Jump to content

Pet Scan Results and Treatment Plan


CH29

Recommended Posts

After a shocking first oncology visit last week to learn my hubby has metastatic adenocarcinoma, he went Friday to have a port put in and a pet scan.  Yesterday we met with his doctor and were told he has mets to liver, bone, lymph nodes.  Definitely not what we wanted to hear but yet here we are.

Tomorrow he starts chemo (Keytruda, Alimta, Carboplatin).  He goes every 21 days for treatment and after two rounds they will do a CT to check progress.  Praying for a positive reaction to the treatment.  The positive stories on this site are always so helpful and give hope.

Link to comment
Share on other sites

CH,

The surprise and shock of a lung cancer diagnosis is almost universal--a Stage IV diagnosis, especially so. Once it was akin to a death sentence. Now with immunotherapy (Keytruda) and the combination chemo treatment (Alimta and Carboplatin), there is every reason to expect good results from the mid treatment scan.

Hope is indeed a good thing but very fortunately, it no longer substitutes for effective treatment. Immunotherapy is a game changer, saving lives for the often late-stage diagnosed in this community.

You've done your research and good for you. Your husband's port installation will take the drama of accessing a vein out of the treatment equation. That is so very important! 

Let's call in the immunotherapy troops @Lisa Haines to share the good news treatment results with CH.

Stay the course.

Tom

Link to comment
Share on other sites

  • 1 month later...

Thanks for the above Tom, I have read your story and it was very inspiring.

Next, an update.  My husband had his third round of chemo today.  Prior to this we met with the doctor for results on a CT from this week.  The doctor was very pleased with the progress - his cancer has shrunk, in some areas significantly.  I had hoped for a good report, because he has just seemed better all around since treatment started (less pain, gaining some weight back).  Finally, some good news!!!  

Also, I had our home checked for radon and the levels were high, so we had that remediated.  We've lived there for 10 years and have raised our two children in this house, so another thing I'm trying not to worry about.  In our area no one ever talks about radon, this was something I knew literally nothing about

Link to comment
Share on other sites

CH,

As a retired civil engineer, I remember Radon entering my vocabulary in the mid 1980s. In certain parts of North America, there is very high risk of Radon accumulation in buildings, especially homes with below grade basements. I believe it is now classified as the second leading cause of lung cancer. 

I would suggest your children have a low dose CT scan and participate in annual screening as a result of their exposure. Medical insurance coverage won’t likely recognize the risk and may not cover the screening cost, but low dose scans have come down in cost so they are reasonably affordable.

Great news about your husband’s treatment. Let’s hope his end of treatment scan shows NED. 

Stay the course. 

Tom

Link to comment
Share on other sites

  • 1 month later...

Update on my husband...After 4 chemo treatments + immunotherapy, another CT was done.  This one showed continued improvement over the previous scan, so good news.  Doctor wants to continue with the same treatment for a couple more times since it's working and being tolerated fairly well.  His red blood cell counts were low today, so the next treatment was postponed a week, and he was given a shot to raise the red blood cells.  He's still working a fairly active job but has been so tired when he gets home and doctor thinks that's why.

For background, my husband is 45, non-smoker, no bio-markers.  I sympathize with others on here because it can be quite the roller coaster to find the correct diagnosis; in our case it was a year of many doctors visits and different doctors before cancer was confirmed.  

Take care all!

Link to comment
Share on other sites

CH,

I'm happy to learn your husband's treatment is moving things in the right direction. That is grand good news.

Of course your husband is tired if working. I worked through 12 of my infusions and was exhausted. I also experienced times where my red and white cell counts were low and indeed received Procrit for the red and Neulasta for the white. Neulasta was very painful but both worked.

Stay the course.

Tom

Link to comment
Share on other sites

  • 1 month later...

Hi - Just checking in with an update.  I always think there must be someone in the same situation that may benefit from these posts.  So my husband finished his chemo.  Around the 5th round of Carboplatin, Alimta & Keytruda his bloodword went into the tank and he had to have a few blood transfusions.  For the 6th round they dropped the Carbo and gave a reduced dose of Alimta and the Keytruda.  The latest CT scans after this were good and showed continued improvement.  'Near complete resolution' of lymph nodes was great to hear.  Also liver mets were decreased in size again.  At this point the plan is to do a Keytruda immunotherapy infusion every 3 weeks, so hopefully that will continue with good results.

