Tumor Recurrence
My Story February 13th, 2009
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The words you never want to hear. Particularly for me since in just a matter of days I was to start the vaccine I have been waiting for for nearly 4 months. But, this is exactly what has happened. It’s small progressive tumor measuring about 1cm x 1cm but measurements really don’t matter when you’re dealing with a GBM - this progression took place in 30 days time while I was receiving Avastin and Irinotecan infusions so I’ve failed both Temodar and Iriontecan. Back to the drawing board – we need to identify and use other options.
I didn’t feel good going into this one. I have had headaches since my last infusion a week ago Wednesday and also over the past 24 to 48 hours I have experienced a few dizzy spells. I tried to correlate this to chemo but it didn’t add up. Of course I’m not a doctor but I have performed a lot of research so going into this MRI I was thinking two things: 1 – there could be edema – some brain swelling associated with the chemotherapy and that is creating some intra-cranial pressure resulting in the headaches and now perhaps some dizziness or 2 – there has been recurrence resulting in the same. Rachael was worried about the scan mainly because I was – I’m usually ok with them.
So here is a comparison of the two scans - last night’s and a month ago. These are just two coronal flair images but basically tell the story. The image numbers are different but the total number of images in the set are also different. They generally correlate:
01/03/09 MRI
02/12/09 MRI
It’s pretty easy to see greater enhancement at the bottom area of what is the tumor cavity left by the October 2008 surgery. A lot of that is edema but within this area is where new progressive tumor has been identified. I haven’t been told yet where this is in relationship to the motor strip – it could also be right on it but it explains the headaches and also may explain the dizzy spells.
Needless to say last night was not a good night here. Rachael and I are tremendously frustrated with all of this. I know a lot of you going through this feel the same way with your own situations when receive news like this. You run the gamut of solutions and it’s one step forward, two back. However, you have to keep going. We stop, get angry, get angry at God, wonder where He is, etc. etc. but then we do settle back down into the solution and this is no different. I will be talking to my doctors today quite a bit.
So again, two surgeries, radiation to 60Gy, failed Temodar, failed Irinotecan (obviously) – what are the options and more importantly what is the strategy. The strategy is to shrink this or remove this so I can use the vaccine – period. How do I do that – one option is gamma knife surgery. For a small area such as this, gamma may be a great method but the experts will tell us. The other is using different chemo options until we find one that my body / tumor responds to. So far, it hasn’t happened. The third is traditional surgery but I’m not keen on this idea nor do I think my Neurosurgeon will recommend it. And, as far as chemo goes, I also don’t want to use chemo that wastes me away. If my days are ever numbered, I’m not going to spend them withering away in front of wife, children and family. I know there is a time when some of that happens but the point is I’m not going to make a choice to ’save my life” at the expense of having a very low quality of life. If possible, Gamma is the best option – nip it and then start the vaccine.
So more decisions. For anyone just reading this – don’t let this post overwhelm you. Start reading my blog back somewhere in 2007 or something. There are lots of things that go on and when you go through all of them, you are equipped to handle these situations – for the most part. It’s still not easy. I had some tears yesterday for sure – my wife did too – it’s very upsetting. The point is, if you are newly diagnosed, even with a higher grade tumor and are reading here, you have opened a book in the middle that you should start at the foreward and at least read the first few chapters.
I’d appreciate your prayers at this point. We just have decisions to make. Please pray for guidance, strength, wisdom, perseverance and faith. We know that God transcends all of this – He is bigger than science, so-called statistics and anything else that is a part of this. Prayers are key though. Thank you!!
I’ll keep this updated as we move forward.
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Mark, I’m so sorry to hear this news. I can tell you’re really trying to keep it together to make these big decisions – you continue to amaze me. I will pray for you and your family to keep hope and strength up. Your doctors will also be in my prayers for wisdom and compassion in helping you through this. While I only know how hard it is from the spouse’s point of view, I can say with certainty that it’s a difficult road (to say the least).
i am sorry to hear about the recurrence. sending you white light and good wishes to you and your family from portland, ore
Mark, I’m actually too tired to post but your story is too heart breaking to not respond with a supporting reply. I’m currently going through my 2nd month of Chemo therapy (Temodal, 420mg/day) and the lack of seriuos side effects are probably an indication for the lack of shrinking of my tumor. So I may be facing the same challenges soon.
Anyway, that is not what wanted to say: I think that I’ll not as brave as you, facing/going through these medical procedures while you have so many questions that nobody has an adequate answer to. If you’re like me this is all very frustrating because while doctors are figuring out to what your tumor will react, the clock is ticking.
I hope that you’ll be strong enough to face your future treatments. Especially the gamma knife surgery. I know I will be not (I’m suffering from uncontrollable claustrofobia, e.g. I had already problems with the radio therapy helmet and going through the MRI and MEG was hell).
I wish you strength,
Payter (Cranius)
Hi Mark,
I’m so sorry to hear about the recurrence. I’ll be praying for you and your family for hope and strength.
Mark, I am so sorry to hear of this bad news. Your faith and transparency are a blessing. I have recently been encouraged by the story of Elijah and the prophets of Baal. He heard the sound of thunderstorms of blessing coming when there was not a cloud in the sky. As a survivor of meningioma (I go to discuss MRI results today), I wish you great peace, direction, and faithfulness.
Linda from Indiana
You may find it amusing but the anti-spam word that I had to put in to post this is “Relax” Which I am sure is hard to do.
Go for Gamma Knife, it is quick and painless. I wish I could have rather had that. My tumour was too large even though it is low grade.
I understand how you feel about chemo, I would feel the same way too. Just see how it goes. Maybe an option is to take it initially and if you find no improvement, rather drop it.
My other suggestion is that you meditate saying ” Thank you Lord that you have killed this tumour in Jesus’ name” repeat this over and over again. Claim the healing that says “by His stripes you have been healed.” Say to God that he promised it and you now claim it yours. Remember that God is the word and you are a child of God. Use the power He gave in your words.
I am not usually a religious person, but I believe that God has a plan in store for us. Be bold, take control and believe. (I know how hard this is – I have been there myself)
God bless
d:)
Oh and take vitamin E and omega 3. Lots of it. They also thought my tumour was growing, but rather it was swelling.
Try to think of it as just another setback. Try to leave it with God. I know it was the last thing you wanted to hear. Prayers have been sent up for you. Hold fast.