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NewDay's picture
NewDay
Posts: 172
Joined: May 2012

Got a copy of my pathology report Size: 9cm x 8cm x 4cm Stage: pT2a Grade: IV Type: Renal cell carcinoma, unclassified. ("does not have the typical histopathologic features either of a clear cell, papillary or chromophobe subtype, nor are there sarcomatoid areas".) Necrosis over 30 - 40% of tumor. Possibly invades the renal sinus fat ------ I would be interested in anything anybody knows about "unclassified" RCC. Also, I asked the doc why he didn't remove any lymph nodes, but I'm thinking I must be remembering the answer wrong because it doesn't make sense to me, but it was the day after surgery and I was still pretty doped up. I thought he said he didn't see any. Does that make any sense? Thanks for any help --Kathy

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Kathy,

From healthtree:

Less than one percent of renal cell carcinomas are an unclassified type and are very rare. They don’t fit into one of the more common subtypes of RCC. When examined under a microscope, these unclassified cancer cells have a structure and genetic features that don’t match the description of the more common RCC subtypes. This category usually includes aggressive tumors that do not respond to traditional therapy for RCC.

Scary I know, but try not to read too much into that last sentence, most of the stuff you find on the internet is out dated, new therapies have been developed and/or are in the pipeline. You may also qualify for a trial, RCC has been receiving a lot of focus lately, I strongly suggest you find an oncologist that specializes in or has a lot of experience dealing with RCC.

On the lymph nodes, perhaps he said he didn't see any evidence of disease which could be a good thing.

Hang in there,

Gary

NewDay's picture
NewDay
Posts: 172
Joined: May 2012

My Urologist said there would be no additional treatment. The surgery was it. Maybe that is because it doesn't respond to therapy. But, I think I will make an appt with an Oncologist anyway. May be no point, but it can't hurt. It just feels like that if I do nothing, I'm giving in to it and not fighting. I'm trying to tell myself that grade IV and unclassified are not important since it is out... if it really is "out". I'm going to work at maintaining a positive attitude, but I still want to gather info and know the facts be they good or bad. Thank you for the info and your encouragement.

NewDay's picture
NewDay
Posts: 172
Joined: May 2012

This question came to mind when I was reading a different thread. Who is the right person to see for long-term follow-up care? Your Urologist or an Oncologist or somebody else? It seems to me that Urologists are experts at removing a kidney, but are they necessarily the best person to decide what future scans to do and watch for metastasis and make decisions on participation in trials, etc.?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

You would at least get a different perspective from within a different discipline, whether it be from an oncologist or a nephrologist. However, maybe the first thing to do is to seek further clarification from your urologist/radiologist team, now that you are fully compos mentis and have formulated some questions you'd like answered.

Given the importance of the histology, I wonder whether it might be worthwhile getting a further opinion on the pathology. It must be very unusual to have significant necrosis with no evidence of sarcomatous change in a fairly large but early stage tumour. Presumably the grade of 4 is because it's unclassifiable, which suggests that it's relatively aggressive.

I share Gary's guess about the lymph nodes - namely that none was seen that showed evidence of disease.

NewDay's picture
NewDay
Posts: 172
Joined: May 2012

Thanks Tex,

How do you get another opinion on the pathology?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Ask that another radiologist examine the slides. Good professionals approve of second opinions on matters where there is doubt, if the issue might be one of importance for the patient.

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

Let me add that in my long experience in the "medical" model, each discipline tends to focus on their area as the "primary" importance. And surgeons do surgery. Oncologists are far more concentrated on cancer. DEFINITELY see an oncologist. There are options only they may know. Let me update you on my experience as the patient.
I had my nephrectomy in march2011. Started seeing a local oncologist at our hospital cancer center until oct. 2011. At that point she said she could no longer help me.( not sure what see did anyway except give me the bad news after an october scan. At that point I had many mets in my lungs, liver, and lymph nodes. Dr. told me I would probably be dead by spring2012. So I went to a much larger hospital cancer center. I was able to pull some strings and got to see the top rated oncologist there. His response was "Good luck.". So, one more last ditch effort at Yale/New Haven Smilow cancer center. It was the only center that would do IL-2. I begged for it. ( not really expecting it to help.) But then I was offered the MDX trial if I was interested and if I qualified. The rest is history. I am alive and well. My current Dr. has told me that when I do die, it won't be from kidney cancer. I am one of the fortunate responders to this drug. The point of all this is that I was not aware of all options available to me. Not even from other oncologists. So keep up your earch and definitely find a good oncologist. Good luck! Fox.

