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RCC Chromophobe

jnizzi
Posts: 16
Joined: May 2010

Has anyone on this board been diagnosed with this type of RCC? I am curious if surgery cured it and if it came back?

Thanks!

auburn1
Posts: 5
Joined: Jul 2010

Hi, yes, I was diagnosed with stage II, grade 3 Chromophobe on June 28. It was completely contained in my right kidney. My kidney was removed on the June 21. It was considered a surgical cure and that I was very lucky. I, of course, have had a range of emotions over the past 4 weeks (symptoms began on the 9th of June). And I am scared it will come back. I am 33 and am in perfect health otherwise (other than OCD which doesn't help:) I hope this finds you well.

Wendymarkus
Posts: 3
Joined: May 2010

I was found to have a 14 cm kidney tumor and had a radical nephrectomy in march. My pathology showed chromophobe subtype, which is quite rare, only 2 - 5% of all RCC's. The good news is, it is much less aggressive than the other subtypes, and extremely slow- growing. The most important thing you need to do is get the routine follow-up scans. My doctor wants me to have PET scans & non-contrast CT scans every 6 months for 5 years. If anything recurs, which I pray everyday it does not, then treatment is surgical removal.

loriks
Posts: 1
Joined: Jul 2010

I had a laproscopic nephrectomy in March and also chromophobe. I had a 3.5 cm tumor, Grade 2-Stage 1. It is considered a cure-but who knows. I have a 3 month check in early August. It was found incidentally which I am very thankful for.

I stayed home off of work for 7 weeks. Moved slowly but feel good now.

amnesiachick
Posts: 1
Joined: Feb 2011

My Dad had a rather large RCC Chromophobe tumor (I cannot remember the exact size) in his kidney and had it removed in 2008. They checked on him every 6 months for any recurrence. I am sad to say that the first of January 2011, we learned that he now has 4 tumors that have spread (all RCC Chromophobe). He's currently getting radiation and taking Sunitinib. He has a small one near his spine, a large one encasing one rib, and another near his shoulder blade, and one other that I can't at the moment remember where it is. They are beginning treatment to the one by his spine in order to prevent paralysis. Then, moving on to the largest one encasing a rib. I try to remember this is a slow moving cancer and am praying for the best.

Hope all goes well for you, too!!

Cassie

BG
Posts: 85
Joined: Jun 2011

I just recieved my pathology report last week, chromophobe stage I grade 2 at 3.9 cm. As there is not information on this subtype I am trying to get an oncologist referral to get more information.

BG

jona187's picture
jona187
Posts: 74
Joined: Apr 2011

If you im me with your email, I can forward you some reports about chromophobe i got from acor.org

BG
Posts: 85
Joined: Jun 2011

Thank you Jona187,

My email is brentharpham@yahoo.com

Take care, and I wish you, your wife, and family the best.

Brent

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jona187
Posts: 74
Joined: Apr 2011

sent from my gmail acct.

wufmew's picture
wufmew
Posts: 5
Joined: Jan 2012

I have Chromophobe and had a metastasis to my lymph node at the time of surgery. I had scans every 6 months and it was confirmed that it recurred a year and a half later on my liver and in my femur and skull and now spine. My chromophobe is very fast growing.

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

I can't tell you how sorry I am to read that you're having it so tough. Can you remind us of your original pathology? Since chromophobe is normally the most indolent form I can only suppose that your tumour histology turned sarcomatoid at an early stage, to develop and metastasise so quickly.

It's known that chromophobe is not only slow-growing but also that it seldom metastasises. The downside is that it is more disposed to turn sarcomatoid than the other sub-types are. The classic form (mainly pale-cell, known as 'classic' chromophobe, as against the eosinophilic form) is associated with sarcomatoid transformation and necrosis. Does your path. show sarcomatous change and/or necrosis?

Progress is now rapid in finding new treatments for RCC so buying more time is well worth while and I hope Torisel has bought you an extra stretch. The one brighter spot is that the sarcomatoid de-differentiation seems to make RCC more vulnerable to attack by the older chemo-based treatments (doxorubicin, gemcitabine etc) and these are now being tried out in combination with the newer targeted therapies e.g. sunitinib + gemcitabine.

