advanced thymic carcenoma and associated clots - 1273325

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ruples
advanced thymic carcenoma and associated clots - 1273325

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?

JimC
Hi ruples,

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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

ruples
Thanks for your reply. He is

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.

JimC
Clexane is another brand name

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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

ruples
Yes that was discussed but

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..

catdander
Hi Ruples,

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

ruples
Yes the nurses and doctors

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.

catdander
Yes, it's all too often that

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

ruples
I watched the Lungevity video

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.

catdander
Hi ruples,

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-cance...
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-conten...

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

ruples
Thanks so much, I will check

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.

ruples
Day 9 of radiation and his

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??

catdander
Hi Ruples,

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

ruples
Thanks, it wasn't really a

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.

JimC
Hi ruples,

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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

ruples
Thank you!! I get that now,

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.

ruples
20 sessions of radiation

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?

catdander
Ruples,

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

ruples
Two weeks since my husband

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??

catdander
I'm so sorry your husband is

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

cards7up
Are you in the US? If you are

Are you in the US? If you are, where is he being treated? If you're in the US, then I'd get a second opinion.
There are specialists that treat thymic cancer and that's who he should be seeing.
Take care, Judy
http://www.cancer.gov/types/thymoma/patient/thymoma-treatment-pdq#sectio...

ruples
Thanks for your concern and

Thanks for your concern and replies. We are in Australia, but I am sure the oncologists here are in contact with colleagues over there for new ideas and treatments, at least I hope so. We finally got his eyes seen to and it seems blood wasnt getting to his eyes because of the obstructions caused by the tumor . He has had fluid drained from his left eye aand chemical injected. Seems the eye also made lots of new veins to try and get blood. They said eye stroke and talked about occlusions and other things i didnt really understand.The damage to his left eye is permanent but they are trying to save some forward sight in his right. He has one lot of laser on this eye.
On wednesday they put 4 stents or shunts in to try and lesson the pressure caused by clots and obstructions ( to late to save his eye) he was on the table 5 hours and an hour in recovery as they found it hard to get access.
We have been told, 4 weeks after 20 lots of radiation, that the tumor was stable but hadn't reduced in size. We were told previously it could take up to 3months before we would see results. Was 4 weeks to early to make that call I wonder. We were also told it wasnt any use doing more radiation, we're unsure if they meant because they hoped that would have cleared obstruction and it hadn't, or they think it isn't worth it because it didnt shrink the tumor. We understand it is all palliative care but I wish they would tell us more.
We had hoped with the shunt in he would at least have more energy, but he feels less energetic, no appetitie and had diarrhoea.we have an appointment with eye specialist Thursday and Oncologist Monday. I hope we can get some answers.
It's knowing the right questions to ask methinks. When will they give us a prognosis I wonder. We get picked up with one hand and slapped down with the other :( Thanks again for your concern, I know I go on a bit, but maybe one day my questions and concerns will help someone else in the same predicament.

JimC
Hi ruples,

Hi ruples,

I am sorry to hear what a struggle it has been with your husband's eye issues, and I hope that the steps that are being taken will help.

As far as assessing response to the radiation, it may be helpful to have a clear understanding of how radiation kills cancer cells. It's not like a weapon from a sci-fi movie, zapping the cancer cells into oblivion in an instant. Instead, it alters the DNA of the cancer cells, causing their eventual demise, and this can take time. A scan 4 weeks after radiation is often too soon to adequately judge response.

There's a limit to how much radiation can safely be directed at the same area, so that is the likely reason his doctors are not recommending more.

Radiation can also cause quite a bit of fatigue, and I'm hoping that as he gets further out from radiation (and surgery), he will feel more energetic.