NewDay's picture
NewDay
Posts: 172
Joined: May 2012

I hate to ask dumb questions, but how do I ask for another radiologist? Do I ask the Urologist to choose another one at the same hospital or do I ask a different doctor at another hospital to send them to their radiologist? I think this is a really good idea because my tumor would have been found in March if the radiologist had not misread my ultrasound though I don't know if 2 months would have made any difference.

So, for another dumb question, when my doc says he will do another scan in 6 months, that will actually be 8 months from the original scan. Again, I don't know if 2 months makes any difference, but I wonder if I should push for 6 months from the first scan.

One more question. My sister asked me why I care what the subtype is if the tumor is out, what difference does it make? I couldn't think of an answer other than I just want to know. Is there a reason it would be important?

fox,
thanks for the recap. It helps to know the story of the people who regularly offer support here.

Kathy

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Kathy, at risk of giving dumb answers, I'll give it a go by using your last remark to Fox as a pointer and using my own case as illustrative of the reasoning.

My view is that the sensible starting point would be discussion with your urologist, bringing up the issues you've already identified and asking for further scrutiny of the path materials by someone on the urologist's recommendation.

It would be fair enough for you to ask whether that might involve going further afield. I'm in the happy position that I'm in the care of a large multi-disciplinary team (many urologists, radiologists, oncologists, nephrologists and specialist cancer nurses) so my case is discussed at one of the regular Monday morning board meetings with inputs from the various specialties.

My situation is anomalous. I have what would be the worst prognosis conceivable but for the fact that so far no distant mets are apparent and if nothing more shows up I will be very lucky and the future will look brighter. However, I have all of the indicators of extremely aggressive disease which could metastssise anywhere and very suddenly so it's a classic example of the unenviable state of having to wait in complete uncertainty.

Therefore, the judgment is that I need very close monitoring, involving CT scans with contrast every 3 months or less and to hell with the consequences of radiation and dye exposure. (My hospital has the very latest low-emission scanners and I believe they use isotonic, non-ionic iodinated contrast dye so the risks are reduced to acceptable levels, considering the value of the information yielded.)

The reason for my close monitoring is pT4, stage 4, grade 4, predominantly sarcomatoid, extensively necrotic with one very rapid recurrence (requiring a second major open operation), so far. The de-differentiation and necrosis are both very bad signs, indicating aggressiveness. It may be fruitless to speculate on how earlier detection would have played out in your case but the unclassifiable nature of your histology is also indicative of aggressive disease. In your shoes, I would be requesting a CT scan, with contrast, sooner than currently envisaged (unless some convincing contraindication is stated).

You and I both have very rare forms of RCC where not too much is known as yet. It would be interesting to know about the relationship between de-differentiation and "unclassifiable" pathology. It's notable that you have necrosis but, apparently, no sarcomatoid features. Very mysterious. It could be helpful if more light can be thrown on the exact nature of your tumour cells.

Your Sister's question is logical. If they 'got it all' and you're cured, what it was may be unimportant. However, 'got it all' is a notoriously difficult call. You might be faced with a recurrence, like mine. In the event that that could not safely be dealt with purely by surgery, the histology could be crucial in determing the most effective adjuvant therapy. For instance, in my case - heavily sarcomatoid - the older chemo agents have a possible role that doesn't apply to non-sarcomatous RCC. It's horses for courses with drug treatments (though much has still to be learnt about which courses for which horses!). You might enjoy many healthy years and then have a 'recurrence' much later in life. Your histology now might have some informational value then. Another factor is the possibility of your having a genetic form of RCC (i.e. familial) in which case knowing about this could be relevant for your blood relatives. The platitude that 'knowledge is power' is constantly adduced in talking about RCC for good reason!

