Small trial suggests the scans might help, but experts aren't so sure
by Maryinwis on Tue Jun 12, 2007 12:00 AM
I have been going through all of the various messages looking for others with success stories .... and I found many, but they are all so scattered that I thought I would start my own. I think it is so important to let the "new kids" know that there are many of us still fighting (and winning)! I have been following some of the other success stories of Bunker, Willard and Mary S., and am so happy that there are others out there like me. Here is my story ......
I have had Renal Cell Carcinoma for 7 years, with 3 active episodes (including current). In March, 2000, I had surgery to remove left kidney, with no further follow up action. In September, 2002, I had a second surgery to remove a mass where the kidney had previously been, followed by radiation therapy. In August, 2005, tumors spread to my lungs. They did do surgery to remove the "bleeder" (since I was coughing up blood), and removed 3% of my right lung, but closed me up because the remaining tumors were too large and too many to surgically remove.
In late 2005, they started me on traditional chemo treatment (interferon/interluken), which my body rejected fiercely. They stopped treatment, gave me a few weeks to recoup and tried one more time. Again, I became too ill to continue. Although at that time there was not another treatment waiting in the wings, they would not start a third session. They sent me home and told me to enjoy Christmas with my family, and the oncologist would see me in six weeks. Not said out loud, but definitely an insinuation, that there was really nothing more they could do for me. My oncologist told me there were new therapies currently being studied, but none had been released by the FDA at that time. He explained that my tumors were slow growing, and possibly I could get on this medication some time in 2006 when he expected it to be available.
Right after the holidays, I received the best phone call I ever had in my life. The new oral chemo drug, Nexavar had just been released by the FDA. Although the cost of this drug was staggering, I was lucky enough that my husband worked for GE Medical Systems, and has terrific medical coverage. The cost of the medication was 100% covered, and in January, 2006, I was the first patient at Waukesha Memorial Hospital to start this medication. Four months later, in May, 2006, I had my first CT-scan since starting the medication. Most of my tumors were completely gone, and the ones that remained were drastically reduced. A CT-scan in July, showed no change from the previous CT-scan. They were no bigger, but neither were they any smaller. Another CT-scan in September started showing some small growth, and the last CT-scan in December, 2006 showed 2 new tumors and more growth of the remaining ones.
Nexavar had never proven to totally eliminate tumors. In fact, the average results in the testing stage were some extra longevity (if you had about 6 months, you now may now have 12). And also the average result was to halt any further growth, but not many cases showed tumors shrunken or eliminated. So my results were far off the chart compared to average results. But I was devastated when my "miracle" drug quit working.
But what I didn't know was that in the meantime, another target drug, Sutent, had been released. So we immediately applied for the medication, and even more expensive than the Nexavar, again United Health Care approved 100% of the cost. Sutent works a little differently in that you are on it for 4 weeks, and off for 2 weeks. There was one alarming issue though. One of the new tumors could be felt to the touch on my right side, going towards the back. I didn't know how I would be able to handle this with having the constant reminder there, that I could feel getting bigger by the day.
In December, 2006 I began my first session with Sutent. Literally within days, I could actually feel the tumor shrinking. So it actually turned out to be a positive, as I could feel it shrinking daily. And it helped the doctor as well because he could measure it at visits and know that the medication was working. After 4 weeks, he estimated the tumor shrunk 75%. However, when the 4 weeks were up, and I then went into the 2 weeks off period, I could feel the tumor start growing again. I wanted to start session 2 sooner, but he said that my body needed to rest and get ready for the next round. He was right. By the end of the 2 weeks, yes I was alarmed to have my tumor growing again, but it was the best I had felt in about a year and a half.
When we did start session 2, at about the 3 week point, I was taken to the emergency because of "extreme" vaginal bleeding and super large blood clots. He took me off the medication immediately, until it was determined if this was cancer related or just female related. It turned out that it was female related, and after a battery of tests including a pelvic ultra sound and a uterine tissue biopsy, everything was fine. So since I was off the Sutent for a week by this time, he decided just to keep me off a second week, and then start session 3. At the same time they did the female test, they decided to do my CT-scan early, and the results came back with continuing tumor shrinkage.
I completed session 3, and recently session 4. My latest follow up CT-scan came back with incredible results. All of the tumors in my lungs, except one, are now completely gone. And I also have the one that I can feel to the touch. So right now, I am down to just these two tumors, which by the way, both have shrunken since the last test. This was the best news I have had in a long, long time.