Have you tried Gerald White's MAARS program, or TM, or Mindfulness Meditation? As a teacher, you would doubtless take readily to the excellent book by the late David Servan-Schreiber "anticancer". I dare say you've come across the milestone Steve Dunn website and the invaluable paper by Stephen Jay Gould - "The Median isn't the Message". These approaches, coupled with your supportive Husband and Family will do a lot to boost the benefits of the medical treatment.

Do keep in touch here and remember we're all rooting for you to pull through this to a long happy life.

myboys2's picture
myboys2
Posts: 50
Joined: Nov 2011

My son has mucinous tubular and spindle RCC which is supposed to parallel Chrom RCC. He is currently trying IL2 on his second week. He has had is left kidney removed, several skull mets radiated or removed replaced w titanium, and he has 3 small liver mets. The liver mets are the goal to tackle with the IL2. We also have hip and femur. But, we have not had any new evidence of disease since our original diagnosis. I was wondering what the treatment will be for your disease? I have studied some of the chemo regimes for this variant and it can be very successful which will be my next question if the IL2 is not successful. Thanks for you thoughts Gail N mother of Cody 21.

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

I'm not sure who you were addressing your question to, Gail.

Assuming it's wufmew, she has moved from Sutent on to Torisel and I hope she'll keep us posted on how she's doing and that she will draw extra support from us.

For me there's 'no standard treatment'. So, I'm hoping surgery has done the job. Dr. Dutcher told me that, failing surgery, her regimen for sarcomatoid would be chemotherapy. Being with her, you are in the hands of one of the world's greatest experts on rare sub-types of RCC.

myboys2's picture
myboys2
Posts: 50
Joined: Nov 2011

I am also hoping she will stay in touch and tell us her treatments and progress. We just just today leaving after our second week of IL2. We got 9 doses the week of 6/11 and 10 doses the week of 7/2. We believe that Dr Dutcher is the best. I do often wonder about chemo. We only had a <10% sarc and I have seen some folks find NED with it. So I guess now we just wait and see. Thanks for you feedback Texas_wedge I always welcome your input.

Shan_39
Posts: 17
Joined: Apr 2012

I had a right radical nephrectomy on March 1,2012, and the pathology report came back as Chromophobe. I just had my 3 month scan and it came back with the all clear.

Shannon

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robert_douglas_smith
Posts: 84
Joined: Oct 2011

The first of September 2011 I had been having sinus problems and was scheduled for surgery the 5th of Sept. The week before I did all the surgery pre-labs and chest x-rays for the surgery. This surgery was done as an out-patient. When we were about to leave the hospital the ENT doctor mentioned that the chest x-ray showed some areas of concern and I should have a CT scan done of my chest. So while recovering from the sinus surgery, we had the CT scan done. A few days later my primary care doctor’s office called and told me that there were 3 small spots on lungs, but were so small that they were of no concern. But this scan caught a part of my abdomen and there was a concern of one of my kidneys. So we scheduled another CT of the abdomen. A few day later my phone rang and rather than on of the doctors nurses on the phone it was my doctor. He told me that the CT scan showed a 6.7cm mass in my left kidney and he would schedule me with a urologist. And he thought that I would have to have a laproscopic nephrectomy. On the 10th of October we had made a two page list of questions for the urologist and his recommendation was the same as my family doctor, a total nephrectomy of my left kidney. On Tuesday Oct. the 25th I went into the Rockdale hospital and had laproscopic nephrectomy surgery. My Urologist thinks all of mass was contained in kidney. The type of cancer is multifocal chromophobe renal cell carcinoma. My first post op cat scan was clear, the second 3 months later showed a 2 cm. mass on my right kidney. My urologist referred me to the radiology department at St. Joseph’s Hospital in Atlanta for a Cryoablation procedure on the mass. My doctors, wife and I decided that this is the least evasive procedure to preserve my remaining kidney. This procedure destroys less of the functioning kidney tissue. On May 16th they froze a 2.7cm. tumor. Last Fridays June 29th follow-up visit at St. Josephs Hospital was with mixed feelings. The CAT scan confirmed the Cryoablation (freezing) of the tumor last month was successful, it is gone!! But the CAT scan also showed 2 more masses that are approximately 1 cm each. We will go and have those suckers frozen too on July 20th. My radiologist will be my best friend for quite a while.