The above is just one layman's opinion but it might serve to arm you with more questions to ask your doctors.

NewDay's picture
NewDay
Posts: 172
Joined: May 2012

Hi Tex,
Aren’t we “special” with our rare cancer? I don’t remember what led up to the comment since I was such a well behaved kid, but I remember a very “proper” school teacher once saying “Young lady, you are highly irregular”. Apparently I still am. I admire your positive attitude with all the reasons you have not to be. I think I’ll come around to that. I’m just not there yet.

I had my post-op visit yesterday with the surgeon’s PA. Because of the pathology report saying that the type was “unclassified” and “possibly” invaded the renal sinus fat, I asked about getting a 2nd opinion from another pathologist. She asked the surgeon and he told her that they don’t have their own pathologists review another’s report, that I would have to go to another doctor at a different hospital and have to get the slides sent to the radiology department there. He cautioned that my insurance may not pay for it. The PA was trying to get across how fortunate I was that it was only stage 2 and had not spread. I said I wish that gave me warm fuzzies, but the unclassified + possibly invaded the renal sinus fat + grade 4 + necrosis + unintentional weight loss, from what I read, are bad signs. She agreed. She said they may not have been able to identify the type because it was growing so fast. I also asked what would have been done with the actual tissue. She said I would have had to sign a form requesting them to save it. I wish I had known that was an option. I also asked why they didn’t indicate if it might be a hereditary type and she said there was no reason to test for that. I guess they overlooked the fact that my nephew also had it. I ran into the surgeon on the way out and he said he understood my wanting to know all of these things, but that it would not change anything. Oh well. I guess that’s the end of that.

I see the Oncologist next week, which the surgeon thought was not necessary since there won’t be any additional treatment, but said it was ok. My next scan will be in December.

Now I have to focus back on the original problem with my losing weight. I can eat very little because I get full so quickly. Just a few bites and I feel stuffed. That was why I even had a CT scan and that problem is still undiagnosed. My blood tests are showing signs of malnutrition so I’ve got to do something before I just waste away. The hope was that removing the tumor might solve the problem but it didn’t.

I was wondering, if(God forbid), it was to spread to the lungs for example, and they removed it, could they test that tissue to determine the type at that time? Would that tissue be the same?

I do want to thank everyone for your encouragement and info.

Kathy

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Kathy,

I have less medical background than most on this board, but my gut reaction in reading your doctor's/nurse's reaction to a second opinion and your initial health issue (weight loss) tells me you should get a second opinion. John's doctor made it perfectly clear that if John wanted a second opinion, he would welcome it. Even our insurance company encouraged it. They made it clear that additional opinions were not limited to two. So you may want to call your insurance company.

Keep us posted and take care.

NewDay's picture
NewDay
Posts: 172
Joined: May 2012

One thing I’m struggling with is how to find a balance between having a positive, don’t worry attitude, but at the same time worrying enough about negative things to make me ask more questions, get more tests, etc. in order to be prepared for or prevent oncoming problems. For example, I’ve had doctors and nurses cheerfully telling me how I will be fine with one kidney. I know that is normally the case, but not always. My brother, who was born with only one, died at 17 from kidney failure supposedly because childhood diseases damaged it. I was told in April that I had some damage in both kidneys and together they were functioning at 58%. I’m praying that all of that was from my left kidney because if my right one was pulling any of the load, it’s gone. I don’t want to be gloom and doom and I appreciate they want to be encouraging, but if I just listened to all of the comments about how I’m going to be just fine now the tumor is out, I wouldn’t push for 2nd opinions, follow up with the nephrologist, ask for extra blood tests, etc. I would just cheerfully sit on my hands between now and my next scan and assume my other kidney is fine. As I said, it is hard to know when to focus enough on the negative so you are motivated to push for things and make sure something is not overlooked, but still maintain a positive attitude, telling yourself all of the negative stuff won’t happen and everything will be just fine.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Kathy,

As a survivor a large part of a positive attitude is the confidence that you can stare into the face of the demon, spit in its eye, and wake the next morning grateful for another day. Attack with extreme prejudice, don't just dwell on the negative, go kick its butt, you'll be surprised how good that feels. When we take action our fears begins to melt and we regain control, get a 2nd opinion and a 3rd or 4th if necessary, find a medical team that understands you in this fight to win and you won't take no or "not necessary" for an answer. We can't control the future, we can only work on the here and now and prepare so that no matter what lies ahead we are ready, we are survivors, we are warriors!

