Side Effects:
Lowell had his third chemo treatment today and is experiencing some cramping in his thumbs and jaw, but is doing well other than that. He has also learned (through sad experience) NOT to eat too much when he feels good, as his body just can't handle it.
Port Update:
Lowell had a personal visit in the hospital today from the PA (Eric) who installed his power port. Eric was concerned that we had been told that Lowell didn't have the correct port and wanted to allay our fears. He graciously took the time to come talk to Lowell and even made copies of the x-rays that were taken at the time the power port was installed. The x-rays clearly show it is a power port. Lowell was impressed with the PA's caring concern and personal attention.
On a spiritual note:
Lowell loves to attend the temple and feels great strength come when he is there. It is a humbling experience to know that your own name may be among those on the prayer rolls. Lowell continues to receive promptings from the Spirit and tender mercies from the Lord, even concerning the historical record he and Chad are developing for the church. He has received sources, information and document without even having to search them out. We love you and wish to thank you again for your prayers and kindness.
Tuesday, March 30, 2010
Wednesday, March 24, 2010
Chemo, Round 2
The second dose of chemo has gone very well – so well that we know that your faith and prayers in Lowell’s behalf have lessened the side effects of the chemo, even though an additional drug (Avastin) was added to the mix this time. We cannot thank you enough for remembering Lowell in your prayers.
1st Round’s Side Effects: Sensitivity to cold, shock-like sensations in his fingertips, stomach upset, major fatigue, diarrhea and constipation, slight chemical taste, cramps in the jaw area.
2nd Round’s Side Effects: Much the same, but much less severe. He still has sensitivity to cold, occasional jaw cramps and slight fatigue – but no stomach upset!
When we went to Lowell’s second chemo appointment we also met with his doctor. Lowell told the doctor about the switcheroo with a non-Power Port for the Power Port that had been requested and Lowell asked the doctor to look at the surgery notes on the port placement. The surgical notes stated they had put in a ‘Power Port’. Hmmm.
The nurse who helped Lowell this time must have heard about the ‘power port’ issue through the grapevine. He told Lowell that the port may not be a true ‘Power Port’, but he felt like it might be one of the newer generation ports that are not made completely of metal. Who knows. I don’t think they will tell us anything more at this point, as everyone hates the thought of law suits (even though that is not our style).
We will notify our insurance carrier about the discrepancy though, as there is probably a cost difference and they shouldn’t be billed for the more expensive model.
Medical Records Access - Information Learned:
There was a long version to this which took several hours. You are the beneficiary of what we learned through that experience – and here is the short version:
To gain access to your medical records, contact the Release of Information Office. (At least that is what it is called at the IMC.) You will need to sign a release form and show picture ID, but you can pick up your records right then. Realize there may be other patrons waiting as well, so give yourself enough time to take care of this before they close for the day.
Wednesday, March 3, 2010
Chemo Day 1
We went to the IMC for Lowell’s first chemo treatment Tuesday. The nurse (Ann) had a hard time finding the dots on Lowell’s power port so she called the senior nurse (Shelley) over to help. Shelley felt the port, then announced that there were no dots, Lowell had been given an old-style port rather than the newer “power port”. What does this mean? It means Lowell won’t be able to have every procedure done through this port – some procedures will now have to be done in his arm too.
Are we a little upset? Yes. But Lowell was gracious with the nurse and said he would be fine with having some things in his arm.
He’s a good man.
For you who are entering into this Cancer Realm, make sure you request a POWER PORT before you go into surgery. Whether the port prescription wasn’t specific enough, the hospital wanted to get rid of the old-style ports, or whatever - we are now stuck with what we have.
Side effects so far:
- Electric charge-type feelings in the end of the fingers (Lowell described it as similar to what happens when you chew tin foil)
- Slight cold sensitivity
Side effects are supposed to get worse AFTER the chemo treatment, so we’ll have to see what happens in the next couple of days.
The Oxaliplatin pump noise was kept at bay (somewhat) during the night by covering the pump with towels. We put the pump in the nightstand drawer on a towel, covered it with two more towels and made sure the line wasn’t kinked. The pump sounds like the airport eta board over in Russia when they would click over in sequence to show the new flight arrival times.
We are grateful Lowell feels as well as he does and hope he won’t have to suffer too much.
