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Update - CRC spread to skull bone

Bellen
Posts: 281
Joined: Aug 2016

Hello all - Just an update - Had biopsy recently for a skull bone tumour diagnosed due to feeling off balance.  It was very invasive and still healing.  I had terrible symptoms before biopsy - off balance, lots of head and ear pressure, jaw pain, hearing loss, earache and headache, head feels like a heavy weight.  I believe the biopsy has now caused nerve damage - from swelling to the facial nerve.  Now I'm also suffering with Bell Palsy type symptoms - my eyelid doesn't close on own, eyes very sore, dry, numbness on side of mouth, etc.  Beleve me, it causes one to feel very down, and very depressed feeling.  Sometimes, you just don't know if you can go on.  The biopsy did not relieve any of my symptoms unfortunately.

My Onco said it is extremely rare for CRC to metastasize to the skull bone.  Has never seen this.  ENT who did biopsy has never seen this.  My latest CT (have been off chemo for 2 1/2 mos) shows that some of tumours in liver are bigger and there are some spots in my lungs that have changed. I asked if I should carry on and he said he had other options.  Can't stay with folfiri because he said it is no longer working -  folfox may not be an option due to the nerve situation in my face - so mentioned panitumumab (spelling?).  Said causes acne, bad rash - how can I put up with that as well with everything else?  This has been a very difficult journey.  If anyone has any suggestions about the panitumumab, would appreciate advice, help.  Always thinking of the group and wishing all well.  

Trubrit's picture
Trubrit
Posts: 5175
Joined: Jan 2013

This is terrible news.  I am so very sorry for your continued trials. 

How awful to have the Cancer spread into the skull. How awful for the Doctor's to tell you it is very rare. 

Have they suggested any other relief for your symptoms other than continued chemo? 

There are several here who have experience with panitumumab/Vectabix especially the rash. I know they will be along soon.  I hear it is dibilitating but doable.

You are in my prayers. 

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6510
Joined: Feb 2009

So sorry that you have gone through all this but the rash should be your least concern.  Like Tru said, there are others that have been on this so they can chime in.  I've never heard it going to the skull bone before so it might be that this new drug might work on that.  I'm praying that you get some relief and wishing you well.

Kim

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Oh no, I'm sorry you're going through this. I've been on panitumumab and will be again in a month and a half. It's the only one that's improved my situation. I found that the rash is not painful or uncomfortable in any way. To be honest I forget I have it until I look in a mirror. It shows up on the face, scalp, chest and upper back. It goes away completely a few weeks after the regimen of chemo is over. You might not get a 100% dose, I get 75%. They can tell how well it's working by the rash- looks like acne- on your face. 

What happens is the chemo targets a certain type of cells and encourages the body to fight those cells so it's an immunotherapy which means it's not as harsh as some chemos and has less side effects. Unfortunately, the same type of cells are in the skin of the face, head and upper torso so we get the rash. It's kind of comforting to see the rash and know that the chemo is doing that to the cancer. You can actually see how it's fighting it. If you're going on it, do it fairly soon. We're planning mine so it's over before summer because it does make you very sun sensitive. I'll probably be on it twice a year for the rest of my life.

It also causes hair growth on the face. An odd side effect. I didn't get it until after my sixth treatment. It gave me longer eyelashes, which I still have and I finished it in September. But it also gave me a bit of a moustache and beard and a unibrow. I just plucked all that out. That only lasted a few weeks. The rash gave me very faint spots on my face that have stayed but they're very faint. I don't think anyone would notice but me. And only in some areas. 

Good luck!

Jan

Worriedchild
Posts: 56
Joined: Dec 2017

Dear Bellen lots of Prayers for you

you are a warrior and you will Win this fight 

we all are with you

can you share what was your stage of diagnosis and which site right/left colon

Bellen
Posts: 281
Joined: Aug 2016

Hello all - Thank you for your well wishes.  i have CRC with multiple liver mets.  Have been on folfiri since Oct 2016, and was told that it was shrinking the liver tumours.   Started a chemo break to recoup in Nov and later in the month was off balance, had CT head done, which saw the skull bone tumour.  ENT did biopsy - confirms spread of CRC, and also CT showed some growth in some lung spots.  The skull tumour is on the left side and is probably causing my feeling off balance.  Using a walker, which helps a lot, but hardly getting out with feeling so crapoy.  Need to heal from this biopsy, which was more invasive than I expected, and to allow some time for palsy symptoms to relieve.  ENT took these symptoms very lightly (said would resolve on own, and then finally ordered prednisone  - just finished) - so right now just looking for this to subside a bit - still have all the other symptoms, but would sure like to reduce the facial nerve, eye, mouth side effects.  Appreciate this group.  Thank you so much.