Sutent, like Nexavar, was not ever proven to have the kind of results I have been having. Because these drugs are so new, I’m not sure how many success stories like mine there are. I think it is very important to get my story out there so that the medical field can know of these very positive and life saving results, and also to give any other cancer patients out there some hope.
And, yes, there are side effects. But I wouldn't trade a month of my side effects for one day of what interlueken did to me. They are bearable and definitely worth the trade off of continued life and progress of tumor reduction. All of the side effects were never debilitating in that I couldn't do my job and other activities in my life. I was limited in many cases, but never out of the ball game. I have a home based business, so I am able to accomplish almost as much as I did before at the computer. And also my husband and I are country western dance instructors, and I am not always able to be out there dancing 100% of the time. But I can be at the classes, and be with people who really care about us, and do as much dancing as I possibly can.
SIDE EFFECTS - NEXAVAR
Extreme feet neuropathy, 70% loss of hair (which grew back even while still taking Nexavar), fatigue (requiring 8-10 hours sleep a day), redness to face, hands and feet, mild nausea, mild dizziness. Loss of food taste, some loss of appetite. Very slight finger neuropathy. Anxiety. These symptoms were constant during the entire 10 months I was on the medication.
SIDE EFFECTS - SUTENT
Session 1 - Extreme mouth and tongue pain. Could only eat very bland foods and could not brush my teeth with toothpaste (burned my mouth). Even took Vicadin for the pain. Very slight feet neuropathy. Face and finger swelling. Loss of food taste. Slight nausea and dizziness. Flatulation and loose bowels. However, it is important to note that the side effects did not really start until week 3 of the 4 week period. And completely disappeared during the 2 weeks off. So of the 6 week period, there were only about 7-10 days of these side effects.
Session 2 - This was the interrupted session, so side effects never really reached any of the above levels.
Session 3 - Strange, that this time I had literally none of the side effects until after the third week. And then they all were extremely mild. Slight tingling in the tongue, and mild feet neuropathy. Some slight nausea and dizziness. Heartburn, flatulation and loose bowels. About the only one that was strong was the loss of food taste.
Session 4 – Same as Session 3, except more intense feet neuropathy.
Other items that are noteworthy:
Am doing holistic healing, oil therapy, aroma therapy, hypnotherapy and prayer in counseling sessions to deal with the emotional side of the disease. Other prescription medication I am on include: Alprazolam, Lorazepam, Zoloft, Amitriptyline, Hyzaar, Zocor, Nexium, Ambien and Vicadin. Over the counter medications: Ibuprofen, Sudafed, Imodium, Aspirin, Pepcid AC, Vitamin B-6 Musinex, Comtrex, Centrum Silver, Vitamin C, and Iron. All of these are as needed.
History: I am a 58 year old, caucasian female, in very good health until age 50. My first husband died of complications due to diabetes (Agent Orange connected). Have 2 grown sons age 38 and 32. I am remarried for 8 years. Live with husband who is retired from GE Medical Systems. I have owned my own business for the last 20 years. Mother, father and 7 siblings all alive. No major illness in my family, except for some controlled diabetes. I was a smoker most of my life. Do not drink any alcohol, and never did. Had gall bladder removed in 1975. No other major surgeries, other than the 3 cancer related surgeries. Have had major dental surgery, including dental implants.
My hero (and oncologist): Dr. Frederico Sanchez, Oncology Alliance, N14W23833 Stone Ridge Drive, Suite 200, Waukesha, Wisconsin 53188-1126. Phone: 262-513-2033.
I hope there is someone there who can use this information. If it helps even just one person, it will be worth it. I am a 7 year survivor, and with the new treatments, I plan on being here a long time to tell my story. I truly believe my work here is not yet done.
The cancer research and development of today, is giving every cancer patient a new chance at life. And you don't know how precious that gift is until you have been in these shoes. I was told a year and a half ago that there was nothing more they could do for me. My tumors were numerous and way too large to operate. But here I am, 18 months later, with what I consider to be a good quality of life. I am able to truly enjoy my days, with little pain, with only some inconveniences. And the best part, no more going to the hospital every day, no more chemo, no more radiation. Just oral chemotherapy pills I take every day at home.
And it doesn't matter what kind of cancer we each have. My oncologist explained to me that there are 400 types of cancers, and 400 types of treatment. But with some of these new target drugs they are developing, they are beginning to cross the boundaries and using some of these drugs for more than one type of cancer. My drugs have only been on the market for 18 months, and they are already looking at it for treatment of lung cancer, melanoma, and several others.
