Ok I need input

My husband has SCLC-limited since May 2012. As I stated in the past he completed chemo in the first week of Sept. and PCI on Oct 23. The third week of November my husband started complaining of terrible neuropathy and a headache behind lt eye and pain in upper rt shoulder , back and neck pain. It got so bad we went to ER. They Did a C-T scan of chest, came in and said it looked like their was a lesion on T-1 and T-2. Went to oncology who sent him to rad.oncologist, did MRIs of upper spine and head they say they are negative. Tom started running a fever ended up in hospital on antibiotics. Did bone scan which was negative. Bronchoscopy negative but yet my husband has been dehydrated twice and needed fluids, has lost 22 lbs now since second week of December, he's sleeping around the clock and barely eating. The oncologist he just needs time to rebound, he's fine, NED... But I can't buy that.... Not that I want my husband to have cancer anywhere but I just don't understand why he is so tired, won't hardly eat anything, huge weight lose. Is this normal with SCLC? Can it be from chemo/ rad this far out?? I just have a feeling ... Hello they haven't done any testing below chest since Oct 2 nd.... When PET Scan was done. Any thoughts on this would be truly appreciated. Thanks Lorrie

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You have ever reason to be suspicious of their assessments. None of it sounds like it adds up even remotely. It seems like they should have done another Pet Scan as soon as these symptoms started. Does he have phnuemonia? Have they put a feeding tube in?
Prayers for ya'll coming from Texas. Keep up the fight; cancer doesn't always win.

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You should get a second opinion. Radiation can make a person weak and effect the appetite but his symptoms sound like there could be more going on. Your insurance should cover a second opinion.

Becky

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PCI can have these kind of side effects, even this far out ...but I do agree with bluegrass here..you can always get a second opinion. This will ease your mind and your worries, which are very legitimate..SCLC is aggressive and tricky.
God bless,
Darlene.

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It is very possible it is from the PCI treatments. After I had my PCI treatments about 2 to 3 weeks later I slept around the clock not eating or drinking anything and my family made me go to hospital and I ended up in hospital for 3 weeks I did not know that I was still alive but I came out of it and had to do 1 1/2 months rehab was really tired for 3 more months but I feel fine and got my strength back up now. I also have SCLC Limited. So I would maybe see another doctor or go to ER Good luck and God Bless

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My wife finished her PCI the 24th of September, she had many of the same symptoms that lasted, really until the end of December. She lived on boost protein drinks from about the middle of November until Christmas week. The effects of the PCI were so much harder on her than both chemo and the lung radiation.

That being said, keep after the providers to keep looking for possible solutions. One thing that my wife experienced was dizziness and severe vertigo. It was attributed to chemo, then to the PCI, in the end it was Positional Vertigo.

I will pray for you and your husband.

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I would go for a second opinion...Take all reports with you..Prayers and ((((((HUGS)))))) from Seattle. xoxo,NDM

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hey Lorrie,
I have a slightly different perspective. the doctors sound like they are on top of the cancer stuff. however, it does not sound like they are anywhere near being on top of the side effects. you are describing two side effects that are hurting him bad - dehydration and lack of appetite. the medical community can take care of dehydration (and they SHOULD be doing this). they also have the ability to help him with lack of appetite - they have different kinds of meds that can help - megace is one - they also have marijuana derivatives that will override his body's desire to not eat. if I were you, I'd be down having a pleasant chat with his medical team asking them to get off their dead butts and help him. chances are good that he might start feeling a little better once he gets full of water and nutrients - I hope so.
many hugs
Pat

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He needs a second opinion for sure. 22 lbs since the middle of December is not good, as well as running a fever....something does not sound right. The fatigue is normal as well as neourpathy, the dehyrdration and appetite loss they can help with and should be, demand answers, you are his voice.

jlewi014....i also have had vertigo that comes and goes...benign positional in my right ear...have her try the Eply manouver...it is on the internet.

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Stomach feeding tube should help too..Neighbor kid has had one since birth and is now 16...good luck, xoxoxoxo,NDM

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Please ask for an AM Cortisol blood draw to check the
levels of cortisol from his adrenal glands. It can sometimes happen that the PCI treatments can affect
the pituitary gland and upset the 'axis' of pituitary and
adrenal gland functioning. As well, I would suggest an
electrolyte panel be done to assess, in particular, his
potassium, sodium and calcium levels.

It is unusual for PET scan to be used to determine disease
status in someone who has had chemo/radiation therapies. The trend would be CT scans and possibly a bone to determine if there is any metastatic activity.

