Help Philip get treated for CIDP

Update posted by Philip Joseph Tumacder On Apr 08, 2020

As much as I wanted to update immediately after the treatment, I wanted to personally assess what may have changed within a couple days. I'm happy to announce that the pain has definitely lessen!
There is still obvious pain, but as Dr. Damian, Dr. Manuel, and Dr. Hufana explained, and in short, the cause of CIDP is that my own immune system attack the nerves of my body and directly destroying them in real time, and with this chemotherapy, which renders me immunocompromised, allows my immune system to cease all attacks. Thus I have no more immune system to cause pain and destruction.

FAQs:

You might ask,"But then why are you still in pain?"
Before the treatment, my immune system has been on a rampage for almost a year. So in other words, there is a year of damage to be repaired. Sadly, there has been permanent damage such as my left foot, both legs, and some fingers. Those permanently damaged will no longer return and I most likely can never feel touch again on specific places. On the bright side, I no longer fear losing my right foot, my legs, or the rest of my hands again, which I had constantly feared every second of my days before!

"So what now?"
Now it is the time to recover.
My body had no rest for the past year, and now it can.
I still continue the pain medication plus the many other I have been diligently taking, but now also take many supplements prescribed to boost the healing and regeneration process.
My immune system will slowly recover in the future and then CIDP continues once again, and that is why I must return back to the Cancer Institute to receive another treatment. This may happen once every 3-6 months, but I read that some had been in remission for over a year, so please hope and pray for the best along with me.

"What about the IVIg? Why are you going through chemotherapy instead?"
Even though we've received such a vast and generous amount of help and blessings from the many kind souls out there that heard our pleas, being able to afford and maintain the IVIg has become unrealistic and unobtainable. If we waited until IVIg was possible, I know by then I'd lose much more of my body. A huge thanks to Dr. Damian from giving us this option that competes with the IVIg at only a fraction of the price in comparison!

"Wait go back for a second. This treatment makes you immunocompromised indefinitely?"
Yes! I traded the very thing that is supposed to protect me from disease, viruses, cancer - everything to stop CIDP progression! The pain was enough to make me not look forward to another day, but the night after the treatment, I slept without interruption for the first time in so long. Nothing else gave me that peace and happiness in a long time and I don't mind being more careful with my life from now on just to maintain that.

These have been the most asked questions recently and I would happily tell all that had helped and are willing to help!

I've also had a few questions regarding receipts and proof of price for more transparency.
I completely understand because it is your money that has been given to be used, and if I were in your shoes, I too would like to see that my donation had helped! Here are the receipts and the discharge papers of recent:


The total cost of the entire treatment was 104,986.20 php
The followup tests will be around 10-15k in about 9 more days.
If my immune system (CD20) is still too high, then there will be another need to do the chemotherapy a second time. Dr. Damian did say its rare, but still a possibility to be aware of. Hopefully I don't need to go through it twice a session!


Thank you all for your continual love and support.
This would have not have been possible if it weren't for you.

All of our love and thanks from me and my family!
God bless you













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Update posted by Philip Joseph Tumacder On Mar 30, 2020

I was supposed to have my treatment weeks before, but you all know the case that is unfortunately plaguing every nation today.
The rampage of the Corona-virus has made it difficult for many of us such as those with chronic pain and illnesses, cancer patients, and a slew of others to get the treatment and help they need. This also included me with my autoimmune disease (CIDP) that was only diagnosed just earlier this year.

Recap of what happened during the passed few weeks.
I had a major infection at the site of where I had my root canal treatment last year.
Since I'm immunosuppressed, the infection went rampant and destroyed much of my jaw within just a few days.
I had to have emergency dental surgery to remove my tooth, the granuloma mass, and even part of my jaw bone due to the infection. That was a very important procedure to do since I cannot have any pre-existing infections during chemotherapy since it'll make it much worse. Other than that, I've been rationing on medication since panic buyers have taken much of the pharmaceuticals, still in great neuropathic pain every minute of my day, and additional numbing paralysis continuing mostly on the left though much slower than before since I started corticosteroids and azathioprine.

Also, my scheduled Physical Therapy was suspended and postponed due to the risk of acquiring the COVID-19. It saddens me because I truly want to walk again without my crutches or the wheelchair.

On the plus side, the operation site on my foot has FINALLY CLOSED! Over 2 months sheesh!
After this experience, I've value a normal immune system so much more and definitely took it for granted when I was healthy.

I want to take this time to thank everyone for doing their part in this crisis.
Thank you for taking the precautions of washing your hands, disinfecting, wearing masks when outside, and keeping the safety and health of those you come into contact secure.
Most of the world has a competent immune system that can naturally fight off viruses, but the elderly with lowered immune systems due to age, and those with autoimmunity that have no choice but to destroy their immune system to survive, as well as the cancer patients, dialysis patients, and the many others out there that need to travel to be treated on a daily basis - On behalf of them all, I want to extend my sincerest thanks for doing your part and saving lives.

I would like to give a big thanks the Dr. Manuel and Dr. Damian for staying in contact during the quarantine and making sure I get the help and treatment I need amidst all this.

I've been a bit shy to speak and relied on my good friends and loving family to being my voice on social media.
But, I'll try to be more open again. Feel free to AMA! (ask me anything)

Thank you for taking your time to lend a hand while I, and many others, are reaching out.
-----


Here is the link to my GoGetFunding Campaign to help donate towards my treatment goal and to read my experiences with CIDP (just sharing too does so much for us):
https://gogetfunding.com/help-philip-get-treated-f...