Saturday, February 27, 2010
Port Update
Well, Lowell now has a new piece of hardware embedded in his upper chest and neck.
When Lowell had his pet scan on Monday he was fascinated to learn that they use fluorine 18, a man-made isotope produced from a cyclotron at the University of Utah. Fluorine 18 has a half life of 110 minutes, which means he was radioactive for a brief time.
The chemotherapy class on Tuesday was informative (the video was cheesy) and the nurse was good. She said that Lowell was the only patient she'd ever had who was able to correctly answer the question, "What is chemotherapy?" (Chemicals used to destroy rapidly-dividing cells.)
Thursday morning we were instructed to be to the hospital by 6:30 a.m. for Lowell's port placement. The receptionist told us that Lowell was the first patient that day, so when 8:30 rolled around and we were still waiting for them to come get Lowell, Elaine started pacing the floor. At 9:15 the nurse came in and added an antibiotic to the saline drip, with the comment, "We need to give you an antibiotic before we do the surgery. This will take about 45 mintues to an hour", at which time Lowell said "you mean we won't be starting for ANOTHER hour?" (He is too kind, as I would have been asking questions long before that.) She must have realized how long we had been waiting and said "I guess we can go down and get you prepped by the time the antibiotic is finished."
Everything went well and we left the hospital at 11:45. (If, as the first patient of the day, we didn't get started until 10:15 or 10:30, I'd hate to be the last patient of the day.)
Later that afternoon Lowell was blessed with a visit from Sean Martella (our nephew), who is also fighting cancer. Sean was kind enough to share his experiences and insights concerning chemotherapy. Lowell has great admiration for Sean and all he and his sweet wife, Karen, have been through. We wish them the very best and hope Sean will be accepted into a new clinical trial in New York.
We are humbled by the many expressions of love, faith and prayers that we hear of daily, many of which come from people we don't even personally know. We feel your love and can't begin to thank you enough for your prayers in our behalf. May the Lord bless you all for your kindness and thoughtfulness.
Love,
Lowell and Elaine Wright and Family
When Lowell had his pet scan on Monday he was fascinated to learn that they use fluorine 18, a man-made isotope produced from a cyclotron at the University of Utah. Fluorine 18 has a half life of 110 minutes, which means he was radioactive for a brief time.
The chemotherapy class on Tuesday was informative (the video was cheesy) and the nurse was good. She said that Lowell was the only patient she'd ever had who was able to correctly answer the question, "What is chemotherapy?" (Chemicals used to destroy rapidly-dividing cells.)
Thursday morning we were instructed to be to the hospital by 6:30 a.m. for Lowell's port placement. The receptionist told us that Lowell was the first patient that day, so when 8:30 rolled around and we were still waiting for them to come get Lowell, Elaine started pacing the floor. At 9:15 the nurse came in and added an antibiotic to the saline drip, with the comment, "We need to give you an antibiotic before we do the surgery. This will take about 45 mintues to an hour", at which time Lowell said "you mean we won't be starting for ANOTHER hour?" (He is too kind, as I would have been asking questions long before that.) She must have realized how long we had been waiting and said "I guess we can go down and get you prepped by the time the antibiotic is finished."
Everything went well and we left the hospital at 11:45. (If, as the first patient of the day, we didn't get started until 10:15 or 10:30, I'd hate to be the last patient of the day.)
Later that afternoon Lowell was blessed with a visit from Sean Martella (our nephew), who is also fighting cancer. Sean was kind enough to share his experiences and insights concerning chemotherapy. Lowell has great admiration for Sean and all he and his sweet wife, Karen, have been through. We wish them the very best and hope Sean will be accepted into a new clinical trial in New York.
We are humbled by the many expressions of love, faith and prayers that we hear of daily, many of which come from people we don't even personally know. We feel your love and can't begin to thank you enough for your prayers in our behalf. May the Lord bless you all for your kindness and thoughtfulness.
Love,
Lowell and Elaine Wright and Family
Saturday, February 20, 2010
The Plan
We have decided to go with the FOLFOX chemotherapy treatment, consisting of 5FU, Oxaliplatin and Avastin.
