New Path report--, my cancer is back again, at Primary site.
Comments
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I like it, Curt, very Sexy !!😉😍 🤗
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Dang, Crystal - you made me blush! 😳
I hope you’re doing ok, today...
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Hi Crystal,
I use to write poems in my spare time, and when I was in college. Here's one for you, hope you like it.
Some days can be extremely rough, but through God we can be tough.
It's a never ending battle we may face, we just want the cancer gone without a trace.
I wish I could take all your pain away, it's hard to cope with every day.
I don't say these things out of the blue, just know these words I express are true.....
Just thinking about you, let me know if you enjoyed my poem for you...
Susan ( Suez39)
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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
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Susan,
That was very sweet!
Crystal, I hope your day is tolerable and you get some sort of good news! Somethings got to give. I thought your mother lived with you or something so you weren't alone all of the time. I couldn't handle living alone through that. I don't mind being alone, but through cancer, I wanted someone near - I just didn't like to talk about it much to people that didn't have cancer. I got really introverted around people.
As I have stated before, you have immense strength!
L/S
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Dearest Crystal I am checking in to let you know I am thinking about you and hoping you are having a good day today. as you know I'm a prayin guy so you know there are a bunch being said on your behalf. Hopefully, since tomorrow is Monday things will be in full swing for you with your doctors and they will be on the ball and get this radiation on a fast track process to give you some relief. And who knows maybe they came up with some new direction for your plan over the weekend. We can only hope. In the meantime, we are still standing with you in any way we can and are completely in support mode for you. I am here for you gal.
A couple of verses for you--
Romans 8:38-39 For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.
Romans 8:26-27
In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.27 And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.
Wishing you the best
Take care-God Bless-Russ
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Hi Crystal,
Glad you liked the poem I sent you.
Please do get after your Radiation doctor. I had a large tumor starting on the base of my touch going down the middle of my throat. They showed me pictures "after" I completed my treatments. I was shocked because it was,quite large and long. I'm 3+ years out, completed rads and chemo in 2018. The reason I tell you this, is no matter how big the tumor maybe be, radiation can eliminate it. Although the radiation destroyed the throat tissues and my epiglottis. Reason why can't eat, drink, or speak well.
So, hang in there girl! You got this, and we are all right behind you...Remember that.
Love ya,
Susan
So
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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
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Crystal,
Wow! So I was mistaken. I was just trying to be supportive. I have had cancer MORE than once myself. And still Not out of the woods yet.
I guess I should'nt of mentioned that new radiation could eradicate your tumor. Your doctor said it won't, cause it's not HPV related. Rads will push it back some, and probably give you weeks.
I might "forget" exactly everything in your posts, but I ALWAYS mean well. I sympathize with your situation MORE than you know. For my 1st cancer, my doctor told me I probably would not make it, and I am here. Proving that miracles can happen.
I'm at a loss for words, since I can't imagine being in your situation.
Will still include you in my prayers...
Susan
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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
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I'm so sorry you are going through this and without a caregiver. I am praying for you.
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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.
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Hi Crystal,
I'm VERY SORRY to hear the news you received from your oncologist. I never could understand why even after treatments cancer comes back. I got cancer again after being NED for 24 years!
I have left ear pain, which can be a sign my cancer came back. So I have a CT scan next Saturday. My ENT looked kinda worried, since I'm still under cancer surveillance.
You truly are an inspiration to me and others on this forum. Like Randall you will fight up till your last breath. You are one of the worst cases I've read about on CSN. But through it all, you fought hard not to be depressed or let it pull you down. If it were me, I don't think I could be that strong...
If you need anything even if it's just to chat, I am here for you...And you are always in my prayers....
Susan
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Crystal,
You are in my thoughts, every day and I always hope you are finding some joy and beauty, in the midst of all your struggles....
I can’t imagine what you’re going through, and I remain amazed at your strength to face this, and to communicate it to us!