Pattie1
Posts: 1
Joined: Oct 2012

I hope this finds you in good health and doing great. I'm responding to your post because I also have chromophone renal cell carcinoma, and like you, I had it in both kidneys. They were diagnosed at the same time but because I also had infiltrating lobular breast cancer, they did a partial nephrectomy of my left kidney in December 2010 and waited to do a partial nephrectomy of my right kidney the following September. To date, my breast cancer is in remission. Since I haven't been able to have scans done with contrast because of poor kidney function, my surgeon isn't sure whether there are any new tumors. There are a couple of spots on the remainder of my left kidney but they haven't changed in a year, so I'm feeling pretty confident that they're not cancerous tumors. My greater concern is dialysis and possibly a transplant. I'm just above dialysis stage right now, and although I've changed my diet dramatically, it's still very likey that I'll be on dialysis sometime in the near future. In fact, my nephrologist has referred me to a transplant specialist so we can begin making difficult decisions if it should come to that. I continue to work full time and feel great. I'm optimistic for the future but still feeling a little cautious.

swijak
Posts: 13
Joined: Jan 2011

I was diagnosed in December 2010 with a 10cm Chromophobe RCC on my left kidney and had a laparoscopic radical nephrectomy. My first couple scans have been clear but last week my routine chest x-ray turned up some multi-node goiters on my Thyroid. I’m still waiting to find out if it is cancer (or not)…

I am alive
Posts: 221
Joined: Jul 2012

Eight years ago an 11cm tumor was discovered in my right kidney. After the nephrectomy I was diagnosed with chromophobe kidney cancer. The tumor was contained within the kidney. I had clear MRIs every six months for three years. At the suggestion of my then urologist I waited a full year before having another MRI and wouldn't you know it - three cancerous lymph nodes had grown between my aorta and vena cava. (I regret waiting that year between MRIs - I could have insisted on the test at six months, but I didn't. Note to self: Speak up!) Happily I found a surgeon who felt confident he could do the tricky operation - a retroperitoneal lymph node dissection - and it was successful! Three years later a small lesion appeared on my L1 vertebrae and that was successfully treated with one session of targeted radiation therapy. That was in January. Since then the CAT scans have shown two tiny cancerous growths deep within my right groin area, and another deep within the chest. My oncologist at Memorial Sloan Kettering Hospital in New York City has started me on a clinical drug trial specifically targeting the very rare non clear cell renal carcinomas of which chromophobe is one. Every day I take an Affinitor pill (also known as Everolimus) and every two weeks I travel to NYC for a 20-minute infusion of Avastin (also known as Bevacizumab). So far I've gone through two rounds,been about a month. I feel great and I am incredibly grateful to have found my oncologist and this unique drug trial. I don't know yet if the drug combination is working its magic - a CAT scan down the road will determine that. But I am thrilled to be participating in the trial. At this point I'm amazed that I'm eight years out. I try not to think too much about that, or too far ahead into the future. But overall, I'm pretty optimistic. Stay positive. There are plenty of reasons to be that way. And good luck!

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

I am alive, would you care to tell us your age, gender, stage, grade and whether your histology featured sarcomatous change and/or necrosis? Does your lifestyle involve high risk factors (e.g. smoking, surplus weight, hypertension etc)? We've seen above, on this thread, that chromophobe doesn't always follow the vaunted pattern of indolent growth with no metastasis! Have your recurrences all been confirmed as chromophobe?

Glad to hear how well you're feeling and hoping that the Everolimus/Bevacizumab combo is going to pay dividends.

May I also ask who the surgeon was who did the retroperitoneal lymph node resections?

Presumably the reason for the earlier MRIs was fear of excessive radiation exposure with the older CT technology and now that fear has dimished with the latest scanners?