The combination of these 2 oral target drugs, literally have given me my life back. Sutent, like Nexavar, was not ever proven to have the kind of results I have been having. So there is always hope. The way these target drugs work is they attack the tumor’s blood supply and literally try to choke it off, so they can wither and die. Each time I am off the medication, the tumors try to regorge itself with blood to grow again, but each time we kill it off a little more. Especially with the 1 tumor I can feel, each time I am off the medication, it does start growing again, but never gets as big as it was the prior 6 weeks.
As I sit here right now, only 5 days into Session 5, I can barely find the tumor on my side. I feel it will not survive much longer.
Dr. Sanchez told me that currently there is no cure for cancer. It was very hard for me to grasp the thought that once you have cancer, you always have cancer. Because when we go for our treatments, we are truly thinking that we can be cured, and will get our old life back. Realistically though, the best we can hope for is long term remission or controlled symptoms. However, he also told me that if and when there is a cure, it will be universal to all cancers.
In this past year, I have been told by many people how strong I am. Do I believe that I am strong? No, not really. In fact, I am scared a lot. Cancer is definitely a disease that you need to fight, not only medically, but emotionally and spiritually as well.
It is very hard for anyone to truly know what it is like to have cancer, unless you've been there yourself. I once had a person tell me that they thought they were completely empathetic and thought they could imagine how hard it must be for a cancer victim. That was, until the day that she had an abnormal mammogram, and needed to be retested because the results were inconclusive. As it turned out, the test the next day showed everything normal. But she said for those 24 hours, she couldn't eat, she couldn't sleep, she couldn't work, and certainly could not come to dance class. She said, for those of us that think we can imagine what it is like, we don't even have a clue. Those 24 hours were so traumatic for her, she said she couldn't imagine how people like me can face it 24/7.
Well, that is because we really don't have a choice. We can either sit home and feel sorry for ourselves, or go out there and make the best possible lives for ourselves. It is just as hard to deal with the emotional side of the illness as the medical side. So you find peace and comfort in any way that you can. I am not sure if any of this will help, and certainly don’t know if any other person will have the same results, but I believe these new breakthroughs will certainly help many people.
“A miracle is not the suspension of natural law, but the operation of a higher law.”
“Sometimes not a miracle, but just believing, takes the greatest faith of all.”
“Your suffering may make an angel weep into her wings, but it will never make her walk away.”
“Whatever you ask for in prayer, believe that you have received it, and it will be yours.” (Mark 11:24)
I get many requests for information regarding my treatment, as well as people who want me to speak personally to friends or family members facing cancer. My advice to all that seek it, is you need to confront your cancer head on – medically, emotionally and spiritually. I will keep you in my prayers, as thousands have done for me. My door and my ear are always open. Explore every avenue of opportunity. The power of God is much stronger than any cancer on earth. Be aggressive and involved in your medical care. Ask about oral chemo treatment. It is at least worth mentioning. Find a way to release some of the emotional tension. I would be happy to share some of the things that have been invaluable to me.
And to all the of the parties that have given me the gift of life, I say THANK YOU …..
· Phizer Corporation – Manufacturer and Developer – Sutent
· Bayer Health Care AG – Developer – Nexavar
· Onyx Pharmaceuticals – Distributor – Nexavar
· Medco Health, Specialty Division – Prescription Provider – Sutent
· Accredo Health Group, Inc. – Prescription Provider – Nexavar
· Medco Health – Prescription Provider – All Other Medications
· GE Healthcare Global Headquarters – Employer (Retired) – Health Insurance Coverage
· United Health Care – Health Insurance Provider
· Dr. Frederico Sanchez – Oncologist – Started Nexavar and Sutent Medications for me
· Dr. Cheryl Serb – Primary Physician
· Ms. Jacqi Lawson – Therapist and Counselor
· Kidney Cancer Association – Current Member
Caring and Sharing,
Mary Cummings (Mary in Wisconsin)
(Please reply on private reply if you would like to contact me by e-mail.)
by Dally_k on Thu Jun 14, 2007 12:00 AM
Thank you so much for this account of everything you have been through. My mom is going through the same thing. Soon to start her 3rd cycle of sutent. Recent scans showed a terrific shrinkage on one of her small brain tumors. She has two....she is doing VERY well on the drug also.
Always inspiring to read accounts of people having good results.
by Dally_k on Sun Jul 08, 2007 12:00 AM
how are things going with you these days?
Just checking in...
by Felipe1 on Sat Jul 21, 2007 12:00 AM
Thank you for all the most valuable information, I now have so many answers to questions I have in my mind at this moment in time and it helps us to be even more positive than we are. My husband and I are both 53 and we have a daughter of 19 and a son who will be 18 next week.