Also - I requested a brain scan after reading all the posts on this site.  It had never been suggested, I guess because he had no symptoms.  Luckily it was clear.  Take care all!

Link to comment
Share on other sites

@CH29This is great news. Enjoy the results.

I am in the same space as your husband. I guess we are having the same journey. Had my PET scan yesterday after 6 infusions. Almost complete resolution of the nodes and significant reduction in the lesions. Doc said minimal disease now.

Now on maintenance therapy, have dropped carboplatin and only on Alimta and Keytruda for another 5-6 infusions and then a PET scan.

Enjoying my first good news in days. A toast to you too.

Link to comment
Share on other sites

On 2/15/2022 at 9:06 AM, CH29 said:

After a shocking first oncology visit last week to learn my hubby has metastatic adenocarcinoma, he went Friday to have a port put in and a pet scan.  Yesterday we met with his doctor and were told he has mets to liver, bone, lymph nodes.  Definitely not what we wanted to hear but yet here we are.

Tomorrow he starts chemo (Keytruda, Alimta, Carboplatin).  He goes every 21 days for treatment and after two rounds they will do a CT to check progress.  Praying for a positive reaction to the treatment.  The positive stories on this site are always so helpful and give hope.

So sorry to hear that. I remember how I felt hearing that I had stage 4 adenocarcinoma NSCLC. That was a bit over two years. I had immunotherapy, target therapy, and now chemotherapy. I would get a second opinion if I got anything I didn’t like in regards to the treatment plan. I have been told to find a “comprehensive cancer” center if possible, as they typically get better results than those who lack that designation.


Immunotherapy and targeted therapy is a game changer for many of us! Trials are also a promising bet, as  I have been told. I think it’s also a wise idea to ask about palliative care to be added to the plan.
 

Last of all, I am getting my fifth chemotherapy infusion (three months so far),  as I am typing. It has not been that bad, hair loss and fatigue for a few days after my infusion. They have found ways to eliminate the agony many experienced in the past, so if they offer it, it’s worth trying. You can also halt it at any point.
 

Lastly, I would ask for a panel of genes from Foundation One to reveal any targetable gene mutations, if you haven’t gotten this information yet. It needs doing before any treatment.

Good luck to both of you!

Link to comment
Share on other sites

  • 7 months later...

Update: I have received nine tri-weekly infusions (paxel / Carbo), and my scan results have revealed no evidence of disease! I am now on a monthly physical exam. My Oncologist says that I could remain clear for months or years.

My prayers are for all of us to beat this horrific disease.

Link to comment
Share on other sites

Jack,

Oh my, your post is grand good news. NED is a wonderful outcome. Look forward to those monthly oncology consults stretching to quarterly, then 6 months, then yearly. I'm now at the yearly check and even have the luxury of a low-dose CT scan with no infused contrast.

Stay the course.

Tom

Link to comment
Share on other sites

  • 2 months later...

This post has given me more hope than I’ve had in the past two months. 
My husband is 31, non-smoker and just got diagnosed with stage 4. He has a tumor in his left lower lung with spread to his chest lymph nodes and to lymph nodes in his abdomen.
We have been so grateful to receive a clear Brain MRI and no spread to his organs. He has started chemo and immunotherapy as of yesterday (carboplatin + pemetrexed + Keytruda). He has gotten bio marker testing but this was still the treatment they recommended. 
Trying to remain as positive as we can. Any advice for us as we go through this journey? 

Link to comment
Share on other sites

Dear Loving Wife,

Sorry to hear about your husband, but I am glad you are able to get some hope from the many positive posts on here. There are so many more options from stage 4 people now, and I have come to think of my own diagnosis as a chronic illness that may flare up and may require ongoing care, but not necessarily as a terminal illness.

I was diagnosed 20 months ago at 49, with involvement of chest lymph nodes and metastasis to the adrenal gland. I am on ongoing Keytruda (immunotherapy) and had a round of radiotherapy 14 months ago (which I recommend you ask about as the combo with systemic therapy is quite effective). None of the treatments have been particularly rough, and I am living a quite normal life. My main tumour and all lymph nodes are no longer active. I do have a small growth on my adrenal which may be removed in surgery, but being able to operate at all is a positive as that wasn’t even seen as an option a year back.