I am alive
Posts: 221
Joined: Jul 2012

Texas_wedge,

The wonderful surgeon who performed my retroperitoneal lymph node (RPLND)dissection was Dr. Michael Scheinfeld at Memorial Sloan-Kettering. Because he does a lot of testicular cancer surgery he is extremely well versed in maneuvering up in that aorta/vena cava area. In addition to my three cancerous lymph nodes he removed 30 others "to buy me time." Following surgery I enjoyed three happy years without recurrence. Now these hot spots are popping up. My oncologist says these current cancers - millimeters in size, and thankfully none near a vital organ - have probably been in my body since before the 11cm tumor was discovered eight years ago. The original tumor was, I think, Stage 1 because it was fully contained within the kidney, or possibly it was upped to Stage 2 because of the size of the tumor. I don't remember the grade, but there was mention of necrosis. Do you know what that means? The nodes removed in the RPLND surgery were chromophobe. I don't know why my original urologist, who performed the nephrectomy, preferred MRIs. But when I moved over to Sloan-Kettering with the first recurrence I was told the CT scans give better pictures of soft tissue.

I was 52 when first diagnosed - a petite woman with a 12-year-old who could probably lose 8 to 10 pounds. Smoked a bit in my 20s - when I was on deadline or otherwise stressed, but never smoked outside of work and rarely actually bought a pack of cigarettes.I was the co-worker who bummed butts. I quit entirely by my mid-30s. Not a big drinker - wine with dinner kind of thing. No family history of kidney cancer, but lots of other kinds of cancers within my parents' families. I have no hypertension or any other medical ailments. The blessing throughout this ordeal is that I have always felt great. "Cancer? What do you mean I have cancer? Is this some kind of joke?" I felt great before the nephrectomy. Bounced back quickly after the surgery. Great when wheeled into the operating room for the RPLND. (Well actually I WALKED into the operating room - something they do at Sloan-Kettering.) Recovered quickly from that surgery. Continued to feel great after the one-shot image-guided targeted radiation on my L1 vertebrae, no side affects. And I feel great now, even though three new enemy campsites have established themselves in my body.

For the first seven years after diagnosis I never went on the Internet to troll for info. (My husband shouldered that responsibility.) That helped me to "stay in the light" and not dwell on dark potentialities. But now that the cancer has come back three times, and my oncologist has told me that it will probably keep recurring, I feel differently. I so appreciate the brother/sisterhood your forum offers. It's an excellent place to gather real information and give & take support. We're all in this place we don't want to be and there's nothing we can do about it, except carry on. And choose to be happy.

I am alive
Posts: 221
Joined: Jul 2012

Texas_wedge,

The wonderful surgeon who performed my retroperitoneal lymph node (RPLND)dissection was Dr. Michael Scheinfeld at Memorial Sloan-Kettering. Because he does a lot of testicular cancer surgery he is extremely well versed in maneuvering up in that aorta/vena cava area. In addition to my three cancerous lymph nodes he removed 30 others "to buy me time." Following surgery I enjoyed three happy years without recurrence. Now these hot spots are popping up. My oncologist says these current cancers - millimeters in size, and thankfully none near a vital organ - have probably been in my body since before the 11cm tumor was discovered eight years ago. The original tumor was, I think, Stage 1 because it was fully contained within the kidney, or possibly it was upped to Stage 2 because of the size of the tumor. I don't remember the grade, but there was mention of necrosis. Do you know what that means? The nodes removed in the RPLND surgery were chromophobe. I don't know why my original urologist, who performed the nephrectomy, preferred MRIs. But when I moved over to Sloan-Kettering with the first recurrence I was told the CT scans give better pictures of soft tissue.

