Pancoast tumor survivors

Loriwannop said:

Homers syndrome
Hi Karen,hope you don't mind that I jump into the conversation? I do have Homers have had it since 2007. It really isn't a big deal to me,a little embarrassing at times but its one of the smaller things to live with in the bigger picture.I had a pancoast tumor removed in Jan. of 2008.Besides the one side of my face and neck sweating it's not a big deal.Its nice to fine a site with people with a pancoast tumor who are still living and to be able to hear that someone else knows how I feel or how I'm feeling about something relating to my particular kind of cancer.So hello to everyone.

Karenhopeful said:

Copy of letter from S.Pearson's wife regarding cancer/horner's
Hi Karen, so sorry to hear about your unsettling diagnosis... the drs. that we had were all so trustworthy... I hope that you can find that too. Yes Steve had all of the classic signs of Horners. Now that the treatments have been done since Dec. and we have had 2 excellent follow-ups, we are feeling positive. Steve was considered inoperable, which after you read about that surgery, it may have been a blessing. He had 2 week and 2 days of chemo and 7 weeks of radiation. It kicked his butt, but he slowly regained most of his functions. The 2 good things that have happened is his high blood pressure went down to a healthy normal without meds (I know... weird) and almost all of his voice has returned (despite the dr. saying his vocal cords on his right side were permanently paralyze) This is what he is left with at this point: Quite sore and weak hands (both are about the same, despite the horners was on his right side... all of his muscles are sore (he cut and split all of his wood for next winter... which is a lot, as that is our main source of heat!) and each time he went out was like the first as his muscles do not seem to get stronger and build up stamina---- doesn't stop him though....His back, where the tumor grew is, of course, sensitive as that is where it was damaged from the tumor....he gets severe pains that follow his arm down to his finger tips that passes (about 3-4 times a day--- usually when he is sitting doing nothing??...his breathing is labored, especcially when he exerts himself, but is still bothersome when he does very little (he also has recently been diagnosed with emphizema (sp.) which is a general term that covers a few lung problems??? (so we were sort of comforted by that). He says he can live with all of these symptoms if he can live. He is so amazing. THe info on the computer usually depressed us, until I finally found the sights that the survivors were on. Those drs. and God, of course did an incredible job; we are left with a cloud over my Stevies head, but I guess we all have that! Wish you well as you go through this tramatic time and I hope that you have a strong support system and trust that they sure know a lot about different kinds of cancer, even rare ones. Oh yes, he sweats on only one side of his face--- another non issue for him. Sincerely, Bonnie (Steves loving wife) written and emailed to me on March 20.2012

AlanRinHBG said:

thanks for that.
Hi to you Karen, thanks for the info. It's nice to know that. I'm still being educated every day about all this. I'm doing pulminary rehab, almost done. Those nurses are so smart about all the function stuff., the meds and all the differences. advair, spireva, and all the other inhalers. The nerve issue in the right arm is a difficult thing. Being right handed, I'm having to learn to be a lefty with alot of stuff. Writing is getting to be almost impossible anymore. It looks like a third grader's writing. It gets frustrating and I become irritatable. I can't press down on a spray can or even shaving cream. I had the dosage bumped up on lyrica and it does help some with pain but nothing for numbness. I guess we're all in the same boat and it's good to know I'm not alone. I heard somewhere that pancoast is less than 3% of all lung cancers. That's not alot but there's plenty of info. I never met in person another survivor of this but a few online. Nice to know all of you. P.S. I think it will never return,just sayin.

xmasgirl said:

pancoast tumour

hi Bonnie,  I have just found this site, and was in the process of replying to your questions, only to read further and find out your husband has pulled through.  WOW that is incredible.

My name is Fran and I am fromMelbourne Australia.  I was diagnosed with a pancoast tumour 10 years ago at the ripe old age of 45!  It started with a strange 'nervy' feeling down my right arm into my hand.  I was sent for an xray only to discover my diagnosis.

Unfortunately surgery could not be contemplated as the tumour was entwined through the nerves that run from the base of the neck across my shoulder.  I underwent extremely agressive chemo over the next 8 weeks, combined with daily radiation therapy over the same time.  3 months after completing this treatment it was found that the tumour had shrunk enough to attempt surgery.  I had a radical upper lung dissection, with the warning that I would most probably lose the use of my right arm.  This was the least of my problems.  After surgery i was advised that it was successful, that the tumour area came away 'cleanly' and fairly satisfied they had removed the area satisfactorily.

My oncologist then decided that he would commence another 12 rounds of chemo 'just to be sure'.  i only managed to get through half these treatments as i was hospitalised twice with sever fevers.

I see my wonderful oncologist now still 6 monthly, and have remained cancer free.

Hoping all remains great news for you and your husband.

Hello 

I am new in this forum.

I am Daniel Stojanoski from Macedonia, writing to you on the behalf of my father.

A few days ago, he was diagnosed with lung cancer. He is dealing with a large tumor that has metastasized. The doctors in my country say they cannot help him any further, due to the metastases he is not operable and due to the excessive weight loss they reckon he would have difficulty in dealing with chemotherapy.

We try to help to him with alternative medicine but his situation is worst.

I am Daniel Stojanoski from Macedonia, writing to you on the behalf of my father.