It is always difficult to judge prognosis in cancer patients. Anyone who tells you specific numbers is not being totally accurate. There are median survival statistics that apply to large groups of patients, but not only does this not take into account individual circumstances, but the number is a median, so half better the figure, often by quite a bit. Unfortunately, uncertainty is one of the most difficult issues facing a cancer patient and his or her loved ones.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

cards7up
It's good to hear all that

It's good to hear all that they're doing to try to help. As for prognosis, that is something I never asked about and wouldn't. I figure I'll know when I'm on my deathbed or don't want any more treatment. As Jim has said, they give you probabilities based on hundreds of people, so there are not actual time frames. If you're failing fast, then that's a sign the end is near and you'd want to get hospice on board or if you decide no more treatment, then you can also get hospice on board or just palliative treatment. Wishing you all the best.
Take care, Judy

ruples
After a biopsy on the left

After a biopsy on the left eye last week, it has been confirmed my husband also has cmv retinitis, it has really blown the opthamologist away as it was the last thing he expected to see.
He asked had anyone mentions Goodes syndrome to us during the course of diagnosis and treatment for the tumour. No one had and we have never heard of it. He said it doesn't matter now, and the worry was it can pass to other parts of the body if not controlled.
They started him on Valgangiclovir as soon as results came in and today he had both eyes injected with Foscarnet and we go back next week to get a review.
In the meantime the opthamologist and someone from infectious diseases is going to try for a meeting with the oncologist to find the best way to manage what is happening.
Seems too that the dexamethasone is a problem for the immune system when taking it, but can be an even bigger problem coming off it. He has been on it since December, and they did lower the dose at one stage, but put it back up again when he had cellulitis. I really don't understand that at all. Can someone explain that?

catdander
I'm so sorry your husband is

I'm so sorry your husband is going through such a difficult process. It sounds like the oncologist made a good decision on not giving chemo. I hope the doctors do work together to provide comfort and stability for him.

I believe you question is about steroids, in fact it's the only issue we have any info on that pertains to your husband's complicated situation.

Dr. West said this in response to a question about steroids, "...a complex topic, but the short answer is "absolutely yes". People are quite variable in how they are affected by steroids, but plenty of people are propped up pretty well by them and then feel the rug pulled out from under them when they stop. This effect can be reduced by tapering the drop, but as your husband's situation illustrates that it can still be a problem for some patients. And certainly the post-chemo malaise and fatigue that we often see in the 1-2 weeks after chemo may be contributing, along with the loss of the steroids.

It's possible to continue a low dose of steroids on a more chronic basis, but steroids do have their own risks that go with long-term use, including immunosuppression, risk of ulcers, fluid retention, high blood sugars, and some other issues, so we generally prefer to have patients on as little as needed for as short a duration as feasible. Even so, some people simply do far better with chronic steroids." http://cancergrace.org/forums/index.php?topic=4844.0
As you can see from the amount of discussions on the subject that steroids have their own set of issues.
This is a link to search results from "steroid tapering", http://cancergrace.org/search-results?q=steroid%20tapering

One important factor to keep in mind, when tapering away from steroids each person's reduction process is individual and dosing should be based on how the individual is reacting to the dose.

I hope your husband is feeling better soon.

Janine

ruples
Well after another meeting

Well after another meeting with the infectious disease Dr on Thursday, we were told the steroids may even be increased, not stopped as hoped, and after blood tests that showed his b and t cells were very low, he says my husband needs to go back to the oncologist. I said we had an appointment for the second week in August and had that day recieved a letter for a ct scan on the 1st of August. "That is not soon enough" he says, "things have changed and he needs to be seen asap". He told us he would be in touch with the cancer centre and if we hadnt heard anything by late this week to phone and tell him. Well 9am this morning we recieve a phone call from the cancer centre saying that a scan had been organised for tomorrow morning early, and an appointment with oncologist on Friday.We are now concerned at what is happening and what else they saw on the blood tests. Maybe we are worrying for nothing and the news will be good.
Things I have learned are there is a thing called Thymoma immune impairement, and that opportunistic viruses (like cmv) should always be suspected in people with thymoma/thymic carcenomas.This auto immune deficiency or immune impairement is a worry as I cant see them doing chemo or more radiation until that is seen to. Not even sure what they can do about it. I have heard of immunotherapy but I dont know what that entails, or even if he could have it would it do any good.
He did have another lot of foscarnet injected in his eyes, which he really hates, as it makes his eyes sore for 4 days after.He has also had some laser treatments to get rid of the parts of retina that have died. He is still on the valganciclovir and will need to be on it indefinetly it seems.I am not allowed to handle them so they must be pretty toxic.They are monitoring his blood to make sure they dont harm his kidneys and liver. Its a catch 22 situation, if he stops taking them the virus will get a hold again. Guess know we just wait and see results of the scan & go from there

