New Path report--, my cancer is back again, at Primary site.

Hi Susan,

I like your poem very much. It goes straight to the point, thank you.

I weighed myself today. I didn't want to because ...things are getting worse, all around . Sure enough, my body weigh reflects the fact that I'm not doing well------- 66.8 pounds.

I've contacted my Radiation Oncologist. We need to address this tumor Directly , soon. The throat and neck areas are painful. Lying flat ( on the floor for my Phone physical therapy v exercises ) put Pressure on neck and throat. Lots of bad feeling in there, fullness...

Anyway, many times he answers me on Sundays.

Thank you Susan! You write really well and with much Feeling too!

Crystal

hi Susan,

Please, please go back and read my posts here, exactly what my R O told me.... This is New Primary cancer Stage IV, and all he can do is give me very limited High Dose radiation, and if it works it will give me WEEKS, Maybe months. My Medical Oncologist emphasized this, as well.

Susan, along with my surgeries, I had the full course of 66 Gy radiation over 7 weeks IMRT/ VMAT, and only 9 months later I had new Invasive tumors, so fast growing that it took 2 " very extensive" surgeries. My cancer mutated and it Survived 66 Gy.

to back and read EXACTLY what my R O said about this cancer::: He said because mine is a Non HP V cancer, that it is Resistant to radiation. That was proven, by the fact that it's occurred even after full treatment with radiation.

he said that the short course of High Dose therapy will knock it back and give me a little time, ( to get my affairs in order which I've already started) and my MO said radiation is limited in my case. They each said "weeks, maybe months".

This isn't my first time Susan . The full course I had in 2018, never worked. Within 9 months, I had new tumors. And now this New Primary.

I'm just stating FACTS here. I'm all about facts. Just go back and see the Clinic Notes I pasted in this post... That's why I put actual reports, etc in here, so you can read them and know I'm telling the truth.

It's likely almost 2 weeks back. So go look for it and I also pasted messages he sent me, as well.

He's already sent me one message today.

Thanks.

Crystal

Susan dear, I appreciate your support and that of everyone. I truly do.

See, I'm now down to 66 Pounds. Can you imagine how Weak I am

Yes, this is a New Primary cancer, and its metastatic, and has grown fast. If we ate counting, this is #7 or 8, but that's not accurate because the others were recurrences ( I guess. Or else none of my first treatments ever worked??).

You likely have a Normal immune system, right? Well, I was born with a partially functioning b immune system and its declined even worse through the years. It does not Recognize my cancer, and it cannot kill it. Therefore, cancer can just grow and grow completely Unchecked, in me. I don't have Immune surveillance, etc ....

I will be frank, I'm sick. Down to 66 pounds... Too weak to drive now.. Etc. This isn't a simple recurrence. This is Stage IV and I'm feeling it.

I emailed my Medical Oncologist so she knows my current weight and just a little of what I'm going through.

Thanks dear Susan. Please take good care and keep staying Safe too. 😷

💙 Crystal

Hey Crystal, I realized I never answered your email.

My apologies. To answer your question, your scans show that the tumor occupies your right tonsillar area, it invaded the entire Soft Palate,...it extends into the remaining tongue next to voice box, then it invaded the upper part of your voice box and down the side of wall of your throat on the left. That would explain many of your symptoms of not being able to talk or swallow.

I'm so sorry. You are in our thoughts and not a week goes by that we think of you and your struggles.

Dr B

This is from my oncology head & neck surgeon, an overview of what showed from my PET, then from yet another CT with contrast they ordered after the PET, to get mire detail.

As you can read here, its a large area. Metastatic stage IV terminal.

Nothing they can do,

It's a massive tumor.... No way to contain it.

Now look at this----- Even though I am in Hospice care, my Head and Neck Oncology surgical team is offering to do anything I need to help me . Dr. Browne, Chair of the Dept and Professor, internationally known surgeon, has been my doctor since 1992!! When I was in Pediatrics, and he was my ENT, for ear infections, etc.

Hi Crystal,

Robin is on vacation. I just wanted to let you know that our team is thinking about you and that you are in our prayers. Please let me know if I can do anything for you.

Kim

Oh yes, my Swallow.... Every single Swallow I am swallowing against Tumors. Susan, it starts in back of my mouth. As Dr. Browne listed, the tumors invaded The entire Soft Palate ( that's what you see in back of your mouth) ... Including tonsils areas, and that sliver of tongue that my Goal is attached to use a big ugly lump, which my Medical Oncologist noted has grown...all this and More, showed up in my 2 recent scans. From there it goes to my Epiglottis , into the Hypopharynx ( I'm quoting the scan report, there), and as Dr. Browne said, base of Tongue beside voice box and then into the upper part of voice box and down left side of throat.

Susan when I bend over.....they are Pressing on my Trachea. Remember, I had a Tracheostomy for a while. Dr. Browne told me my Trachea is very small. I forget what # Shiley I had...actually, I had 2 different ones.

no matter, but yes, turning my head ( like for physical therapy exercises)---- I can Feel the Pressure. Lots of Coughing. I've Blacked Out completely twice from extended choking spells, when I could not clear secretions. I was admitted March 23 for one of those...

i have Suction machines, upstairs and downstairs so I can get to them Fast. Hospice wants me to have a portable one even if I'm traveling by car somewhere close by. That's how urgent all this Airway problem in s.

I feel like I'm Strangling. Ha!!! Lots worse than my Bilateral Neck Diseection. I think about all the he 'll I have gone through, glossectomy, etc. And I think I've learned to just live moment to moment in these kinds of situations. Moment to moment. Something comes up? Deal with it best you can, right then....

You mention my Randal, but Randal never had Any surgery. None. Heck, he was afraid of even Scoping . LOL! True story. So he did not get cut to shreds, in the 10,000 surgeries I had for 6 recurrences, etc. And this time? There is no surgery which can fix this or end it. It's too extensive.

So, yes, I am majorly uncomfortable, I will put it that way. Between both lungs being full of infection, from the bases up, and having tumors pressing against my Trachea and filling up my mouth/ throat, it's not easy to Breathe.

Now, you can believe me or not, ---- all I'm taking for pain so far, is Tylenol 1,000 mg. That's all. . I'm on powerful Steroid for Tumor Edema. Trying to tamp down the swelling / inflammation so I can Breathe..... I take a drug to dry up the secretions that choke me. I take Zofran and robitussin ....etc.

My Neck / throat is FULL. They said I have a High Burden of tumor in Neck. I feel it all The time and that's scary. My Oxygen levels z/ blood saturation has gone down recently. ....

Like I said, I'm going Moment by Moment and day by day. I ca n not Speak at all. I have not eaten Food in over 5 Years now. no food in all that time. ...And now, it I swallow just a sip of liquid, , I cough and cough and cough. And it can turn into a choking episode. What a pain !! I'm 62- 64 pounds.

There's a little complaining for you!! 💙💙 Crystal