Thank you, for the inspiration you give all of us!
Curt
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Dear Susan,
I know,..... I know its terrible what's happened. And I hope your scan is clear next week.
Please remember that the biggest reason my cancer is so aggressive and now metastatic, is that I was born with a genetic immunodeficiency. My phycians tell me that I have no immune surveillance, that my immune system cannot control and kill cancer cells. I was born with a partial immune system and it cannot take out cancer . and right now I have pneumonia again, so its not doing a good job against that either.
And my IV infusions which replaced part of my immunity, were Cancelled by the emergency room doctors, and Hospice too. They won't pay for them.
Dr. Browne, my surgeon, has some Transplant patients who are in the same situation as me. Let me explain :: Transplant patients take anti rejection drugs, that suppress their own immune system so they can maintain the transplanted organ ( whether it be kidney, lung, whatever they have). Dr. Browne told me long ago that when these people get HNSCC cancers, they are MUCH More aggressive than in a normal person. And its all because of the suppressed immune system.
That allows this cancer to run rampant . No way to control it.
Also, every one of my tumors have been Negative for all HPV types. Here, they test for a big list of hpvs, and I do not have any of t. I never have.
They said that's a big reason too that I wss resistant to treatments.
Anyway.....I am sorry. On my end of things, I am progressively getting worse. No use to candy coat it, its the truth. I want to thank you for your messages, it means a lot to me. Let us know the scan results and I'm betting that its a clear scan. Mine showed pneumonia in both lungs, and metastasized cancer. Do I have pain? Oh yes. ... Lots going on I just don't feel like detailing it, . I take my medicines and I have Hospice care. Nothing else I can do. In my case, I chose DNR status and that is I n full effect. I don't want to be brought back to face any more of this !! What would be the point? So, it was a smart and logical thing to do, choosing DNR. For me.
Stay safe, Susan, that bad Virus is still out there too 😷
Crystal
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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
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Hi Crystal,
Thank you for the clarification about your immune system. How awful! I'm hoping they at least give you pain meds to make you somewhat comfortable.
My aunt had esphogus cancer. Came up all of sudden. She went to the doctors cause she had alot of trouble swallowing. It progressed so bad, they could not do anything to save her. But they did have her heavily sedated. Poor woman, I went to visit her, and I knew she was very scared.
I don't blame you for getting a DNR. You would not want to keep suffering. If thier was a cure, or if they could do something to boost or improve your immune system, so you could withstand treatments or other procedures, that would be different.
I can't even fathom what you are thinking. I think your b/f Randall inspired you to fight hard, like he did.
For me, being on a permanent FT and trach, thier is absolutely no quality of life. I hope your right, and my scan comes back clear. If not, I don't really think I could take much more of surgeries. I've had enough. But, I want you to know, you are always in my thoughts, and wish I could do something for you. Crystal, it makes me angry sometimes that our lives are cut short. We are suppose to actually enjoy our upcoming golden years.
Sounds like you have a great medical team. And having your surgeon so long is great. He knows all your medical history. But one thing I do know is about having a large tumor in your throat. I had one, and could feel it every time I swallowed. Absolutely horrendous. So experienced that one like you have. Pneumonia no piece of cake either. I really, truly, wish you did not have to go through all this. Just not right! But I must say, you are a very strong, and brave woman, a warrior. Through it all, I hear very few complaints from you and little tears. That's amazing in my book.
You have many supporters on the CSN forum who want you to at least be comfortable. Even though we know your at the end of the road.
Always remember we are ALL here for you Crystal.
Hugs to you,
Susan
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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
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Crystal and Susan,
You are a couple of the toughest ladies I've ever known. I can't imagine how challenging your situations are!
I hope you both find some joy and beauty in your day - no matter how difficult...
Thank you for the inspiration, we appreciate it! Please accept my good thoughts ... which is all I can send...
Curt
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