I was 52 when first diagnosed - a petite woman with a 12-year-old who could probably lose 8 to 10 pounds. Smoked a bit in my 20s - when I was on deadline or otherwise stressed, but never smoked outside of work and rarely actually bought a pack of cigarettes.I was the co-worker who bummed butts. I quit entirely by my mid-30s. Not a big drinker - wine with dinner kind of thing. No family history of kidney cancer, but lots of other kinds of cancers within my parents' families. I have no hypertension or any other medical ailments. The blessing throughout this ordeal is that I have always felt great. "Cancer? What do you mean I have cancer? Is this some kind of joke?" I felt great before the nephrectomy. Bounced back quickly after the surgery. Great when wheeled into the operating room for the RPLND. (Well actually I WALKED into the operating room - something they do at Sloan-Kettering.) Recovered quickly from that surgery. Continued to feel great after the one-shot image-guided targeted radiation on my L1 vertebrae, no side affects. And I feel great now, even though three new enemy campsites have established themselves in my body.

For the first seven years after diagnosis I never went on the Internet to troll for info. (My husband shouldered that responsibility.) That helped me to "stay in the light" and not dwell on dark potentialities. But now that the cancer has come back three times, and my oncologist has told me that it will probably keep recurring, I feel differently. I so appreciate the brother/sisterhood your forum offers. It's an excellent place to gather real information and give & take support. We're all in this place we don't want to be and there's nothing we can do about it, except carry on. And choose to be happy.

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

A good question. I'd hoped to make an educated guess with a little more data. I would have guessed you'd have been about stage 3 at dx, at 11cm but no mets. I wondered about a higher grade because of the recurrences. Are the lesions subsequent to the RPLND known, for sure, to be RCC? The presence of necrosis (areas of dead matter) often denotes an aggressive growth in which the tumour has outpaced its own blood supply and thus killed that region. There are distinctive patterns of necrosis, peculiar to particular types of tumour.

I suspected that your chromophobe histology had, like mine, turned sarcomatoid, since chRCC doesn't generally metastasise. It occurs to me that 8 years ago there might have been less likelihood of commenting on a small sarcomatous change (or, indeed, of even spotting it). The fact that your onc predicts continuing recurrences makes me feel certain that you have a sarcomatoid component. If so, the fact that you have done so well for 8 years and are still feeling great is very encouraging. (In fact it's quite cheering for me since my histology is now mostly sarcomatoid and in the next few weeks I'll discover whether I'm going to need a RPLND, if it's possible - I'm told it's so deep they might not want to even attempt it, in which event I might be joining you for cocktails!!).

Like you, I'm feeling great, practically all of the time. Perhaps that's the good fortune of having chRCC which progresses more slowly and accordingly spreads less quickly, maybe even if it has gone sarcomatoid? That would be nice, were it true!

I am alive
Posts: 221
Joined: Jul 2012

Texas_wedge,
I'm sorry you're dealing with mets and facing a possible RPLND. I was told that my RPLND was also a touch and go thing - they didn't know if it could be done b/c the lesions on the lymph nodes were so close to the aorta and vena cava. I was sent to Scheinfeld b/c I was told if anyone can do it it would be him, that that kind of surgery was all he did, mostly on young men whose testicular cancer had metastasized as that area is the most common place for testicular mets. Indeed, when we went to Fox Chase in Philadelphia for a second opinion their oncologist actually said to us "If you can get Michael Scheinfeld to do your surgery that's what you want. He trained our guys." Scheinfeld said the surgery wasn't without risk, but he felt confident he could do it. The surgery was difficult enough that they decided they wanted to do a needle biopsy first, even though that carried its own risks. The biopsy confirmed the chromophobe and they went ahead. My last two mets in the L1 vertebrae and groin area have not been confirmed as RCC but at this point, according to my onc, if it walks like a duck, etc. I'll have to ask him about the sarcomadtoid possibility when I see him next week. He hasn't mentioned it thus far. A possible bright side: I think I read somewhere that sarcomatoid chromophobe responds better than plain old chromophobe to drug therapy. Not sure about that though.
As for chromophobe not metastasizing, back 8 years ago my urologist told me that 2/3s of his patients with my type of tumor did not metastasize, but 1/3 did. I got the short stick. When were you first diagnosed? And when did your first mets appear? As for continually feeling great, I guess that is a large gift from chRCC. Glad to have it.

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

I'll find out in a few weeks time, after next CT, whether the enlarged nodes are a problem or not. If so, I suspect they might consider surgery too tricky and it's a bit too deep for radiotherapy.

