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Cnms55

cll lukemia

does anyone have any experience with cll lukemia

 

kaiami

Needing help with something

hello, I will try to be as brief as possible. My dad had a PET scan done recently. He has had a dry cough for about a year and he never worries about anything regarding himself. I have stayed on him about having a chest X-ray as he is an ex-smoker. Once the cough began and I noticed that it wasn’t going away, I really stayed on him about getting checked out. He had a chest X-ray done and they said they didn’t see anything and he could just go on without any further testing, but they recommend a PET scan. He had that done May 11, 2018. He never got any results, just a letter in the mail saying he needed an bronchoscopy. He went to have that done, but they weren’t able to do it because they didn’t tell him that he 1) needed to have someone with him and 2) that he needed to fast. It’s been a couple of weeks since he went and he hasn’t heard back from them with a new appointmen. He decided to go today and ask about the results from the PET scan and the results are very scary. I’m hoping someone here can help.

It says:

Indication: Lung nodule.

Comparison: CT scan - lung cancer screening from 4/2/18

Then it tells about the procedure (I don’t think this is important?)

PET FINDINGS: Hypermetabolic left hilar mass and/or adenopathy is noted with maximum SUV of 14.3 on image 96. A small FDG avid left hilar node has a maximum SUV of 4.4 on image 110. 

ADDITIONAL CT FINDINGS: There are emphysematous changes in the lungs. Small right paratracheal and precarinal nodes at midline are not FDG avid. There is a sliding hiatal hernia. Cholelithiasis is present. A low density lesion in the right kidney statistically most likely represents a cyst. Atherosclerotic vascular calcifications are noted in the carotid arteries, thoracic aorta, coronary arteries, abdominal aorta, iliac and femoral arteries. Prostate gland is enlarged. There are degenerative changes throughout the spine. No FDG avid lesions are seen in the skeleton including lucent and sclerotic focus in the L4 vertebral body. 

IMPRESSION: 1. Hypermetabolic left hilar mass and/or adenopathy, likely malignant.

2. Small FDG avid contralateral hilar node.

3. Additional findings as above.

 

They did not tell him anything! I’m trying to find out as much as I can online, but it’s hard to piece it all together. If anyone can help I would be most grateful! Thank you! God bless!

jorola

He needs to follow up with the dr

Only a dr and nothing online can properly understand and diagnose your Dad. Although they say the mass is likely maligant ONLY A BIOPSY can confirm if it is cancer. A CT scan cannot. Researching online is only going to stress you out. Best thing is to go back to the dr and determine if a biopsy is needed. If it is then you go on to the next step. This is a hard process, I know you want answers now but like anything else you can only do one step at a time. Take a breath and help your Dad take the first step. His is lucky he has you. Just remember he is going to feed off your emotions so try to mind them while in the investigation phase ok? You can do this.  Also, I recommend you starting your own thread if you have to so it does not get lost in this old one. I hope the results come back good and you don't need to though. All the best.

kaiami

jorola said:

He needs to follow up with the dr

Only a dr and nothing online can properly understand and diagnose your Dad. Although they say the mass is likely maligant ONLY A BIOPSY can confirm if it is cancer. A CT scan cannot. Researching online is only going to stress you out. Best thing is to go back to the dr and determine if a biopsy is needed. If it is then you go on to the next step. This is a hard process, I know you want answers now but like anything else you can only do one step at a time. Take a breath and help your Dad take the first step. His is lucky he has you. Just remember he is going to feed off your emotions so try to mind them while in the investigation phase ok? You can do this.  Also, I recommend you starting your own thread if you have to so it does not get lost in this old one. I hope the results come back good and you don't need to though. All the best.

Thank you, jorola!

 I appreciate the reassurance/encouragement. I lost my mother who I was very close with not long ago and I am trying to hold it together, I am just so afraid. I know you’re right, though. I spent hours trying to Google all the terms from his results and everything I found just made me worry more! I did read on one website “Although lung tumors are often initially evaluated through a chest x-ray or CT scan, PET and PET-CT scans are highly accurate at determining whether a lung mass is cancerous and may even eliminate the need for surgical biopsy.” This came from a medical website, not just a blog or something. I can’t remember which website because I looked at too many. Again, thank you for the encouraging words and kindness. I wasn’t sure where to post, and I hope I won’t need to post again either! God bless!

Glenda66

michaelcie said:

ginelle, try through acor.org and see if that gets you there. So far I have me over a hundred people active on chat. I also looked under cancer chat rooms and that is how I found oncochat. hope to see you there . my nick is "handle"

I am brand new to this and

I am brand new to this and would love to be a part of the chat room. I am new to this journey of lung cancer and have lots of wuest. I tried once, but will try again. 

rhine2

 Hello All

 Hello All

I have been diagnosed with non-small cell Lungcance in 2016 Oct. It was stage 4 metastatis.  It had spread to leisons in brain and pervic area and some lymph nodes.

 

I was fortunate enogih to get a oral teatment of TARCIvVA which kept me alve and well for a year.  Then the doctor switched me to TAgrisso as Tarciva effect seems to have diminoshed after my India tour where I had cougs and mucus. 

 

Tagrisso worked well till 2020 March when Covid-19 hit and was forced to stay hom and work. But in April time frame they saw ome new lesions in brain and felt Tagrisso does am having is not strong enough to address the leisons. So, my doctor / Oncologist increased the dosage from 80 mg/day to 160 mg/day. It helped controlling the brain leisons but increased my CK level past normal. SO, doctor switched me to alternale 1 and 2 tablets/day i.e. 80 mg one day and 160 next day. 

 

Thet surely lowered the CK to normal, but that increased dosage seems to come with a few side effects like 

 

1. Weakness in my waist down, legs - have terrible time walming normally.

 

2. Severe dryness in my eyes, especially the right one.

 

3. Double vision.

 

The doctors are baffled by the balnce issues - as the recent scan showed no brain leisons, lung cancer also under control.  

 

Dry eyes, and double vision - been pumping tear gel and hot compress sincce May 2020. No effect.

 

Now i  am on chemo threapy as the last scan shows a patch of cncer on my liver. I fishshed 4 such chemos, and now they wull put me onto maintainance chemo every 3 weeks.

 

Has anyone share my kind of experience ? I checked wirth opthalmologist (specialized in cancer related issues), regular eye doc as well. Gave me a prism glass to help me with double vision (works), Neurologist, ENT, etc still no help.

 

Appreciate the feedback and guidance from anyone.