More information on what CIDP is on rarediseases.org here:
https://rarediseases.org/rare-diseases/chronic-inf...

Here is my little sister's ko-fi where she's running a co-campaign towards my treatment:
https://ko-fi.com/visodette

Here is a link for all Hospitals in the Philippines that need your help:
https://www.flipscience.ph/news/covid-19-donations...

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Update posted by Philip Joseph Tumacder On Mar 02, 2020

THIS WEEK I'LL OFFICIALLY BEGIN PHYSICAL THERAPY!

Dr. Hufana (neurosurgeon) along with Dr. Manuel (neurologist) have been always reminding me that I'm in a very special case with numerous illnesses to deal with along with the greatest fight - CIDP. The one we didn't foresee was my quickened inability to walk. Its been well over a month now that I haven't been able to even stand on my own two feet. My neurosurgeon can't pinpoint why this and how it happened, but now we're seriously pushing to begin rehabilitation on my legs ASAP.

I'm very excited to have hope to walk again.
Oh yeah, if any of you see me with long hair, I did so intentionally.
The length has shown the amount of time its been that I haven't been able to walk, and if you see me with my hair-up and styled like before, you'll most likely see me walking with a fresh new look!

Dr. Manuel has opened other options with the IVIg that might be a little more cost effective, but for now, she has referred me to Dr. Damian who is a neurophysio that can more in-depth understand my case through my biopsy and electron microscopy along with the EMG and CV results.

Today, I will plan a schedule with Dr. Damian as soon as we have the means to start the first treatment which we have all been working together for. The first cost will be around 400-600k PHP. It will be a 5 day procedure once I can go through it.

In other painful news, the pain has become considerably worse since I stopped the steroids. I thought my right leg would be next but it has been my right arm and hand that has been getting the slow end that I felt happened to my left foot before. I've been advised by other CIDP survivors of supplements that can help (which Dr. Manuel has approved and agreed with as antioxidants), reducing my stress as much as I possibly can, and with spending time and speaking more to my supportive family and friends.

Also, I'll probably be in a wheelchair soon.
Time to see the world in a small person's perspective LOL

Please continue to help me and to spread the word of this campaign.
Thank you all that have given me their love and support throughout this battle.
All your kind words, prayers, and advice has done great healing towards my physical and mental health during this struggle. I see and hear every word even if I'm unable to reply directly.

Once again, thank you all and may you be blessed many times over.










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Update posted by Philip Joseph Tumacder On Feb 18, 2020

For the past 2 weeks, I have been trying to taper off of the corticosteroid (Prednisone) and switching to the chemotherapy drug (Azathioprine) as the immunosuppressant since the damage being done through the predinsone towards my diabetes blood sugar has been too much for my body to handle even with huge injections of insulin.

I've been on the azathioprine for only 2 days now and have been having very noticeable swelling and inflammation to my feet return. The azathioprine did help lower my blood sugar levels but it is not as effective towards stopping the neuropathic damage than the prednisone. The pain is slowly returning back to full force. I will be meeting Dr. Manuel and Dr. Hufana again when I can to see if there is another alternative to maintain my body while we all work towards the goal of the IVIg treatment.

Hoping and praying for the best!

I also want to thank everyone for their help and support in this battle against CIDP, Peripheral Neuropathy, and Diabetes.
I can't do this on my own and just knowing all of you are here with me during these hard times has been the reason I'm still smiling even while in pain. Truly, thank you all.


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Hello Jill, I’ve heard about you from my girlfriend who heard about you from Pamela. I’ve also listened to your advice and will be trying out your advice very soon! I’m very happy to know you’ve been through this and have a fellow CIDP survivor to talk to. I’ll do my best to control the stress and try to always relax. Thank you so much for all your help and advice. God bless you

Philip Joseph Tumacder

Update posted by Feb 21

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I hear you and I’m sorry you have to go through this devastating condition. I know it’s excruciatingly painful. It’s hard but stay positive. You will be healed and pain will go away soon. Praying for you.

Jill Sarmiento

Update posted by Feb 20

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Update posted by Leslie Entila On Feb 16, 2020

Since not all our friends have a Paypal account, you can also opt to donate via BPI and Gcash:

BPI
Account Name: Leslie Jan A. Entila
Account Number: 3069983285

Gcash
Account Name: Philip Joseph U. Tumacder
Number: 09667986672

Thank you everyone for the support! 💖

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Guest

Backed with ₱3000.00 On Apr 08, 2020

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Daniel Whiteman

Backed with ₱1000.00 On Mar 18, 2020

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A wink? Yes.

Robert Stanley

Backed with ₱500.00 On Mar 17, 2020

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Nathalie Fleurie

Backed with ₱4000.00 On Mar 13, 2020

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Anonymous

Backed with ₱510.00 On Mar 13, 2020

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I hope this helps even if just a bit. Sending you thoughts and prayers

Kate Pike

Backed with ₱10.00 On Mar 02, 2020

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Anonymous

Backed On Mar 02, 2020 Amount Hidden

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Hope Philip can get his treatment! Best wishes

Anonymous

Backed with ₱2500.00 On Feb 27, 2020

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I'm a CIDP survivor myself. Hang in there, Philip. Our God is amazing. There is hope and you will be healed. You got this!!!

Jill Sarmiento

Backed On Feb 20, 2020 Amount Hidden

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Continue to fight!! Prayers are with you and your family!!

Guest

Backed On Feb 18, 2020 Amount Hidden

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