Stay strong,

Gary

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Kathy, just a thought - maybe what's needed is a subtle shift in cognitive strategy.

Our problem is in paying enough attention to the downside to head off possible problems (so far as we can) without focusing too much on the gloomier side of things.

Gary constantly counsels something along the lines of preparing for the worst but expecting the best. Another theme he keeps in front of us is to concern ourselves with what we can do to improve matters but to eschew worrying about things over which we have no control.

That's rock hard common-sense. The trick is in how to accomplish it. It's a lot easier when, like Gary, you're no longer in the thick of it and can be calm in contemplating the future, even though the future is never certain. While you're still at the front line (as patient or as carer) it's more difficult.

So, my idea is to change the mental approach to the downside possibilities. Rather than be pre-occupied with the less attractive outcomes and brood over them, focus on the positive side of what you are doing to combat them, while accepting that some aspects are 'in the hands of God alone'.

Apart from the actual value of, for example, turning up a treatment that your doctors have overlooked, there is the importance of having some sense of control over one's destiny. The evidence in the literature of the social sciences is such that the importance of that sense of participation in shaping one's future (even if, in truth, your contribution is negligible) can't be overstated. In the UK, the paternalistic character of our NHS tends to undermine a sense of control but the more enlightened medics are part of the movement towards greater active participation by patients. In the USA you can be more the boss but I guess the role of medical insurers counters that to some degree?

The idea, then is not to be mesmerised by all that can go wrong but to think more about what one is doing to improve the chances of a better outcome. Seeking second opinions is one example. Even when the previous opinion is confirmed, we then know that we have taken the positive action of verifying its validity.

Asking questions whenever we need to also yields the benefit of knowing we're leaving no stone unturned and that we're giving it our best shot. If we're running into a stone wall with our medical advisers then going elsewhere may be the best option. However, it's essential to accept that, even with the best will in the world on the part of our doctors, the answers to many questions are still unknown. In those situations it can, perhaps be therapeutic to try a bit of lateral thinking, ask more and different questions, possibly stimulating someone with more knowledge to open a new line of exploration.

In short, rather than be saddled with the thought 'X could happen', have the thought 'well, come what may, our team - me, my docs, my carers, my friends on the forums - are doing Y and Z to avoid X and to improve the chances of a better outcome'.

[Since I wrote this and tried without success to post (it's too long) I see Gary has beaten me to the punch! I hope what I'm saying is complementary to his post and not just empty repetition, but we're plainly saying much the same thing.]

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Very well stated my friend and I agree the perspective from one who is in the thick of it is of much greater value. Once again I admire your spirit and I am glad you are here even while I wish none of us were!

Texas_wedge's picture
Texas_wedge
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Joined: Nov 2011

Not, perhaps, of greater value so much as easier to identify with when you haven't yet come out at the other end of the tunnel. [However, as of a few hours ago, I'm closer to your camp Gary - clinic this afternoon confirmed pronouncement of my multi-disciplinary team that I'm now NED.]

Texas_wedge's picture
Texas_wedge
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Glad to be here Gary, in every sense, and I'm getting closer to your status - clinic this afternoon gave the pronouncement of my multi-disciplinary team that I'm now NED. Looks as though I will, at least, complete my three score years and ten in a few weeks time and, with continuing luck, my horizon may be a good deal further away!

