advanced thymic carcenoma and associated clots

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March 19, 2016 at 2:45 am  #1273325    

ruples

My husband has advanced thymic carcenoma, diagnosed Dec 2015, unoperable because it has grown around windpipe and arteries. He has svcs, clots in the vena cava, aorta, interior jugular and brachial vein in the arm. He has had one lot of 5 days radiation which caused oesophagitis and pneumonia, then he had celulitis. The clot in vena cava and aorta was found when first diagnosed and he was put on thinners. The one in his arm was found when he was in with pnemonia and the one in jugular when he had cellulitis. He swells badly, face,neck, arms and ankles. He is now on day 7 of 20 lots of radiation. They are of course targeting the tumor. No one seems to concerned about the clots. How does he keep getting them while on thinners, and what are the dangers?..another question if I may, will he ever be free of the swelling?

March 19, 2016 at 7:50 am  #1273328    
JimC Forum Moderator
JimC Forum Moderator

Hi ruples,

Welcome to GRACE. Although blood thinners such as the oral drug Coumadin (warfarin) and the injected medications such as Lovenox (enoxaparin) are generally quite effective against the development of blood clots, they can still develop despite this treatment. With coumadin, its effectiveness changes with dosage, which is adjusted based on changes in the INR. The INR can be greatly affected by diet, requiring frequent dose adjustments. The dosage of enoxaparin may also be adjusted, so this is a subject which you may want to discuss with your husband’s doctors.

The swelling could have any number of causes, but it may be a direct effect of his cancer, and if so the best way to reduce it would be successful treatment of the underlying cancer.

Good luck with your husband’s continued treatment.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

March 19, 2016 at 8:27 am  #1273331    

ruples

Thanks for your reply. He is on Clexane injections for the clots. The swelling is from superior vena cava syndrome, obstructions from clots and the tumor. He is also on dexamethasone.

March 19, 2016 at 8:42 am  #1273333    
JimC Forum Moderator
JimC Forum Moderator

Clexane is another brand name for enoxaparin. His doctor should be able to render an opinion as to whether a dose adjustment might be advisable.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

March 19, 2016 at 8:57 am  #1273334    

ruples

Yes that was discussed but after a blood test they said it was working so left it the same. It is so worrying with him walking around with all those clots still there and the one in the vena cava has got bigger not dissolving at all. The vena cava is completely blocked off, and new veins have appeared on the other side of the clot to carry the blood..so darn confusing for a lay person..

March 19, 2016 at 1:48 pm  #1273337    
catdander forum moderator
catdander forum moderator

Hi Ruples,

I don’t have anything to add about your husband’s immediate issues and I hope your husband’s care team is on it. I just wanted to say hello and I’m sorry you and he are going through this. I know how difficult it is for a spouse to try to understand what’s going on and how to help. Not all doctors are equipped to explain themselves to lay people but that doesn’t mean they aren’t good doctors.

It’s helpful to prepare specific questions in advance of speaking to care staff. Don’t underestimate the helpfulness of the nursing staff they can be the life support you need in bridging the gap between the doctors and your understanding how to help.

All the very best,
Janine

March 19, 2016 at 6:35 pm  #1273340    

ruples

Yes the nurses and doctors are very nice and caring, but a lot of our questions go unanswered. A lot of the time we hear, we dont really know as this tumor is rare and this one is rarer than rare. They have decided against chemo for the time being, as they arent confident it wont do more harm to him, something about his immune system, and they dont know what chemo would be the right chemical mix. One doctor told us my husband was looking at months not years, then it was there is a 5% chance the radiation will help, another said 6 months to 3 years, another said they dont like to say as they dont know enough about this particular tumor. So yes it is very hard for him and for me. Thank you for your kind words, much appreciated.

March 20, 2016 at 12:05 pm  #1273343    
catdander forum moderator
catdander forum moderator

Yes, it’s all too often that there are no answers and so much depends on something else, even if it’s what is considered a common type cancer. Rare cancers are even worse because there’s just no record. Many oncologists have said that there are as many different types of cancer as there are people who have had cancer.

All best of hopes,
Janine

March 20, 2016 at 5:23 pm  #1273347    

ruples

I watched the Lungevity video by Dr West on pulmonary nodules, as my husband also has a small one ( 3.5mm )they are keeping a watch on. I found it very interesting and informative, I was wondering if there are any videos on thymic cancer, superior vena cava, or blood clots.

March 21, 2016 at 8:47 am  #1273350    
catdander forum moderator
catdander forum moderator

Hi ruples,

It seems to me the more you know about the patient’s specific problem the more questions you can get answered. Of course that’s not helpful for someone going into a situation like a cancer diagnosis with no background in the subject. That’s why we want to help supply you with as much as we can.

As we don’t yet have a specialty in thymic cancer we don’t have information specific to it either, except for this review of a trial that researched thymic cancer. http://cancergrace.org/lung/tag/thymic-cancer/

We have this blog on superior vena cave syndrome, http://cancergrace.org/lung/tag/superior-vena-cava-syndrome/

Since blood clots are unfortunately common in people with cancer we have several posts on the subject,

http://cancergrace.org/cancer-treatments/2011/05/29/blood-clots-in-cancer-vte-and-pe/

http://cancergrace.org/cancer-101/2009/12/22/cancer-and-clotting-protecht/

(pdf file) https://www.google.com/url?q=http://cancergrace.org/cancer-101/wp-content/plugins/post2pdf-converter/post2pdf-converter-pdf-maker.php%3Fid%3D520&sa=U&ved=0ahUKEwjgga3hjNLLAhVEQyYKHWqBDV8QFggOMAQ&client=internal-uds-cse&usg=AFQjCNHurLWER1uG0P3ekIlJRQVLLlLBZw

Anytime you want to see what we have available on a subject use Grace’s google search engine it’s very helpful. Of course if you can’t find it don’t hesitate to ask.