NON – SMALL  CELL CARCINOMA

Macroscopic appearance:

For pathological analysis was delivered a tight biopsy material which was consist of four small biopsy fragments with diameter of 0,1 – 0,3 cm.

Microscopic appearance:

Microscopic examination on the macroscopic fragments has shown that they are parts of neoplasm with well – differentiated morphology of planocellular cancer which is consist of malignant cells with medium size and eosinophilic cytoplasm and hyperchromic cores arranged in irregular nests.

In addition, focal cells show tendency of keratinisation. In tight inta-celular matrix despite the mononuclear cellular inflammatory infiltrate, was seen a rare seromucoid glands with normal morphology and a small zone of  necrosis and bleeding. Emboluses in linfovascuar space are not found.

Therefore , in submitted biopsy material was found a neoplasm with morphology of good differenced planocellular carcinoma.

Dg.  D38.1  Trachea, Bronchus and Lung

J96.1  Chronic respiratory failure

Infiltrato pulomos lat. Dex. IRC parcialis, DM II

History and status: Main issues: Pain in the right shoulder and right side of the chest, decreased appetite, lost of weight.

Current illness. All above mentioned issues are 3 mounts before hospital admission . After conducting an X-ray tomography of the lungs, the patient was sent on pulmonary clinic for further treatment. Former history of illness: Diabetes mellitus (3 months) on insulin.

Personal history.  Man, 52 years old, father of two children. He used to work as a mechanical worker. The patient is a smoker, and he used to smoke 2 packs of cigarettes at day. He denied allergy of food and drugs.

On admission the patient was conscious, speacable, oriented in time and space, eupneic and afebrile, proper skin and visible mucosa with normal turgor  and elasticity with out any changes of the skin. LGL in accessible areas are palpated. Patient takes active position in bed and he leaves impression of mild-sever ill patient.

Had and neck. Normal configuration and mobility. 

Eyes, nose, mouth, thorax: Normosthenic respiratory, movable on both sides.

Lungs: On auscultation, vesicular breathing weakened right apical.

Heart:  Heart rate – rhythmic with clearly audible tones.

Abdomen:  At chest level. On palpation soft and without pain.

Liver and spleen can not be palpated.

Urinary tract: succusio renalis negative on bout sides.

Extremities: without edemas and any deformities. 

blood condition ili blood parameters Hb=136g/L    Hct=0.40%   Er=5,0x10^12/L  Leu=20,2x10^9/L  Tr=339x10^9/L

 glycemia 7,6 mmol/L

electrolytes  Na=135mmol/L  K=4.8mmol/L    Ca=3.6mmol/L   inorganic phosphorus=0.9 mm/L

 urea 10,1 mmol/L   Creatine=65umol/L  sedimentation=90 mm/h
 

EKG sinus tachycardia fr110/min

gas analysis pH=7,38...7,46; PaCO2=6,35....4,90;  PaO2=7,4...8,97   kPa O2sat=88,1...92,2    HCO3=28,7...26,6 mmol/L  in partial respiratory deficiency

spirometry FEV1=72%  FVC=59%   FEV1/FVC=128%

Bronchoskopy- The bronchus for the upper right lobe is completely closed from malignant infiltrated mucosa.

Now i gave to him DCA 11mg/kg (he is 49kg 1.65cm heigh)

He takes and B1, black tea and juice but he eats nothing and he lose his weigth more and more

I am sorry for my gramatical errors, if someone knows some metods that can help him please write to me.

hi all

i was wondering if there is anyone above still active in the forum ?

need to ask about pancoast.

cheers, budi

Hoping for you to get better soon.  

Anxiety_Planning said:

Looking for something to calm my nerves

• I have a CT scan scheduled next tuesday.  I'm exhibiting all the symptons of a Pancoast tumor  Reading the above posts have given me some positive thingst to consider.  Thanks to everyone that took the time.  I'll be back to this site.

I am new to site. My name is Susan, and in September, I will be a 4 year survivor of a pancoast tumor. I had one session of chemo then surgery with right upper lobe removal along with some ribs.

I was diagnosed with a 9 cm Pancoast tumor in October 2020, a rather rare form of lung cancer located in the apex causing indescribable shoulder pain.  The first Pet Scan showed destruction of the 2nd and 3rd rib with a fracture of the 2nd.  My first treatment plan was radiation five days a week at the same time with chemo, Taxol/Carboplatin, once a week.  After the third radiation treatment the pain disappeared overnight.  

Five weeks into radiation I was suffering with burns and my blood counts were dropping from the chemo drugs.  My Oncologist decided I needed a month off treatment to recover.  Last week he put me on a chemo immunotherapy Keytruda treatment once every 21 days.  At this time I asked about the possibility of another Pet Scan.  He agreed and made the appointment with radiology.

Today I met with the Radiologist for results.  He handed me a copy of before and after scans and the tumor is gone except for one tiny speck on the scan..  He said “The only way I can describe this is as an absolute miracle”.  

I live alone but I came home and told my dogs I may just out live them preventing them from becoming orphaned.  They seemed especially glad to see me so I suppose they understood.

Here is my advice...Everyday I found something to be grateful for...I am so glad I am not nauseous, so glad I am not suffering with joint pain, so glad my radiation burns are healing, so glad I have confidence in my doctor, etc.  DON’T ever allow yourself to anticipate anything negative.