treatment. Few things I'll mention from my point of view.

The ear ringing will get better, at least it did for me and is pratically no worse now than what it was before I started. 

Be careful with the high protein powders/drinks as too much protein is hard on your kidneys and we already know the Chemo has messed them up even more.

Watch your intake of pain meds and don't get hooked like I did. Getting off them was/is harder than the treatments itself. Also watch taking any Ibuprofen as it can compromise your kidneys also, that's why I took too much narcotic.

Good luck brother and you'll get there, we're thinking of you.

Thanks Dean. The good

Thanks Dean. The good thoughts are appreciated and certainly help me get through each week. I hope you are at least starting to adjust to normal life again!

Glad To hear about the ear ringing. That’s a rough one to be dealing with - particularly with sleeping. I expect it’ll get worse with the third dose, but fingers crossed it’ll improve like for you.

I was initially avoiding protein powders for just that reason. My nutritionist even said to avoid them because of the kidney effect. The 1340 is only 50g of protein for the full two scoops, and is really a high carbohydrate dense shake. 225g of carbs to be exact. It’s amazing how helpful those nutrient macros are for people in our situation. GNC doesn’t sponsee me, but I feel like they should at this point!

I took your advice about the pain meds to heart - I’ve been very careful about taking the oxycodone. Some days I need them, and others I need a break. The Ativan has been a regular because of its anti nausea properties, so I’ll have to wean off of that at some point. Gabapentin is extremely effective and luckily is non habit forming. I was told no tylonel or ibuprofen due to the cisplatin and my neck surgery.

JAL23

Week 6, holy moly. I never

Week 6, holy moly. I never thought I‘d get here. There is a small light at the end of the tunnel (just hope I’m not going towards THE light lol). Week 7 will be my last full week for treatment, with the caveat of the boost doses I mentioned last week.

First things first, I am shuddering in a corner in anticipation of Tuesday. I cannot stress enough the horrific nature of high dose Cisplatin. Forget the side effects, it‘s the systemic feeling of your entire body being attacked that truly makes it one of the most miserable experiences of my life. I’ve joked with a few nurses and asked if they’ve ever sampled the stuff because there really is no analogy to describe the feeling. Per Dean’s request, I asked my onc for scopolamine patches, so we’ll see on Monday if the request goes through.

There’s a couple of limiting factors regarding this dose. My kidneys haven’t been doing great, and I do have ringing in my ears. Surprisingly no neuropathy at all. My hands and feet feel fine, and I have plenty of dexterity and no tingling whatsoever. Last week my onc said they were going to go ahead with the third dose as long as they could get the creatinine under control. In my circumstance, the third dose is really important given the spindle cell aspect of my cancer. We’ll see what the blood work shows this Tuesday.

All in all, I am doing ok. Eating, trying to drink as much as I can, trying to move around a bit. I am fatigued, have some minor tongue sores, and my throat is all swollen. Despite my rigorous skincare routine, parts of my skin are sloughing off and becoming quite painful. Unfortunately, this is happening mostly around my neck dissection scar. I dry heave randomly throughout the day. My speech therapist says it has to do with how much my throat has swelled on the inside. I don’t vomit, but the heaving will last for about 5-10 minutes before it stops. It’s especially bad during the night and so it is difficult to sleep.

I dream about food. Italian sausage sandwiches, delicious handmade sushi rolls, spaghetti bolognese, brick oven pizza, pot roast, rice and beans, garlic bread.... When I have a little energy, I’ll cook for my wife. I always did the majority of the cooking. The other day I made her a vodka sauce with some fantastic San Marzano tomatoes and fresh peas, topped over some rigatoni. It smelled absolutely wonderful, but I dare not place it in my mouth. Sometimes I regret agreeing to treatment because food was such a great and important pleasure in my life. I read horror stories all over the Internet about how people never got their taste back, or it is only 20% of what it originally was, or it came back and then went away again, or only the first bite or two tastes like anything, or they now hate things they used to love. I don’t want to hate my favorite foods... If I am being brutally honest, that scares the crap out of me.

One day at a time for now.

Jbrooks

JAL23... I am another person

JAL23... I am another person following your posts. I am in week 3 of my radiation treatments ( no chemo thank God) and so I feel to some extent I am following in your footsteps. God bless you and please keep us informed!  

JAL23

I had a frank conversation

I had a frank conversation with my med and rad onc today. My creatinine has stabilized at 1.1, so the worry is that a full third does could put me at a stable creatinine at most of 1.6. Although not great, my med onc looked at me and said this is an important does. He said with spindle cell we just don’t know what the most effective tailored does is, and that I really had one shot at curing this. My wife and cried because of the tough choice in front of us. Ultimately we went ahead with the full third does, effectively rolling the dice on my kidneys. What a crazy day, but it’s over. The last chemo is in and it’s time to sleep it off. Will update about my kidneys when I know more.

OKCnative

Been following your posts.

Been following your posts.

I'm a 47 year old male with SCC BOT HPV+. I'm about 4 months post treatment.