catdander
ruples,

ruples,

I'm so sorry you're husband is going through this and hope y'all get some good news soon.

Janine

ruples
Thank you :) The first

Thank you :) The first appointment with the oncologist after a scan is always a bit scary but looked forward to with hope. . Most times they tell you results of the scan, ask my husband how things are, say no chemo, and you leave with questions unanswered. This time really wasn't any different. We saw the registrar, he was very nice and caring, in fact he was the one who arranged the stents my husband had to help with swelling and fluid. He wrote down all we had to tell re; productive cough and pain in chest as well as leg pain and fatigue. He asked about the eyes and treatment from opthomologist then without telling us results of the scan he went to get the consultant. He told us the tumor was the same size, and he didnt want to do chemo till his back was against the wall! Strange comment I thought. We asked about radiation but he said my husband has had the maximum. How is that worked out?? He only had 5 sessins then another 20 sessions, and there were others there we met in radiology who had had three tmes as much. Is there different amounts for different cancers? Or is it because its classed as palliative?? This is one of the unanswered question we are left with. He spoke about the steroids saying the opthomologist and infectious disease dr had spoken to him and that they could stop. I queried this seeing as we were told coming off could also be a problem with eyes. So a letter has been sent off saying as far as the cancer treatment goes he can come off it and has left it to the Infectious disease dr and opthamologist. Another unanswered question is that he was put on it to he'll control the cancer and that hasnt changed so what is the reason to come off it? Is this to do with the immune impairement I wonder? another appointment has been made for 6 weeks away. No reason given for the worsening productive cough, so that is another unanswered question. We see opthomologist in 4 days, and hopefully the infectious disease dr, who may answer the steroid query.

ruples
P.S When consultant said the

P.S When consultant said the tumor was unchanged, I remarked that it hadnt done anything to help, and he said "if he hadnt had it he would be dead" really blunt!! I really couldnt think straight after that let alone ask questions.

JimC
Hi ruples,

Hi ruples,

I am sorry that your husband and you have all these issues to deal with; I know how overwhelming it all can be. As Janine stated in an earlier post, we don't have an expert in thymic cancer, but I will try to provide some information about the more generalized aspects of your husband's situation.

As far as having had the maximum amount of radiation, this is determined not by the number of sessions but the total radiation dosage to the same area (radiation can be given in varying strengths over a variety of total sessions). Giving more than the maximum can cause great damage to healthy tissue. The maximum has nothing to do with whether treatment is palliative or curative; it's given to kill cancer cells in a specific location.

I can't address the question of whether your husband has a continued need for steroids, as that is best left to the various members of his medical team, conferring to determine the best balance of risk vs. reward. It is true, however, that if the intent is stop them, that should normally done via a taper. I would definitely ask that question if the final determination is to stop the steroids completely.

I am sorry about the insensitivity of the consultation in his choice of language regarding the stable scan findings. What he should have said is that in the absence of treatment, the tumor most likely would have continued to grow. With cancer treatments stable is often a good result, though disappointing for most patients, who very understandably just want all of the cancer to disappear.

Good luck with getting some answers and formulating a treatment plan.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>