Bellen
Posts: 281
Joined: Aug 2016

Hi Jan - How many treatments would you be having before a break before summer?  Would you know how long of a break or what the protocol would be?  Would you also have the 5Fu with it?  Just wondering if you could tell me about the treatment, and whether there are other components that are added to the panitumumab?  Was there a specific gel, cream, antibiotic that helped with the acne, rash.  Can you wear makeup to cover the acne - it's that "look good, feel better" thing - lol.  But I do think that is important to not get too depressed.  If you need to wait until you start it - would you let me know then - thanks so much.  I am seeing my Onco in about 4 wks.  Sure would like some info from someone who has actually had this treatment.  Thanks Jan, always thinking of you, and wishing you well. 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I was supposed to have 8 treatments last year but only completed 6 before I got sepsis and was hospitalized so I didn't finish the last two due to being very weak for a long time after. I assume I'll have 8 every time but we didn't discuss it yet. Nothing else, just the Panitumumab. I'd go every two weeks and get an IV of it. The only side effect I think I had was some fatigue in the evenings.

The rash did get bad enough that make up couldn't cover the lumps and bumps but it didn't start until over a week into it. For the first while make up covered it fine. I did use some to cover and particularly red spots. I'll be honest, I couldn't have worked during it because I work as a receptionist in a dental office and it would have been just too noticeable. I have pictures but it doesn't show up very much in them. I didn't colour my hair during it so next time I'll colour it right before I start. I have a lot of gray.

They gave me an emollient that is used for rashes but I didn't find that it made any difference, I just used the face cream I normally use when I did use cream.

The only reason we're waiting to start it right now is because I've only been feeling stronger for a couple of weeks after the sepsis and my onc would like me to be as strong as possible plus I need a ct scan before I start. When I was out in public I'd kind of hold my head down a bit to avoid stares and I'd check to see if anybody was staring but I found that few people even looked at me. Everybody said it wasn't as bad as I thought it was. I was sure I'd scar but I didn't.

And thanks for thinking about me! I really appreciate it!

Jan

plsletitrain
Posts: 253
Joined: Jul 2017

Someone told me fish oil is good for my colon.  I haven't researched anything about it but when I was pregnant I was prescribed by my ob-gyne to take it so I'm sure its not harmful.  You might want to ask your doctor about it.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you! I've tried taking fish oil supplements in the past but burping up the taste of fish all day stopped me from continuing. Yucky!

Jan

Ruthmomto4's picture
Ruthmomto4
Posts: 659
Joined: May 2013

i hate that you are going through this, I hope the new chemo will help. Sending you love, light, and healing. 

plsletitrain
Posts: 253
Joined: Jul 2017

Bellen, I'm so sorry to hear this but at the same time hopeful because your doctor has a treatment plan.  That's a good start.  I only tried folfox and capox so I don't have much input other than to say that I hope you find something that will help ease or alleviate the symptoms.  And I hope your new chemo regimen will work strong.  I hope its just the rash that will be the worst side effect, you've undergone so much that having nausea or other body-weakening side effects just won't help.  Stay strong.

Kazenmax's picture
Kazenmax
Posts: 416
Joined: Feb 2016

So sorry to hear this. Stay strong. I'm sending all my good energy to you and hope you find some relief soon.

k

phuckcancer
Posts: 63
Joined: Apr 2016

oh I am so sorry to hear this ((((((hugs))))))... stay as strong as you can and research as much as you can. !!

PamRav's picture
PamRav
Posts: 280
Joined: Jan 2017

Love and healing to you.  Hoping you get relief from your symptoms soon. 

Pam 

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

I hope the new medication is able to kill off the tumors.  It sounds like Jan had some good results from it. 

I'm starting on the Folfiri this week, was supposed to start last friday but it will be this friday instead.  I've been off chemo way longer than I expected and am very concerned about the cancer spreading as you say yours did in the the couple of months you were off chemo.  

Prayers,

Joan  

 

Bellen
Posts: 281
Joined: Aug 2016

Hello Joan - First of all, I want to wish you all the best.  Think of you often.  I started with folfiri Oct 2016 and had it plus avastin until Nov 2.  At that point, the chemo seemed to be helping, as I was told that the liver tumours had shrunk.  I was on a chemo break to recoup from 26 treatments - needing more blood transfusions for low hemoglobin, etc.  Had brain scan mid Nov which found the skull tumour. Who knows how long it had been growing, as I had not had a brain CT - only chest, abd, pelvic all along.  Obviously, the folfiri did not help with the skull tumour.  When I think back, I had been off balance a few times, but it got worse in Nov and then quite bad mid Dec.  i have had no treatment since beginning Nov, but had the biopsy - which I think was much more invasive than I was expecting - quite sore behind ear, hearing affected, Bell's Palsy symptoms, sore to wear glasses, sleep on, etc.  Yes, I don't think this is good that I have been off chemo so long as well, and I worry that I may still feel awful in 2-3wks.  And not ready for chemo again.  Basically homebound now because of these symptoms.  I probably had more side effects because I had intestinal issues prior to starting (such as scarred stricture in small bowel).  I wish you well Joan and hope that the folfiri is really effective for you.

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