Although we are quite far apart in miles you are now very close in my thoughts and heart.
To cut a very long story short here is our situation to date:
After returning home from Disney Florida in July 1998, my husband collapsed on entering our house, immediately taken to hospital was diagnosed with a perforated intestine and suffering badly with peritonitis, a couple of days later they told us he also had a large tumour on his r.kidney. Five days later they operated on his intestine, could not find the hole but left a drainer there (which he had in until December that same year). When he had regained his strength sufficiently in October 1998, he had the kidney and tumour removed and it was confirmed the tumour was malignant. All ok until January 2002 when blood was found in his urine and after checking him over, found another tumour had grown on the l.kidney, the tumour and a piece of the kidney was removed in March 2002. Constantly he had check ups and until 2006 he had only suffered with diverticulitus, but on the last x-ray, July 2006, it showed a mass between the lungs and after going to Pamplona University Clinic, having a biopsy done, was confirmed with Renal Cell Carcinoma with various tumours in the lungs, diaphragm, on the l.kidney, etc.
He began a clinical test in September, firstly having interferon/interluken and then having Sorafenib (Nexavar). In the December the results showed some of the tumours had decreased in size, others had remained the same but there were no news ones. When he had the scans in June there was slight growth on various tumours so at that time he was advised to change to SUTENT, which was now in the state health system, we went to see the oncologist, he gave my husband the report necessary, which we sent to the inspection department to approve. I collected the certificate of acceptance last week and we collected the tablets on Thursday - Friday 20th July he began on his first session with Sutent.
Good luck and God bless.
by Daddys_my_Life on Thu Nov 29, 2007 12:00 AM
I promised myself to be part of cancercompass once I was more settled and here I am. At the end of Sept 2007 (just before my birthday), my dad was diagnosed with Cancer of the Kidneys which has already spread to all his Lymph notes (Stage 4) following the discovery of a lump in his neck. It was such a huge lump that got us worrying. My parents resides in Malaysia and I'm residing in Singapore. My dad is 64 this year.
We were only given 1 year by the doctors in a Private Hospital in Malaysia. Being the only child, my dad was the most precious person in my life and I knew, I had to fight for the slightest chance possible.
After the negative feedback from his doctors in Malaysia, we decided to proceed to Singapore, Mount Elizabeth Hospital for a 2nd opinion. Our Oncologist, Dr Whang was really an amazing lady. Not only did she give us hope but her confidence in Sutent brought smiles to our family again.
As we are from an average family, the cost was our concern but it was worth a try. Within the same day, we decided to proceed with the treatment for my dad. Only when we returned home, I started to search the internet for more information and came across your article which I felt was so encouraging for my dad. He read it and was convinced that he has a fighting chance too.
He's been on Sutent for 7 weeks now. Chemotherapy was not recommended for him. Hence, it was only Sutent. The first 3 weeks were quite mild dosages but soon he was on the maximum dosage and alike your experience, we started to see side effects coming in on week 4 onwards.
Daddy had de-colouration of the skin, soft stools, 2 blisters on his fingers and total lost of his taste buds. However, I would really like to thank you for the inspiring article and also to share with everyone else that Sutent really works.
We just went for a CT Scan on 26th November 2007. It was a really scary experience to wait for the review but it was a blessing. There was great improvements in my dad's lump on his neck. Possibly reduced by 40% (our gauge from the scan), Dr Whang mentioned that his lymph notes had slight improvements and the tumour in his kidney has also shrunken slightly. She didn't expect tremendous results since we are only a few weeks into SUTENT.
Though the later 2 were not as great a difference as the lump on his neck which was fairly obvoius, she was happy that my dad is progressing in the right direction and it did not spread further to other parts of his organs.
With this, we have been asked to continue with Sutent, for another 4 weeks. I want everyone to know that we are blessed to have this pill available though it's only 2 years old. As long as there's hope, we should not give up and that's exactly what we are doing for my dad.
I'm not sure if Sutent is available in many countries in Asia but now you know, IT IS, in SINGAPORE. Dr Whang was very realistic to ask us to aim for longevity before cure. I know to achieve a total cure may take time but for my dad whom I love so much, he can take all the time he needs. I really hope he will recover soon. For those with the same situation, there's hope.
A big Thank you to daddy's Oncologist, Dr Whang of Mount Elizabeth Hospital, Singapore and all the best to you. We hope to hear of your updates as I will share ours too when I know more. THANK YOU SO MUCH.
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