{Post appearing above appeared to have miscarried - sorry to be so tedious.}

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

WoW! NED! Nedgie wedgie. You have made my day ol' buddy. Guess you needed more time to work on your handicap. Now don't go hitting the ball in the bushes so you can go smell the roses....they will be there for some time to come....And so our ned list continues to grow.This is great news!
Fox

NewDay's picture
NewDay
Posts: 172
Joined: May 2012

Awesome! Doing the NED dance for you.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks folks. [NEDDANCE def. - celebration of cancer survival.]

We thought summer took place in the UK the day before yesterday and wouldn't be seen for the Olympics. Yesterday in our bit of Scotland was cool, cloudy and wet. But today the sun is shining [and particularly so in my household - I'd like to ascribe the upturn in my prospects to having led a blameless life and being a perfect patient. However, I guess, in truth, it's really attributable to favourable genes and a dose of good luck with this, oh so unpredictable malaise].

Anyway, my aim now is to try to consolidate my position with continued good diet, meditation and plenty of exercise - off in an hour or so to play golf for my former home club's team against my current home club (Carnoustie) on the Championship Course at Carnoustie, in sunshine and on perfect greens!! - not a bad precursor to coming home to a greatly relieved wife, in time for TV coverage of the spectacular Olympics Opening Ceremony taking place this evening in my home town.

For those of us in the thick of battle, please remember that even for us pT4, Stage 4, Grade 4 patients, success is possible. There are many routes, including Fox's (guts and hard work) and mine (good luck) but most routes involve being prepared to learn as much as possible and to fight for oneself as the main member of the defense team. Beating "the statistics" and having plenty of good years ahead is still on, even if you have extensive mets and a lot of pain, like Fox, or sarcomatoid and necrotic histology, like me. Hang on and go for the gold!

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

I believe your NED is attributable to explanations far beyond those you note Tex. This post is your #1068 post. 1068 postings represent your reaching out to thousands by answering questions, making recommendations, interpreting results, making suggestions for future treatments, or simply educating. And that’s just on this board—phenomenal!

I strongly believe that when you’re hit with a devastating diagnosis, you are immediately a part of a bigger galaxy. It calls attention to some aspect of your life that needs attention. Your health obviously is one area, but I believe it extends beyond the physical, something even deeper. Perhaps your diagnosis is a way to draw attention to something you have neglected in your life or to your unshared gifts/talents that would have a positive impact on others. And I believe how you respond to that bigger picture can dramatically influence your outcome. By reaching out to others who are confused, lost and feeling alone HEALS YOU. It fills the emptiness of soul that we all feel from time to time when giving back is not a routine part of our life. I’m not saying that you haven’t given back in your life; I’m just saying it’s evident to me and many others on this board that you were needed here and you responded.

I believe your NED reflects your gift to the many out there—myself included-- that have benefitted from your wisdom, your compassion, your patience, your humor and your shoulder.

You follow in the footsteps of big shoes on this board, those of Iceman, Gary, Liz, Fox, and many others who know who they are. As a beneficiary of all you’ve given, I thank you from the bottom of my heart. And my congratulations on a very much deserved NED!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Thank you Alice, that's very charming and gracious. I'm feeling a bit low at the moment so your message was very welcome.

vdm13
Posts: 35
Joined: Jul 2012

Tex,

If it helps, your story inspires me. Woke up in the dumps this morning and am fighting my way back. This helped. Keep it up, for yourself and the rest of us!

Vin

NewDay's picture
NewDay
Posts: 172
Joined: May 2012

Hi Tex,

I ditto everything Alice said. The last few weeks I have often felt frightened, confused, depressed, angry, etc. and you have helped to calm, reassure, inform, and inspire me. I always look forward to your posts. I'm sorry that you are having a down day. At the risk of sounding trite, remember that it will pass and tomorrow is a new day. Feel better.

Kathy

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

My thanks to Vin and Mike (on another thread) for your good wishes.

In the last few days I've been on an interview panel to appoint a project worker whose role will be to recruit and train citizen advocates and match them to vulnerable individuals. The people whose interests we endeavour to serve have very apparent needs. It's a totally different matter with many of us. The very fact of our being on forums such as this is testimony to our being articulate and directed, even if we sometimes feel we aren't! However, when it comes to dealing with RCC we are not so different from my organisation's independent advocacy clients.

