advanced thymic carcenoma and associated clots - 1273325

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.

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..

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.

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.

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.

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??

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.

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.

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?

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??

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.

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?

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

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.

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.