By the way, your recollection is correct - sarcomatoid change opens the cancer up to greater effectiveness of the older chemotherapy agents such as gemcitabine and doxorubicin but the compromise of one's immune system by cytotoxics is unattractive.

Your urologist's data are interesting. My dx followed CT with contrast on 13th October past. Radical Nephrectomy Dec 5th. Scan 29th Feb showed a 'recurrence' that may have truly been a leftover rather than a true recurrence but was labelled as 'metastatic' anyway. So, second op (utilising original 10 inch incision) at end of March. Subsequent scan showed slightly enlarged RPLNs which is what we're watching - all else fine. Latest blood test results all good.

I began to feel a little anxious with abdominal pains and backache a few days ago but plenty of golf, walking and rowing have sorted that out (did a good hard 10,000 metres rowing this afternoon and am getting my 5k and 10k times back to respectable levels - our bonus for having chRCC?).

Keep well.

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

I am alive,

Stories like yours are so important to this board, you are a real fighter, a warrior and an inspiration! Your optimism and positive attitude are contagious, please continue to share your experiences as you bring hope to many others.

Rock on,

Gary

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

And you have quite a story to tell.

I LOVE the fact that even though your journey hasn't been perfect(MRI delay), you emit no negative anger, pity, resentment. You sound completely at ease with your medical staff and are appreciative of what they've done and continue to do for you. I feel certain your optimism, confidence, and gratitude is playing a huge role in your success. You are an inspiration to all of us reading your trials. Please keep posting.

I am alive
Posts: 221
Joined: Jul 2012

Thumbs up for my second CT since starting the non clear cell trial of everolimus (Afinitor) and bevacizumab (Avastin). Results show stable disease. First CT at 8 wks showed diminishment of one node, stability in another, and the third, which was necrotic, had just about resolved itself. A speck,, perhaps residual, is all that's left of that one. Starting cycle 5 in time to enjoy the holidays. Fingers crossed.

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

Excellent news Peg. I'll also be crossing my fingers for you. Didn't realise you are a fellow 'red-head' too (I still have red hair, just not on my head!).

Do you have any informal indications of how others are doing on your trial? I'll be seeing my onc on Friday but it'll be in December that I get my next CT scan.

I am alive
Posts: 221
Joined: Jul 2012

From what I can gather, generally speaking, overall, the docs are pleased with what they are seeing in the trial. They do not get into specifics about other patients and never mention them unless I ask. I always ask how I'm doing in comparison but I dont really get a direct answer. I understand that. If someone else is doing great and you're not, you feel deflated. If you are doing great, the docs know that that can change without warning. They want to keep us on an even keel. Again and again I am told that everyone's cancer is different. And who knows how much our own psyches play into things? It's that Zen trick that we must all become masters of - living in the Now without judgments or fears, open to it all, like riding a wave.

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

I have to say how whole-heartedly I endorse your analysis, at every point.

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angec
Posts: 622
Joined: Mar 2012

That is great I Am Alive... so happy it is working out for you. What does of Afinitor are you on? I suppose there are no side affects since you say you are feeling great. We go to the onc today and after his visit we will all sit with mom and prepare her to be dragged to sloans to hopefully see Dr. Motzer. We have to do that and get it done. Keep up the good results..

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angec
Posts: 622
Joined: Mar 2012

Also forgot to ask. Does Affinitor have chemo in it? Thanks... Hope you have a great week!

I am alive
Posts: 221
Joined: Jul 2012

Two thumbs up for my 4th CT since beginning the nonclear cell clinical trial of Everolimus/Afinitor and Bevacizumab/Avastin. Results today showed continued diminishment of one met in the right groin, and stability in the other.  A bit of the thoracic met that has all but disappeared  remains visible. Some ground glass opacities in the lungs have disappeared while others remain stable and some new opacities have appeared. The opacities are a drug side effect. I remain mostly asymptomatic, able to walk miles and jog up and down the sthave. A recent MRI of the spine showed the beginnings of a compression fracture oN the L1 vertebra, in the area that was treated a year ago with image guided radiation. No lifting anything over 20 pds, careful bending forward to lift anything, I must be extra careful not to fall.Followup MRI in a month or so. On a scale of 1-10 the "pain" from the fracture is 1 or 2. Feels more like a sprain. So all in all not bad!  Feeling great. Typical side effects - mouth sores, rash,hoarse voice - have come and gone. None lasted long and all were promptly treated. For nonclear cells trolling out there, this trial is being conducted at Memorial Sloan Kettering in N.Y. It is open to drug treatment naive patients and ends in July.  Cheers everyone!