All best,
Janine

March 21, 2016 at 9:07 am  #1273351    

ruples

Thanks so much, I will check them all out. I had a quick look at the superior vena cava one ,and the diagram of the mans head and chest is exactly what it looks like on my husband..His face and neck is always big and sore worse on the left sde, and his arms always swollen witn puffy hands.. Is it normal with svc for fluid to just leak out of the arms. It seems his skin gets little splits and it just seems to dribble out. I bandage his arms and the bandages get very wet.

March 22, 2016 at 8:03 am  #1273358    

ruples

Day 9 of radiation and his cough is getting worse, I am hoping its not pneumonia again.He has pain in his chest when he coughs and says it feels like something ripping. I have a question about what happens if the radiation shrinks the tumor that is wrapped around the windpipe.Will it get smaller and compress the windpipe more, or will it drop away from the windpipe??

March 23, 2016 at 1:08 pm  #1273366    
catdander forum moderator
catdander forum moderator

Hi Ruples,

We can’t really answer that question. If you husband’s symptoms are getting worse he or you should speak with his care team. A cough can be very debilitating and there are options for controlling it especially considering he likely has other difficulties with which to deal.

Take care,
Janine

March 24, 2016 at 2:04 am  #1273374    

ruples

Thanks, it wasn’t really a question about his symptoms but a more a broader question about how radiation effects or controls a tumor..He has his team to monitor symptoms and to work out whats next but the time spent with them doesnt really leave a lot of time for questions and we always come away not knowing anymore, and thats why we go to the internet to try and learn more. I know there is a lot to deal with, not only the tumor but the clots and edema that the blockages cause..It’s just so frustrating not knowing what the treatment is supposed to be doing, and questions just go round and round in my head. Nothing i have read or have been told tells me what happens when a tumor that is wrapped around something shrinks.

March 24, 2016 at 7:28 am  #1273381    
JimC Forum Moderator
JimC Forum Moderator

Hi ruples,

Generally when a tumor shrinks, it is because many of the cancer cells have been destroyed by the treatment and there are simply fewer of them present to form the mass, so the mass is smaller. Although we often say that with cancer anything can happen, I would not expect the tumor to “compress” and cause a problem with the trachea, although the radiation may cause temporary swelling near the tumor.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

March 24, 2016 at 8:23 am  #1273383    

ruples

Thank you!! I get that now, it becomes smaller by cells dropping off because they are destroyed, and that causes it to get smaller, not by the whole tumor just shrinking..We are praying that the radiation works without causing him any more problems, and then hopefully something can be done for the clots and the swelling caused by so much fluid.Thanks again.

April 11, 2016 at 9:10 am  #1273567    

ruples

20 sessions of radiation finished, and now they say it’s wait and see. Why is it that they cant give us a progress report on on what is happening. A scan was taken halfway through the sessions but not at the end which was surprising to us..Were told there was a 5% chance of the radiation working, but also that it was palliative treatment. What does that really mean?

April 11, 2016 at 12:15 pm  #1273570    
catdander forum moderator
catdander forum moderator

Ruples,

When an area is radiated the process of killing cells can continue to take place for several weeks after so it’s not possible to tell how well it worked until the work is done, so to speak. To add to the problem of knowing how well radiation therapy worked is that radiation causes the tissue surrounding the area to inflame causing the area to look like a very large mass on a scan. The best way to know is to wait and see. The term wait and see is very frustrating I know but it’s reasonable in the situation you’ve described.

concerning 5% and palliative: The difference may be that the 5% chance is in relation to cure rate. Radiation can be used to cure a person of cancer if 1. it works and if 2. that’s all the cancer there is. I say that because sometimes there are micro-metastases in the blood system that later turn up in other parts of the body.

Palliative treatment is given to combat symptoms. In this case to remove cancer away from the trachea. One to the biggest differences I’ve come to celebrate in cancer care is the tremendous strides in palliative care. It has become an important piece of care that allows people to live so much better than was once considered possible or if you can believe it, needed.

I hope your husband is cured and will focus on that outcome.
All best,
Janine

April 24, 2016 at 1:05 am  #1273742    

ruples

Two weeks since my husband (Anthony Harris) finished his treatment, and no improvement, in fact the swelling of his neck, face and chest is worse and he is having so much trouble with his left eye. We have been telling everyone, oncologist, radiologist, gp, nurses that he has had blurred vision and a painful eye for ages, and we kept getting the answer that it could be the steroids or the treatment, but now it is so much worse and he can hardly see out of it at all, just shapes no detail, and his eye hurts if he closes it and touches the eyelid, and it waters constantly. We finally asked his gp for a referral to an optomologist and have an appointment for the 4th of May.( not soon enough for me)The gp explained in the referral, his condition, and that cataracts are also forming but felt something else was going on. I am so worried that this is not caused by medication or treatment, but some thing more sinister. We saw the Oncologist beginning of this week and he was hoping the swelling was down to start chemo but said they wouldnt be able to get a line in the way he is and a central line is risky because of the clots. We have an appontment to go back on the 9th May after seeing the optomologist, and I think a scan has been scheduled for then as well, so we are back to wait and see. My husband is not sure about having chemo as we have heard so many horror stories, but what is the alternative??

April 25, 2016 at 9:38 am  #1273767    
catdander forum moderator
catdander forum moderator

I’m so sorry your husband is having such a difficult time. I’m sorry too that we just don’t have specific information about treatments for thymic cancer. I really wish I could help. Places like cancer.org will have info on standards in treating most cancers at the different stages.
I hope your husband finds some relief soon. I know how difficult it is for you.
Janine

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