There are two reasons. One is the perpetual problem of having to deal with the 'gods in white coats', not all of whom are good communicators. The other problem is the preternatural complexity of RCC which is an obstacle not only to our own understanding but also that of our medics, who are often equally out of their depth in this particular quagmire. Consequently, we have to be aware that we need to be our own advocates.

Fox is an icon for his superb attitude, his endurance and his well-merited success in the trial he is in but our cheering for his progress shouldn't distract us from an important message he has for us, which may be even more valuable - about being one's own advocate.

On Friday, in his message above headed "another opinion", he gave some useful advice but then said:

"The point of all this is that I was not aware of all options available to me. Not even from other oncologists. So keep up your [s]earch".

His doggedness in not giving up and leaving no stone unturned is why he's been able to show us the way. If he'd acquiesced in the defeatist attitude of his doctors he'd probably have been dead by now. He kept looking out for himself and he found what he needed when none of his docs had found it for him.

So to you, Kathy, I say this is the time to keep asking all the questions you need to. Happily, you're not in the position Fox was in but there are answers I'd want to get. You told us

"I ran into the surgeon on the way out and he said he understood my wanting to know all of these things, but that it would not change anything. Oh well. I guess that’s the end of that."

I can understand that the social situation was one in which you couldn't pursue your questions at that point. However, I think there's a lot of difference between an expert saying 'For what it's worth, the answer is X but it won't change anything because of A, B and C.' as opposed to that expert saying 'It wouldn't make any difference, so I'm not going to answer your question(s).'

You are concerned about rate of growth of a possible recurrence. It can be very fast. (Between my neph. in December and a scan at end of February, my second tumour had developed from invisible (and therefore undetected) to 1cm. and in another 4 weeks to a hard nodule of 2.5cm.) But, I can't believe that your upcoming US scan is to look for anything RCC-related just a couple of weeks after your op.

I'm guessing it's to investigate your malabsorption mystery. There's a mind-blowingly complicated relationship between the immune system and the absorption and processing of food. You've been taken off meds, doubtless because of queries about your kidney and liver functions but I'd bet that those functions haven't been compromised by your surgery, but by the absorption problem that needs to be solved and which I suspect accounts for your earlier unexplained weight loss.

In your situation, I'd be wanting to stay on top of the investigation and ask for the most thorough explanations it's possible to get from your docs so you have the clearest possible picture of what you're dealing with. Let's hope it turns out to be a simple matter that can be easily sorted and puts you on the road to normal eating and a full and speedy recovery from your surgery. I hope you get some good news out of your appointment tomorrow.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

T,

Been gone for a few days, you can't imagine my joy at learning of your NED, tears are actually rolling down my cheeks! Your continued battle and dedication to helping others has inspired so many here, your outcome is well deserved.

Just one of life's triple bogies after all,

Gary

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Dressed like that and calling me a ned!!!

Still, glad to have you back Gary ;-)

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

It's a bit cruel to go from 'NED' to nearly dead in 9 weeks. (Must be some kind of record and, if so, I hope no-one else breaks it.) Just shows how rash it is to be complacent with the sneaky disease.

NewDay's picture
NewDay
Posts: 172
Joined: May 2012

Tex,

I wish I had some magic words of wisdom or encouragement for you. I'm sure this must be discouraging and emotionally draining for you and your wife. Lest you should be tempted to throw in the towel, I will remind you of the advice you gave me earlier. Referring to Fox, you said

"His doggedness in not giving up and leaving no stone unturned is why he's been able to show us the way. If he'd acquiesced in the defeatist attitude of his doctors he'd probably have been dead by now. He kept looking out for himself and he found what he needed when none of his docs had found it for him."

I know you know this, but I am praying for you and just can't imagine you not being here. I refuse to let my thoughts go there. Keep fighting the fight.

Kathy

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks, Kathy, will do. (Posted this 12 hours ago but evidently it miscarried.)