Just know, things can return to normal fairly quickly. All my fatigue is gone, my saliva is improving each week and my taste buds are 100%. Had neuropathy for a few weeks in my legs, but increased exercise greatly reduced it. It appears I had the same treatment plan as you.

People can't even tell I ever went through treatment!

Post treatment can actually get worse for a few weeks, but then it often clears up quickly.

I credit my success to my young-ish age, taking in my water and calories, a positive attitude and excercise every day.

Good luck!

katlou

Thank you for the information you are providing

I just started reading your posts.  I have a similar situation in that I have had a superficial squamous cell carcinoma excised from the underside of my tongue on the left lateral side.  I was also told that "wait and watch" was the way to go, however, I am uncomfortable with that approach especially since the pathology report doesn't mention how large the cancer free margins are although they are all negative.  Ct scan of neck was normal but I am trying to get a second opinion to make sure nothing more should be done.

Thank you for posting about your journey with your cancer treatment.  I am really sorry that you are having to go through this.  You are doing a real service by keeping people posted on what to expect each step of the way.  It sounds grueling but reading what you are saying is actually helping me (and I am sure others) to feel more prepared if I also end up needing similar treatment down the road.  I have you in my prayers and I hope that very soon you will have this over with and feel better every day.

JAL23

katlou said:

Thank you for the information you are providing

I just started reading your posts.  I have a similar situation in that I have had a superficial squamous cell carcinoma excised from the underside of my tongue on the left lateral side.  I was also told that "wait and watch" was the way to go, however, I am uncomfortable with that approach especially since the pathology report doesn't mention how large the cancer free margins are although they are all negative.  Ct scan of neck was normal but I am trying to get a second opinion to make sure nothing more should be done.

Thank you for posting about your journey with your cancer treatment.  I am really sorry that you are having to go through this.  You are doing a real service by keeping people posted on what to expect each step of the way.  It sounds grueling but reading what you are saying is actually helping me (and I am sure others) to feel more prepared if I also end up needing similar treatment down the road.  I have you in my prayers and I hope that very soon you will have this over with and feel better every day.

Hi Katlou,

Hi Katlou,

glad this is helpful. Some weeks I wonder if I am scaring people rather than encouraging them. Truthfully I am ok... not comfortable, but ok. Patience is key.

Regarding my initial diagnosis, if I could do things differently I’d get to a major cancer center. I think MSK wouldn’t have waited on the elective neck dissection. Who knows how differently my path would have wound up. My CT scans were also normal, but PET scans show metabolic activity.

Thank you for keeping me in your thoughts, and I look forward to reporting back about the recovery side of things once I’m finished!

JAL23

OKCnative said:

Been following your posts.

Been following your posts.

I'm a 47 year old male with SCC BOT HPV+. I'm about 4 months post treatment.

Just know, things can return to normal fairly quickly. All my fatigue is gone, my saliva is improving each week and my taste buds are 100%. Had neuropathy for a few weeks in my legs, but increased exercise greatly reduced it. It appears I had the same treatment plan as you.

People can't even tell I ever went through treatment!

Post treatment can actually get worse for a few weeks, but then it often clears up quickly.

I credit my success to my young-ish age, taking in my water and calories, a positive attitude and excercise every day.

Good luck!

OKCnative,

OKCnative,

Thanks for responding. Many of your posts in other threada have truly inspired me on my path through treatment. I recalled your posts about getting through without a PEG and the intensity of busting through treatment. You are an inspiration and a role model for how to fight this thing.

I look forward to a day with no pain, full taste, and no fatigue. Get back to the gym regularly and having delicious dinners. It is my HOPE that I can follow in your footsteps with recovery. Thank you.

John

JAL23

Jbrooks said:

JAL23... I am another person

JAL23... I am another person following your posts. I am in week 3 of my radiation treatments ( no chemo thank God) and so I feel to some extent I am following in your footsteps. God bless you and please keep us informed!  

Hi Jbrooks!

Hi Jbrooks!

Keep going! Do whatever you can to eat and drink. It’s going to get worse before it gets better (I’m still in the “worse” part) but it’s only 7 weeks. That‘s no time at all.

The chemo is rough, probably the most rough part of the treatment (for me). Consider yourself spared in that regard.

Thank you for keeping me in your thoughts, and I’ll keep updating as treatment comes to an end for me.

katlou

JAL23 said:

Hi Katlou,

Hi Katlou,

glad this is helpful. Some weeks I wonder if I am scaring people rather than encouraging them. Truthfully I am ok... not comfortable, but ok. Patience is key.

Regarding my initial diagnosis, if I could do things differently I’d get to a major cancer center. I think MSK wouldn’t have waited on the elective neck dissection. Who knows how differently my path would have wound up. My CT scans were also normal, but PET scans show metabolic activity.

Thank you for keeping me in your thoughts, and I look forward to reporting back about the recovery side of things once I’m finished!

Hi JAL23

Your information is scary at times but for me I would rather know everything upfront because it helps me to adjust to the idea.  Also, we can all see how well you seem to be doing under the circumstances albeit with some very very bad days.  That is encouraging because you are having some very rough treatment and you are making it through day by day.  How are you feeling after your last chemo?  I was actually surprised to see you post so soon afterwards.  