Finally, if your husband was on a course of steroids
for any appreciable length of time, this can have an
influence on function once they are stopped.

I wish you and your husband well.

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Thank you everyone for input!!! It gives me food for thought, that's for sure! The home health nurse came out today, Tom is down another 5 lbs since Friday! His B/P's are running 80's / 46/50. Hr 111. Nurse called oncologist who said what do you want me to do! its from the dysphasia... I could hydrate him everyday won't do any good! Unreal!!' The nurse ask the doctor when do you want to see him, he said 3 months from today for scans. So after she hung up with him! I have some choice words about the situation! Do not make me mad! So we are bring in palliative care which consists of a doctor and nurse that will come out and evaluate his symptoms and Tx him st home. Will probably put a port so he can be hydrated as needed, etc. So tomorrow is the neurosurgeon's appt to r/o mets to spine and brain! Fingers crossed' hopeful some answers will be given. So we may sure what exactly is on the films! I trust this doc with my life... been friends with her for yrs because she saved me from being paralyzed from a car accident yrs ago. Yes by the end of the week my husbands oncologist with be fired, I'm sure!!!

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Lady
Do you mean dysphagia, (swallowing problem)? If so . do you think it could be damage done during PCI?
You are a women after my own heart. Take them on for sure. I am sure you know that talking to a patient advocate, if needed, does wonders with doctors.
I pray for peace to stand along side of you with the determination, strength and wisdom that you will also need.
Sue

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Ladyozer,

Your situation sounds just like me. My husband also has SCLC since May they also said he NED. But he didn't feel good always sleeping losing weight. Has no energy to do anything. I having a hard time believing he is NED. I only hope and pray he is.
Best of luck you and your husband.

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Update again!! thank you very much for all of your kind words and encouragements! Saw neurosurgeon yesterday I so love this doctor! She said I don't see any cancer in the spine or the brain but I'm with you something isn't right.... She said why aren't they giving him a medrol dose pk. (Steriods) at the very least if they think its from the brain PCI...It would help with inflamm. and increase appetite which would put weight on.... "How long are they going to let him waste away!" Then she said he needs to have a lumbar puncture to r/o infection caused by the radiation or to see if there are cancer cells in the CSF. If the results are negative then she will order a repeat MRI of the whole spine not just half. She said your thinking cancer? I said .. well maybe? or infection? She told me you may not be to far off... Follow your instinct you know your stuff. So with more research done I called the neurologist and spoke with him, another great doc. He said he would admit Tom tomorrow to the hospital since he was on the hospital service this week but the flu epidemic is overloading the hospitals and he doesn't want Tom anywhere near that! And never do I !! thats all we meed!!!He feels that there is an infection somewhere and it might have only been half treated in the hospital when he was in. Because Tom gets worse at night, has night sweats, weight loss and the pain was not as intense after antibiotics. So Monday at 1:00 pm is when Tom will do the procedure. Hoping for answers !?! And who the hell knows what his oncologist is doing while his patient is being tested by everyone else... ..his last comment to Tom and I was I'll see you in 3 months when I will scan Tom again!!! Oh Ok, sure!!! Lol!!!

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Glad to hear things are heading in the right direction now. Hope you get the answers soon! Good Luck to him.

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Thanks Luvhubby! I sure hope so, too. So glad the doctor is coming out tomorrow because my husband's B/P standing is 66/52 ..HR 119. He says I feel fine but I'm sure this isn't so but pushing the issue or to take him to the ER is out of question per him. So tomorrow the doctor can deal with him and his oncologist! Lol! I'm tired of fighting.

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That is very low bp!!!!! Also, just my input. My husband was diagnosed with SCLC last Feb. First they thought limited stage because they saw tumor only on right side of lung. Bone scan and brain scan didn't show any mets. Then right before chemo, they did a PET scan - that changed everything - he had bone mets. I think the PET shows lesions; whereas the bone scan shows bone penetration or something. Definitely a difference in what's picked up. Was always mad about this because we went from hope to way less hope.

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Please request labs for Cortisol and ACTH. This level
of standing BP is known as Orthostatic Hypotension.

It can happen that the adrenal glands become insufficient
in their production of cortisol which can be a cause of
Orthostatic Hypotension, among others symptoms.

If you have the opportunity to request other labs to be
ordered, I would suggest a complete Endocrinology
Panel be done to include thyroid function (TSH and
Free T4).

As well, a full panel of electrolytes testing should be
included.

I wish you and your husband well.

Dwindle in Montreal

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