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D iane

Small Cell Diagnosis

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Hi.  Just dropping by to wish everyone a Happy Holiday!!!  Under a week away for the Big Man!  We aren't planning much.  

I am happy to report that husband's 2nd cycle was uneventful.  Once again, though, the joint pain from the Neulasta shot knocks him down for a day at least.   I had a cold and was nervous he would get it but he did not.  So far so good.  He does have abdominal pain off an on which is a pain to figure out.  Is it cancer?  constipation?  something else?  At least today it is very mild and he is actually out working.

Next up is the 26th going for labs and a check up.  If all is well 3rd cycle will start on the 30th.

 

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D iane, I am glade to hear you had a good holiday. I am sorry ya’ll are having to go through this. I don’t have the knowledge or experience some on here do, but I do know some who seemed not to have much chance is still going strong. Never give up. I will be praying.

Prayers

Lisa

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Hi Diane,

Sorry I did not respond sooner.  I forgot to book mark this page.  My husband's journey is very similar to your husband's.  We have some mets in the liver, lymph nods and bones. Our cocktail is the same as the one you are being treated.  We had quiet holidays, the white cells dropped extremely low before Thanksgiving so we were isolated for a week. The second round they gave us the Neulasta on his arm.  Which seemed to help, but he was fatigued much longer.   We were back on the 26 of Dec. for more scans and a third round if the previous treatment was effective.  The mass is shrinking and so is the lesion on his liver. Terrific news for us. Even the Dr. was smiling. We just finished round 3. Today the  nurse told us about the Claritin.  I will give it to him in the morning. 

We also had problems with constipation and was told to use Miralax and a stool softener.  

 

My husband is 65.  We have 2 grown children.  He was a smoker in the past, therefore we were receiving scans every six month for scarring and a stable nodule. This cancer was not there during the last scan less than six month prior. It is a scary, aggressive cancer, and I empathize with you.

Just Me

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Happy New Year!

Justme I hope the scans show the chemo combo is working.  Hubby's MO wants 4 cycles then scan.  He just finished his 3rd cycle.   I took him for the Neulasta shot today.  He is feeling weak in the legs and I've told him he needs to figure out what he can and what he should do.  He just keeps going.  He's not one to stay home and stew, but I fear he shouldn't be driving around and working. Today he said he felt like collapsing.  I had the nurse take his BP before giving him the shot.  It was good.  I will record this little episode.  They say it's not a side effect of the etopiside. (sp?) He could need to hydrate more.  I left him on the couch with some water and there is a ton other things there. I came back to work for a few more hours.  I hope the shot aches and pain are not too bad this time.....we'll see. 

#hanginginthere

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Happy New Year,

Diane, we seem to be on the same treatment plan.  I wondered about side effects from the Neulasta. He seemed weaker after receiving the medicine than the previous treatment cycle.  We finished third cycle, will start the fourth on Jan 16th.  I am not sure what the next step will be.  My husband is officially retiring, he ran his own  landscape construction company  for the past 35 years, and just doesn't have the energy to continue.  But at 66 he deserves a rest. I am also retired.

On a positive note, he seems to have his appetite back.

Justme

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Hi, our husbands are almost on the same week.  If all is well his 4th cycle will start on the 20th. 

What a way to spend your retirement!  Ugh!!!  We applied for SSDI as soon as we got the diagnosis.  He was approved within 30 days however -it takes 6 months to get your first check!  If by some miracle he makes it 24 months while collecting SSDI he would then qualify for Medicare.  He is covered under my employers health insurance.  My husband is also self employed as a maintenance/handyman.  He works on a lot of mushroom growing farms fixing stuff that breaks and keeping the crops growing.  He also has a contract with an independent living facility doing their painting.  So far, he has managed to paint a unit there, but he is definitely limited to what work he can do on the farm.  Today I think he was just running a tractor for a few hours.

Hope all goes well with next cycle.  Let's keep in touch!