You've done well Mike. I don't know that I'll want to swear off the pain meds. completely. To the extent that they enable me to continue with accustomed levels of activity unabated, I think they'll serve a worthwhile purpose. Had a great day at the Dunhill Links Tournament today, although 5 1/2 hours is a bit much for a round (the 4-ball I was accompanying got held up a bit by the game in front, where Dan Quayle was somewhat slow - but of course he under-studied doing that!).

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

the meds i took were for deppresion but now i am not taking any meds,you are a thin man in good physical condition,mind if i ask why do you feel the need for pain meds

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

No great mystery Mike. I have an extremely aggressive new tumour (grew from 0 to 2.5 cm in 3 months and then to 5 cm in a further 3 weeks and that was 9 days ago, so who knows what size it is now? It's invaded my abdominal muscles and is becoming steadily more painful.

adman's picture
adman
Posts: 260
Joined: Jul 2012

Not sure how to express my appreciation for the support you've showed me. You are in my prayers.

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

Man, I wish that I could do something to help. Sometimes golf and jokes aren't always that important. Do whats right. You are well informed, and will know what to do.

ClaraW
Posts: 64
Joined: Jun 2012

Just wondering if you've come across this article(case reports).
18 patients with advanced sarcomatoid renal cell cancer treated with a regimen consisting of doxorubicin, 50 mg/m2 and gemcitabine, 1,500-2,000 mg/m2, administered every two weeks with growth factor support (A/G). Result: two complete responders are alive, disease free at 6+ and 8+ years. 5 partial responses and two patients with stable disease of more than 6 months of duration.
Ref: Long-term survival of patients with sarcomatoid renal cell cancer treated with chemotherapy.
Dutcher JP. Nanus D.
Medical Oncology. 28(4):1530-3, 2011 Dec.
Let me know if you'd like to read the full text.

ClaraW
Posts: 64
Joined: Jun 2012

Safety and activity of sorafenib in different histotypes of advanced renal cell carcinoma.
Procopio G. Verzoni E. Gevorgyan A. Mancin M. Pusceddu S. Catena L. Platania M. Guadalupi V. Martinetti A. Bajetta E.
Oncology. 73(3-4):204-9, 2007.
CONCLUSIONS: The results confirm previous ones reported in the literature concerning the efficacy and the safety of sorafenib as second-line treatment in patients with RCC. In addition, they disclose the hypothesis that sorafenib could be effective also in patients who underwent multiple previous treatments and in those with histology different from clear cells such as papillary, chromophobe, Bellini ducts, sarcomatoid and mixed forms

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

Their are times in our lives when things can happen to us or people we care about that can have a profound effect on us that can last the rest of our lives,well this is one of those times.Texas when i first read this latest post from you it left me speechless and worried for you,i hope so very much that something can be done to rid this tumor from your body

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

Not sure whats going on with you and of course i hope every thing is fine with you,i guess i can assume you are being challenged again.Like i have said before this disease will sneak up on you and sucker punch you,i know i have been there and ican remember you suggesting that i keep my chin up.There were a few weeks back in april and may of this year i needed valiums in order to cope with my situation but then i decided not to let this disease cause me to live in fear and anguish so by june i had thrown those pills away and since then i have held my chin up.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

adman, Fox, Clara, Mike - thank you all for your kind words which are much appreciated, not least by my Daughter (who 'phoned tonight to tell me she loves me, just in case things move rapidly in the wrong directon) who looks at these threads occasionally.

Clara, thanks for the links and yes, I really would like the full text of Jan Dutcher's recent paper.

ClaraW
Posts: 64
Joined: Jun 2012

I've just sent you a PM

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

Tex, I am devastated to know that you are back in the boat with so many of us. It is so disappointing after such good news and progress. Your attitude and knowledge will carry you far and as you always remind us, positive thoughts make us well. Your invitation to Atlanta still stands of course. Even just to change your scenery if necessary. Autumn is a beautiful time in the states. Take care of yourself first and foremost. Hugs, prayers, and light sent to you from me.

xoPaula

I am alive
Posts: 220
Joined: Jul 2012

Tex,
I'm so sorry you're in such a tight spot. Sending prayers and light your way. Pax.