My main advice at this stage is to allow yourself and your family some time off if possible. Treating stage 4 is a bit of a marathon, and a rather stressful time to get through and will take up a lot of your mental capacity for some time. Hopefully, the treatment will be effective and you will slowly start to come out from under the cloud.

All the best, Rikke

Link to comment
Share on other sites

LovingWife,

Rikkie's suggestions about hope for a good outcome and taking time for yourself are good ones. These days, Stage IV disease in some presentations of lung cancer is treatable; some on immunotherapy have amazing results. I pray your husband's combination chemotherapy with immunotherapy is successful.

Suggestions? Has your husband considered having a port to ease the find-a-cooperating vein drama of infused chemotherapy? I had three 18-week cycles of infused chemotherapy and after the first cycle of treatments, my veins became uncooperative. A port is a simple outpatient surgical procedure that eliminated the drama of infused treatment. It will also work for blood draws. Here are suggestions I wrote down years ago for infused chemotherapy. 

With combination chemotherapy, sometimes one has combination side effects. Your husband's conventional chemotherapy drugs carboplatin and pemetrexed are mostly well tolerated. Keytruda is also well tolerated. Sometimes, however, the combination is not. The best way of understanding side effects is by charting their onset and retreat. The side effects tend to repeat in nature and sequence after each infusion and knowing the onset can often allow starting mitigating medication before onset to hopefully nip the symptoms "in the bud." I found my chemo nurse to be the best person to discuss side effects and mitigation strategies. I saw my nurse for each infusion and my oncologist every 3 infusions, and the nurse answered my phone calls and email message.

These days, most medical practices have a practice portal that allows one to view test results. Pay attention to blood chemistry results in blood tests, especially to variances from normal. Red and white cell variances are expected but sometimes chemo affects blood salts like magnesium and sodium. When these fall below a certain level, muscle cramping can start and it can get pretty painful. It is normal to have a mid-cycle CT scan to assess the effectiveness of treatment. The most important thing we are looking for in his first test is the words no progression. If the report indicates tumors shrinking, this would be grand good news. 

When immunotherapy works, it works really well. I know many survivors from LUNGevity who have about 2 years of Keytruda infusions and after that period, treatment is no longer needed. One's immune system takes over. Your husband will likely have 6 infusion cycles of combination chemo then carboplatin and pemetrexed are stopped and Keytruda continue for perhaps 2 years. We are aiming for NED--no evidence of disease. Cure is something very few of us ever attain but NED means a normal life expectancy is expected. Here is information on terms used to describe lung cancer treatment outcomes. To Rikkie's marathon point, lung cancer is so dangerous because it often recurs after a scan shows NED. Therefore, once your husband achieves NED, he will likely have scheduled CT screening scans for the rest of his life and hopefully, these scans continue to report NED as the finding. I was NED for 17 years and finally, my oncologist reported that I was cured and promptly retired!

Knowledge is power in our disease and this resource will help you understand our disease in all its presentations and treatment methods. I encourage you to read in. And, of course, one must master a strange new vocabulary, and this glossary will help. Our Foundation also has scheduled Zoom sessions for caregivers of lung cancer patients. Our next scheduled caregiver Zoom is Thursday, May 25th at 8 PM EDT. Contact our LUNGevity RN nurse navigator at kgriffith@lungevity.org to get connected to this Zoom. You both are in this for the long haul and tips and tricks learned from other caregivers might help you. Looking back on my treatment, I now realize my wife and caregiver had the harder row to hoe! Here is information on the many resources available in our LUNGevity Foundation. Give it a read.

There is life after lung cancer. If I can live, so can your husband. Immunotherapy works and faith and hope are good things.

Stay the course.

Tom

Link to comment
Share on other sites

  • 3 weeks later...
On 5/17/2023 at 9:04 AM, Tom Galli said:

I was NED for 17 years and finally, my oncologist reported that I was cured and promptly retired!

 

@Tom Galli this makes me so happy to read. This is what I am praying and manifesting for my husband as well!

 

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.