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We saw both the nurse prac. and the MO today. His platelet count was a little low on Tues, so they did another draw today and it has recovered to normal level.  So, he's all set up for 4th cycle starting Monday.  Being told he will probably do a good 6 total treatments.  They gave me the CT scan orders today and he is scheduled for the 30th.  This is the scary part.  Waiting, wondering, and having to undergo such strong medicine and it's side effects.  Dr. said he is tolerating it well and told him to keep up the good work.

I know it's probably too much to expect a full remission, but wouldn't that be great?  Trying not to have too high of expectations but praying the fire inside is knocked down to a slow smolder. 

I'll be back later with results.  Take care.

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Diane,

I say wish for what you want!  I'd like to see a full remission for your husband as well and will keep you both in my prayers.

Lou

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Hi,

He's hanging in there.  The day after treatment is when things start going down hill for him.  Neulasta shot and joint pain (even though he's taking Claritin).  Then, the abdominal pains started.  He's also getting a few mouth sores and is rinsing everyday.  I feel it's the chemo drugs affecting his intestines.  It' not a constant pain, but hurts to go and gas pains/cramps are pretty bad.  He is still eating well and he seems to be making OK choices with bland food and taking the over the counter meds to keep things moving. 

He had CT scans of chest, abdomen, and pelvis done yesterday so if there's an issue with diverticulitis, an abscess or something,  we'll know.  For a day or two there, I was getting ready to call and worried they would tell me to take him to the ER.  BUT---  Happy to say that yesterday, once rid of the barium and contrast and stress of doing scans, he is feeling better.  This morning he is feeling better and went out to do some work.

So now we're just waiting for the results.  See what this cancer is doing-we're hoping it's gone!!!  He has a appt. with the Dr. next week.  Just trying to go on as normal life until then.

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Diane,

Along with the rest of the folks my fingers are crossed and prayers go up that your husband's tests bring good news. 

Lou

 

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OK.  Results are posted in his portal this morning.  Not a complete response but seems treatment did knock it out of his right lung. It says the lungs are clear.  No pleural effusion.  As we know metastatic disease can pose challenges.  Here's bottom line of the 2 CT scans w/contrast says:

IMPRESSION:

Improvement in hepatic metastatic disease.

Possible lesion in the distal pancreas as noted above. Follow-up is recommended as clinically indicated.

Possible new metastatic disease at L3.

IMPRESSION:

Improved right hilar adenopathy. New anterior mediastinal lymph nodes are present.

Bony metastatic disease is noted

Changes of pulmonary emphysema are seen throughout the lung fields.

I have lots of questions.  We see the Dr. on Thursday.  I will ask if going to continue with cycle 5 and 6.  What is the follow up on his pesky pancreas?  A biopsy?  There's a 16mm lesion there.  How do they know these mets are new?  He had prior sightings of L3 ( or was it L1?) and his anterior mediastinum nodes.  He had disease everywhere and of course they are comparing his prior scans,  I just need to understand how they know it's new and not being resistant to treatment? He doesn't complain of back pain, will he be sent to radiate the bone lesion?

That's about it for my non professional interpretation of these reports.  What do you think?  Overall some good news I guess. 

 

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Diane,

I've always been terrible at reading my own test results and often have misinterpreted them so I'm glad that you are taking the more prudent approach of waiting to speak with the doctor.  There seems to be significant improvement and once you get the answers to what might be new and what is "resistant" then your Oncologist can help develop an appropriate treatment plan to address this.  You and your husband are in my prayers.

 

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D iane,

My thoughts on the latest CT? Typical in my personal experience---a mixed bag of good and not so good.

The new met at anterior mediastinal node and spine involvement at L3 are concerning. Here is an idea. Get a consult with a radiation oncologist and see if these new met areas can be blasted with stereotactic body radiation therapy (SBRT). At best, it might stop progression and also can reduce the tumor burden and may slow metastatic activity. I'm a big fan of SBRT and throwing everything at small cell early could be a good tactic.

Stay the course.

Tom

 

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Thank you Lou

Tom, We have already had a consult with an RO back in November.  Same RO I had in 2018. Excellent DR.    He deferred treatment back to MO and said maybe see you later.  Thanks for the thought, I will be asking/reading about SBRT.  