 

JAL23

katlou said:

Hi JAL23

Your information is scary at times but for me I would rather know everything upfront because it helps me to adjust to the idea.  Also, we can all see how well you seem to be doing under the circumstances albeit with some very very bad days.  That is encouraging because you are having some very rough treatment and you are making it through day by day.  How are you feeling after your last chemo?  I was actually surprised to see you post so soon afterwards.  

 

Surprisingly, I think I’m

Surprisingly, I think I’m handling the third chemo a little better than I initially thought. I don’t know if it’s because I had the last two to prepare, that I’m getting better nutrition, or that I’m excited for this to finally all be over. Maybe it’s a combination of those things! Almost there!

Dean54

Good deal JAL23, I did too

Good deal JAL23, I did too but thought it was the patch. I'm 9 weeks out tomorrow but my throat hasn't changed a bit and may even be a bit worse so even tho I feel ok and am exercising almost everyday, it has me a little concerned.

What you said about the food in an earlier post is also the way I feel. I'm dying to have some real food, looks at pictures all the time on websites and practically start drooling only to know I can't go there and am worried I never will.

Hang in there, you are almost done!

katlou

question

Hi JAL23,

First off, how are you doing?  I hope you are feeling better since your last chemo.

I was wondering if you would mind answering a question for me (only if you want to share and when you are up to it).  I just received my pathology report for my second opinion and this report mentioned the size of the tumor and the margins whereas my first one did not have this information.  As I mentioned in a previous post we are similar only in that mine was diagnosed as a superficial squamous cell carcinoma and I was told close observation was all that was needed. The size is very small; 1.5 mm by 0.6 mm in depth.  It is HPV negative.  I have once again been told now by my new doctor (there is a cancer team approach involved this time) that we can just observe or I can opt for a wide excision around the area which I am opting for.  The closest margin is 0.5 mm so I don't feel safe with this. There will be no neck dissection.

Now for my question:  Would you mind sharing the size and depth of the tumor you had removed?  In reading the things that you have written I almost think I need to consider requesting elective neck dissection regardless of how superficial my tumor is.  If you don't want to share this I am fine with that, I understand the need for privacy.  

Thank you for whatever you can share and I wish you the best going foward.

JAL23

katlou said:

question

Hi JAL23,

First off, how are you doing?  I hope you are feeling better since your last chemo.

I was wondering if you would mind answering a question for me (only if you want to share and when you are up to it).  I just received my pathology report for my second opinion and this report mentioned the size of the tumor and the margins whereas my first one did not have this information.  As I mentioned in a previous post we are similar only in that mine was diagnosed as a superficial squamous cell carcinoma and I was told close observation was all that was needed. The size is very small; 1.5 mm by 0.6 mm in depth.  It is HPV negative.  I have once again been told now by my new doctor (there is a cancer team approach involved this time) that we can just observe or I can opt for a wide excision around the area which I am opting for.  The closest margin is 0.5 mm so I don't feel safe with this. There will be no neck dissection.

Now for my question:  Would you mind sharing the size and depth of the tumor you had removed?  In reading the things that you have written I almost think I need to consider requesting elective neck dissection regardless of how superficial my tumor is.  If you don't want to share this I am fine with that, I understand the need for privacy.  

Thank you for whatever you can share and I wish you the best going foward.

Hi Katlou,

Hi Katlou,

id have to pull out the original path report to tell you the gory details. What I do remember was that it was a 2.8mm depth of invasion (different than the actual tumor size you’ve listed) and was poorly differentiated. i believe depth of invasion is the important predictor for neck spread. With that said, I also don’t want to give any medical advice either - one person‘s cancer might metastasize very differently than another.

I also had a .5mm negative margin, but I was not as worried about that as I was with my neck. In hindsight, I (personally) would have just gotten the neck dissection done electively. If you are worried or concerned, I would highly recommend getting multiple opinions from different cancer centers. You have the luxury of time to decide what to do.

I would highly recommend not using  my single personal experience with tongue cancer as justification for going through a fairly extensive surgery unless professionals are also on board.

JAL23

Dean54 said:

Good deal JAL23, I did too

Good deal JAL23, I did too but thought it was the patch. I'm 9 weeks out tomorrow but my throat hasn't changed a bit and may even be a bit worse so even tho I feel ok and am exercising almost everyday, it has me a little concerned.

What you said about the food in an earlier post is also the way I feel. I'm dying to have some real food, looks at pictures all the time on websites and practically start drooling only to know I can't go there and am worried I never will.

Hang in there, you are almost done!

Hey Dean,

Hey Dean,

Thanks for checking in. I’m really sorry to hear your not feeling a bit better in your throat, despite being 9 weeks out. I really do hope it turns around soon. Food is rough - yesterday I put some shrimp in my mouth from my wife’s Chinese food takeout. What a disappointment. I could barely swallow it and it had absolutely zero taste.

I keep hearing that the recovery isn’t a gradual thing - it sort of springs up on you quickly. Hang tough and here’s to hoping we both wake up one day feeling significantly better and tasting!