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

Stability is a victory. Anything resolving is awesome!  Great attitude. You can tell you are moving forward with your life. I try to live the same way. Nice stuff. Think about zometa to strenghen the bones. These fractures suck.

I am alive
Posts: 221
Joined: Jul 2012

I can't remember if you have a fracture. Do you? I gotta tell ya, it bummed me out to hear that I have one. That and some osteoporosis. Not a good cocktail . Visions of canes and a hump back and crooked spine immediately ensued. Ofcourse I did a search and was sobered to learn that fractures can shorten life. But then I smiled. See how I'm concerned about my old age? Always looking forward! For a sec there I forgot I had cancer. Ha! My sister-in-law, who battled breast cancer 10 years ago and won, always says "But how do you feel today?" when we talk about RCC. "If you feel good, that's all that matters." You and I, I think, see the wisdom in that. And yea, stability rocks!

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

Yes. I have fractures in ribs on both sides. I should worry about my spine Mets but exercise and weightweight train anyway. I'm counting on the zometa to work as I don't think the radiation did.

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

Anytime "continued diminishment" and "stability" show up in the same sentence - YES!!!! So pleased for you Peg.  Momentum is on your side. Keep doing what you're doing so the trial can keep doing what it's doing.

I am alive
Posts: 221
Joined: Jul 2012

Hi guys. I'm checking in with the latest CT and scan results. Almost 9 months into my clinical trial for non clear cell RCC and still showing stability, so I'm lovin my Avastin& Afinitor. In late February Lovaza was added to my meds to control triglycerides, which had jumped to over 300 ( totally normal pretrial) and they are back to normal now. My cholesterol had also risen and Lovaza seems to have brought that down too. Got a cardiologist onboard since an oddball episode of tachycardia (fast heartbeat) that lasted about 30 minutes. Tests came back negative.

The compression fracture of the L1 vertebrae (brought on by IGT radiation 16 months ago that  killed a small met but subsequently weakened the bones) has gotten a bit worse - still manageable but a constant presence. Saw stars and twisted my back a couple of weeks ago when I slipped off a sidewalk curb, and getting in and out of the car can be a trial. Mid May I'm scheduled to have a kyphoplasty, an out-patient procedure  during which a  neuroradiologist inserts  a needle with a balloon attached at the end into the fracture and injects a cement-like substance to shore it up. It's a relatively new procedure - 5 years or so - done under general anesthesia that has an 80-plus success rate  relieving pain among cancer patients (higher in the general population). Doc saiid they are starting to use it more proactively, meaning on patients like me who are not yet in excruciating pain from the fracture, to prevent it from getting worse. I confess I'm not looking  forward to it - cement? Really? What could go wrong? Don't ask. And who likes general anesthesia? On the other hand, I'm grateful it's on the table. We do love our options. I'll keep you posted.

Though I have not posted much lately - SO many doctor's appointments & tests, it's been CRAZY, and so often, really, I feel I don't have much to contribute - know that I lurk & I learn & my heart is with you all.

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

Thanks for sharing your AA report, Peg.  Steady as she goes. 

The kyphoplasty seems to be a procedure that's being used ever more frequently, doubtless because it is plainly very successful and many cancer patients are deriving a lot of benefit from it.  Good luck for mid-May and please keep us posted on your continuing success.

keithafroehlichsr
Posts: 5
Joined: Nov 2012

Hi Folks.