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Saw the oncologist this morning.   We received his clarification on the L3 and chest nodes as being new.  He said they are new in relation to prior CT (Sept. 30) but NOT in comparison to the PET/CT he had in November just as treatment began.  And, he sees slight improvement in those areas.   It's obvious he is responding to treatment so we are scheduled for another cycle to begin on Monday.  He said scan again in a couple of months.  We asked what the follow up on the pancreas was, and he replied---scans are the follow up.  At this point I have to take a minute and yes be reminded there is no cure for this disease.  Radiation will only be given as a palliative treatment.  So, that's where we are.  Continue treatment until future scans show progression, or when my husband says he's had enough.  They may throw some other things at him, but I'm staying the course even though I know where it ends.

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Diane,

 

You have some things that need to be addressed for sure, but if your husband is responding to treatment that is good news. My pulmonologist puts it this way, "we're at a point where, in many cases, we can begin to treat lung cancer as a chronic condition, controlled."  And we do have people on the forum (I'm one) who are NED (No Evidence of Disease).  I'll let others speak for their experience with radiation and there are some optimistic outcomes they've experienced.  I pray the same in your husband's case.

Lou

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Hi.  Was just updating my signature for those who are following.  Cycle #5 is complete.  He gets a Neulasta shot today, so I suspect things will start to go a little downhill tonight.  

Haven't heard from just me in awhile, as well as a few others with small cell.  Hope they are doing OK.

Happy Valentines!  I made our surf and turf dinner this past Sunday when he was well.  It was delicious!

 

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Down 4 days. Not functional.  Abdominal pain comes and goes.  General fatigue and weakness.   He had this last 2 times and it's getting worse each time. We reported this and looking at his scans there is no active intestinal stuff going on.  It is not a constant pain, but when it comes he says it's as high as an 8!   Something is affecting his GI tract and we need to figure a way around this---especially if from today forward he begins to feel better and this pain subsides.    Then, that tells me it is a cumulative side effect of one of the meds (probably the Tecentriq-but could be anything I guess).  Of course I will accept another explanation, however, so far, haven't gotten one from a medical professional.  He gets labs on Thursday.  Thankfully have another week off and see the NP on the 27th.  

I fear he is getting close to saying he's had enough, and I will certainly respect whatever he wants.  He did not want me calling the Doc over the weekend, so I didn't.

Should he recover, he probably has it in him to do 1 more IF we can find something to keep him going, and comfortable through it.

 

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Wishing you the best. You are so much further down the journey than I so my advice is not worth much...but I am approaching the coming fight one day at a time, one treatment at a time, one symptom at a time.

Hoping for good results and for one more treatment, one more time.

Peace

Tom

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45 minutes ago, TJM said:

Wishing you the best. You are so much further down the journey than I so my advice is not worth much...but I am approaching the coming fight one day at a time, one treatment at a time, one symptom at a time.

Hoping for good results and for one more treatment, one more time.

Peace

Tom

Thank you, Tom.   I've been reading about your recent diagnosis, surgery, and getting set up with a treatment plan.  I don't think you will be given this immunotherapy drug?  I am hopeful that the chemo/radiation yields very good results for you and can keep away from the immuno stuff until much later...……..if at all.   

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11 minutes ago, D iane said:

Thank you, Tom.   I've been reading about your recent diagnosis, surgery, and getting set up with a treatment plan.  I don't think you will be given this immunotherapy drug?  I am hopeful that the chemo/radiation yields very good results for you and can keep away from the immuno stuff until much later...……..if at all.   

From what I can find Large cell is not normally treated with immunotherapy and the have not done any checks o  the tumor yet. I have read of two potentially effective ones tho and will talk with oncologist next week about them.

Regardless..the first line of treatment I am getting seems standard and any immunotherapy would be a second line of treatment, so I have time.

Thanks for the support and again I am hoping things get better.

Tom

Tom

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21 minutes ago, D iane said:

 

To be more specific, I have read one article that implied tecentriq could work on any solid tumor including Large cell. But it was only one article (but less than a year old). I'll talk with the witch doctor next week... 😁

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