NewDay's picture
NewDay
Posts: 172
Joined: May 2012

Hi Tex,

Just stopping by to say I think of you often. If only my thinking of you would help your situation somehow. I really like your pics. It is cool that, now when I think of you, I have a mental picture. Sorry you ever had to join this club, but glad you are here. I can't imagine what it was like before you joined and definitely don't want to find out. I hope you feel bouyed up by all of the prayers and positive thoughts sent by everyone here. Hang in there.

Kathy

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks for your kind sentiments Kathy.

These forums do seem to have enormous value, both in sharing experience and information and in reciprocal support. I do, indeed, draw benefit from contact with all my friends here and I'm sure many of us would have a tougher time without this community which strengthens all our spirits.

Your other pic of you and Checkers has been appreciated and Rae has some nice shots on her expressions page. Her shot of the Michigan shoreline is appealing but puzzled me - it looked so familiar and then I realised it looks very much like a spot on the coast of the Cape in South Africa but I guess that sort of wooden walkway can be found in quite a few places!

As for hanging in - depend on it! Next thing I want to investigate is how close a lifestyle to their previous lives people can manage to maintain when on RCC drugs - e.g. whether those on Sutent can play golf if they have bad hand/foot syndrome! We get glimpses of this but most of us understandably shy away from detailing the impact it has on our lives.

ClaraW
Posts: 64
Joined: Jun 2012

Hey TW,
Just wondering if you had a chance to skim through those articles. If you need any other articles, please let me know :)

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Want to study them and haven't had enough time yet. Last day of attending big court case today, then dentist and oncologist tomorrow. Will respond asap.

ClaraW
Posts: 64
Joined: Jun 2012

I justed wanted to know that I've sent them to the correct email address that's all. No need to read them asap! But I do hope you see your oncologist and get a treatment plan asap :) All the best dear TW for this Friday. Will you thinking if you!
Best wishes, always.

NewDay's picture
NewDay
Posts: 172
Joined: May 2012

Hello everyone,

I saw my Oncologist last week. I asked if my December scans could be MRI instead of CT since I can't have contrast (my last creatinine reading was 1.8). He said "hhmmmmmmm, that's a lot of magnet." and motioned with his hands above and below the area to be scanned. He said we should stick with CT and decide whether to do contrast based on that day's blood work. Well, it still came back 1.8 even though I worked hard to be well hydrated. I've never heard that MRI's could be harmful unless you had metal somewhere. I know MRI's are move expensive and I don't know if my insurance company would approve it, but I might push for it except that the doc doesn't seem to want to do it.

Next question: A lot of numbers came back flagged as low and high based on the ranges used by the lab. The nurse says they are close to my last numbers so they consider me stable. Granted the numbers aren't real low, but they have dropped. Do I need to question this more or assume it's OK to ignore?

Any opinions on either issue?

Kathy

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

Let me address the creatinine,after my right nephrectomy in 10/04/11 my creatinine stayed around 1.4 until a tumor was found on my left kidney after having RFA performed on 05/02/12 my creatinine went up to 1.8 but on my last check on 09/21/12 my creatinine improved to 1.5 so my advice is keep drinking plenty of fluids and in time you should see some improvement.I think Tex can advise you on the CT scan i believe there is a procedure where they do both a PET scan and a CT scan the same day then compare the two at the same time to get a more acurate account as what is going on. Good Luck

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Kathy, could you re-cap the salient points on your contrast problem? I'm thinking of kidney function parameters, reaction, co-morbidities, etc. How is your weight now and your general physical performance level?

Perhaps you should tackle your onc on the topics of how real (and, if so, how great) the risk is from contrast. You and I have very aggressive cancers and the importance of keeping tabs on them would over-ride anything less than serious risks from the dye. You could enquire about 1/2 dose contrast, iv saline and whether orally taken contrast might be a tolerable alternative to infused.

If MedScanMan picks this up, you'll get really useful guidance. Meanwhile, keep the chin up.

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