After reading some of your stories---I am a bit more concerned about my situation. First let me say I am sorry you are all experiencing this health crisis too!! I am wondering if anyone here has any suggestion for me about waiting for scans annually VS every 6 mo??? I just returned from National Institute of Health (NIH) from post Neph surgery follow up. My HX- incidental finding multifocal bilateral masses 9/12. I had 15 tumors --2- 8cm, a couple 6cm, some 4cm-one in the renal pelvis, and smattering of lesser sized ones removed from the left on 1/8/13. My current creatnine is 1.58-amazing!! I have 8 tumors in the right, 3 of which are 8cm plus. I was told that 14 of the 15 tumors taken from the left are Oncocytomas and that one was "marked nuclear atypia with focal extension into the fat" the doctor telling me this said probably some hybrid Chromophobe but that the "team was stumpped" as to what it really is. He also said what I presented with is incredably rare but I will die with it and not because of it. I am 62. The surgeons have decided that because bilateral masses are usually 'concordant"-- what's in one side is in the other-- they will do active surviellence annually on the right and not remove it as origianlly planned. 

Reading this site I can see that while chromophobe is low grade and slow growing it seems that it can and does spread and reappear in partial Neph. So what is concerning is why would this doctor have such a casual conversation with me about the risk??? I left very happy and feeling I would not have any other problems with my Kidney's!! Now I am not so sure.

I was also just DX on 3/18 with prostate cancer- gleason 9 --6 of 12 cores 7+. I have a persistant pain in my scapular (the reason I found the kideny masses back in September) which has never been imaged or scanned--I was told it is muscular skeletal pain and not to worry. The same doctor that shared the above kidney pathology news is handling my prostate problem soIi am hoping he will order a bone scan and not be so casual about the prostate problem.

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

Keith, there are a few members here who may be able to pass useful comments (alas, that doesn't include me)  but no-one with anything like the expertise of your doctor at Bethesda - presumably you are seeing a top RCC/prostate medical oncologist?  Yours is an unusual situation and there's unlikely to be anyone here with deep knowledge of the relevant issues.

Have either you or Judy joined Smart Patients (the successor in the making to ACOR's KIDNEY_ONC) where you should be able to tap into a range of professional opinions?

Have you pressed your doc for a thorough explanation of why watch and wait is being recommended for the kidney problems? Perhaps the thought is that the prostate dx is more urgent to tackle than the kidneys.  Oncocytoma must be a better dx than RCC and if you had the closely related chRCC in only one instance, small, and now removed, the prospect of metastasis seems fairly remote (I guess the statistical probability of concordance is high enough that they presume all contralateral tumors will be oncocytomas and therefore not too worrying).

CSN here also has a prostate cancer forum - have you looked over there?  Prostate is a cancer where there's been much better advance in treatment than in kc, which is also encouraging.

one putt
Posts: 72
Joined: Sep 2012

Hi Keith,

 I had a radical rt nephrectomy 11-1-11 laproscopic and partial open. Initially my scans revealed it had metasticized only to my lungs. In late March 2012,      I began developing pain in my rt. shoulder that rapidly grew worse. I was scheduled for an MRI thinking it may be a rotator cuff issue. My oncologist ordered a CT scan of my shoulder prior to my MRI which revealed a tumor in my rt. scapula. I would urge you to ask your doctor to have the area scanned. Good luck !

RebeccaBenoit's picture
RebeccaBenoit
Posts: 5
Joined: Jan 2014

10cm, left kidney. Radical open nephrectomy, adrenal gland left. Clear margins. So stage II, Grade 3.

 

I am two years post op, last scans in April. Recently discovered that my left ribs (same side as the surgery) are easily twice the size of the right, and slightly sore.

 

I'm having both an abdominal CT as well as a chest.

 

Could this be mets to the ribs? Spleen? Anyone have this NOT be a reoccurence?

 

I have the worst scanxiety!

 

Oh, I am 34. I was 32 (F) at diagnosis, and who KNOWS how long I had, had it for before the incidental finding.

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

Rebecca, it is premature to speculate on what it could be. When is your scan? Good luck. I hope it is soon.

RebeccaBenoit's picture
RebeccaBenoit
Posts: 5
Joined: Jan 2014

Tomorrow morning

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