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Troubles grasping CT results
NormRay
49 Posts
I had a CT update recently and having troubles grasping the findings. My initial sinus tumor required chemo and 33 radiation doses to my head Nov/Dec 2020. They think the mass is in a necrosis state but still there. This year they found more spots on my lungs and liver and am currently in immunotherapy for them. I have only had 3 treatments so far and another tomorrow. They found some had actually shrunk but others grew slightly. My oncologist said not to worry about them yet because treatment of this kind is slow and they still could respond well over time. My worry started when my oncologist and NP examined my head more than usual asking about pain or discomfort. My tumor pinched nerves so the right side of my head has been numb for almost a year now. My pain has been outside of this area by my right temple and jaw. They told me my CT showed more deterioration in my sinus and cranium bone and was collapsing. I knew the radiation would weaken my bones but never expected it to do this much damage internally. It worries me that this will continue to the point where the cancer won't take me but the damage caused from the treatments will. Has anyone else been in a situation like this?
I will continue with my treatments and fight to rid my body of all cancer. I just recently purchased a tshirt that says "Victory will be mine" with a burgandy and white ribbon (head & neck). I hope it is coincidental since I purchased it before my results and am wearing it tomorrow for my treatment. I know I will regain my motivation and positivity soon but I hate these steps backward.
Thanks for reading my rant and wishing you all the best.
If we make it to tomorrow we must be doing something right!
Norm
4 Replies
ACH2015
2147 Posts

Hi @NormRay

You have a good understanding of what is going on, and like you it is important to understand these issues faced.

There is always the fine line of the treatment vs the collateral damage balance. Yes, the treatments are needed to deal with the cancer, but have to be measured against the overall effects they create in their wake. Is there a way to strengthen the bone degeneration / deterioration you mention? Any drugs perhaps ?

You mention immunotherapy, and the oncologist mentioning not to worry about some spots growing vs others shrinking. Easy for them to say “don't worry” however they are correct in saying the therapy takes time to work en masse. What I would clarify with the oncologist is what is the cut off timeframe that results overall will be assessed to determine if the immunotherapy is continued vs another therapy. I'll use my situation. I had a recurrence of cancer, and they did not want to perform another surgery. I was put into a clinical trial for two immunotherapy drugs. The tumor continued to grow and I was pulled from that trial after three infusions - as the tumor kept growing, and the side effects became life threatening. So the Plan “B” was to have another surgery.

Like you, we hope the first line of defense will be successful, but we know many of us will need that plan B to keep moving forward. We can't help but wonder and question, and it sounds like you have a good relationship with your team. Keep asking those questions and understanding the situation. It has always helped me, and you sound like you are in the same mindset.

Another question I'd ask is if you are a candidate for hyperbaric therapy and a hyperbaric chamber? The link below provides information on bone therapy with the use of a hyperbaric chamber. https://www.baromedical.ca/medical-bone-infection-osteomyelitis.php Something to ask about to see if you could benefit from this therapy. Let us know what you discover.

Keep well, and keep the motivation you have to move you forward in your treatments and understanding the situation.

ACH2015

supersu
498 Posts

@NormRay

good morning neighbour!
it is kind of dreary/overcast morning here in EDM - hope it is a brighter day for you in CGY today.

thank you so much for your post. I did not for a second think that you were ‘ranting’. posts like this is why I come to this community for shared experience, information and fellowship with folks who are feeling the same as me!

as @ACH2015 noted, it is very easy for the health care pros to say ‘don’t worry'! ha ha really??!! don't worry!!!! ugh.
an aside: there was a fantastic digital story shared at the Calgary WELLSPRING film festival this past Thursday on this very topic. I think the video made of Iqra's story should be requisite training for all health care providers.. (end my rant!!! ha ha ha). if you have access to computer the OCT 21 evening is already scheduled and taking reservations!

I am hopeful that your treatments will continue to provide benefit and entice those reluctant spots to play along also! sounds like you and your team are working together closely, so important to have these lines of communication open.

VICTORY WILL BE YOURS!
love that you wore your new shirt to therapy….cool…show them who's boss!

cheers & happy weekend
stay home, stay safe
su

#victory #dontworry #postiveattitude

NormRay
49 Posts

@ACH2015 thank you for your response and the link. I had no idea about hyperbaric therapy. I read the page and I will have to bring it to my medical teams attention. It seems to be an evolutionized treatment rather than the traditional amputation of problematic bone issues. In my case I don't think decapitation would be a very productive or effective. Ha! Very interesting how it stimulates both osteoblasts/clasts to replace bone naturally. I will definitely look into this more.

As for my immunotherapy and alternative treatments I'd just be going back to chemotherapy so I might just see if things change for the positive in the next few months.

@supersu we have had a few cooler days here and super windy. Had to cover the tomato plants to protect from the frost. In the morning I noticed even the bird bath had a layer of ice on it. I love the fall colors but am not looking forward to everything being covered in the white stuff. (My dog hates putting on his winter boots).

I was going to Wellspring with my wife before she passed for the caregiver program but since my own diagnosis and the shutdown from covid I haven't been in many of their programs. When I was living in the city I was in the same complex as one of the founders of Wellspring here. We became good friends and walked our dogs together. She has done a few Zoom lectures/meetings so I try and join in on them but not much else. I should get back into more of their programs again. I hope things open up more so I can go there in person.

Norm

ACH2015
2147 Posts

Hi @NormRay

Hyperbaric therapy is not so new. I know of someone that had a deep bone infection years ago, and the therapy was used to oxygenate the bone, stop the destruction and help get the antibiotics where needed as well.

Hope this therapy is possible and will help you, and helps stop and to some extent reverse the bone degeneration for you. As you say, your medical team are the best source of info, and all things need be considered as it being assistive especially during your current chemo / immunotherapy treatments.

Keep us in the loop, and keep well.

ACH2015

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