Lowell will be on this chemo regimen for about three months, at which time they will stop the Oxaliplatin, as it causes neuropathy (numbness) if left too long. Lowell will then continue with just the 5FU and Avastin for three more months (six months total chemo), barring additional info which would make them change the regimen (i.e. treatment not working). We also asked Dr. Whisenant about Avastin, as one of the oncologists in Jeff’s hospital (University of Virginia) voiced some concerns with it. Avastin patients have been known to have a very slight increased risk of stroke and heart attack, as well as an increased risk of GI perforations (1 in every 200 patients). 95% of patients have no side effects from taking Avastin and one of the positive reasons for its use is a 15 to 20 % increase in tumor shrinkage. The doctor said he would go with this treatment if he were in Lowell’s position. If this treatment doesn’t work or we want to pursue the debulking/heated intraperitoneal therapy, Dr. Whisenant recommends we go to see Dr. Andy Lowy in San Diego, who specializes in this. (Hmm, San Diego.) Here is the schedule for the next few weeks:
· Lowell will have a PET scan on Monday to use as a baseline, although Dr Whisenant isn’t sure the cancers are large enough to show up on the scan yet
· Tuesday we are signed up to attend a Chemo class
· Wednesday they will call with a time to come in for the port insertion surgery
· Thursday we will go in to have the port implanted. The port-a-cath is placed under the skin on the chest. The catheter is then inserted into the superior vena cava vessel at entrance of the right atrium of the heart. It is approximately a one-hour procedure. The port-a-cath can be felt under the skin and the nurse can find the entrance by locating the edges of the port and inserting a special needle (called a Huber needle) into the soft middle section. Medications can be given through the port-a-cath and blood can be drawn from it eliminating the need for a blood draw from the arm. The use of a portable pump and port-a-cath allows the medication to be given over several days in a home setting rather than as a patient in the hospital. There are no dressing changes required but there is some maintenance involved
· We start chemo on Tuesday, March 2
Lowell will be on this chemo regimen for about three months, at which time they will stop the Oxaliplatin, as it causes neuropathy (numbness) if left too long. Lowell will then continue with just the 5FU and Avastin for three more months (six months total chemo), barring additional info which would make them change the regimen (i.e. treatment not working). We also asked Dr. Whisenant about Avastin, as one of the oncologists in Jeff’s hospital (University of Virginia) voiced some concerns with it. Avastin patients have been known to have a very slight increased risk of stroke and heart attack, as well as an increased risk of GI perforations (1 in every 200 patients). 95% of patients have no side effects from taking Avastin and one of the positive reasons for its use is a 15 to 20 % increase in tumor shrinkage. The doctor said he would go with this treatment if he were in Lowell’s position. If this treatment doesn’t work or we want to pursue the debulking/heated intraperitoneal therapy, Dr. Whisenant recommends we go to see Dr. Andy Lowy in San Diego, who specializes in this. (Hmm, San Diego.) Here is the schedule for the next few weeks:
· Lowell will have a PET scan on Monday to use as a baseline, although Dr Whisenant isn’t sure the cancers are large enough to show up on the scan yet
· Tuesday we are signed up to attend a Chemo class
· Wednesday they will call with a time to come in for the port insertion surgery
· Thursday we will go in to have the port implanted. The port-a-cath is placed under the skin on the chest. The catheter is then inserted into the superior vena cava vessel at entrance of the right atrium of the heart. It is approximately a one-hour procedure. The port-a-cath can be felt under the skin and the nurse can find the entrance by locating the edges of the port and inserting a special needle (called a Huber needle) into the soft middle section. Medications can be given through the port-a-cath and blood can be drawn from it eliminating the need for a blood draw from the arm. The use of a portable pump and port-a-cath allows the medication to be given over several days in a home setting rather than as a patient in the hospital. There are no dressing changes required but there is some maintenance involved
· We start chemo on Tuesday, March 2
Tuesday, February 9, 2010
Second Oncologist Visit
Decisions, decisions…
Monday afternoon Dr. Sunil Sharma, Senior Director of Clinical Research at the Huntsman Cancer Institute, gave us the following information:
1.The FDA has 30 days to respond to the request for a clinical trial. They always respond on day 29, which puts us at least two weeks later starting chemo than if we start FOLFOX as soon as possible. There would probably be further delays as they do patient selections, etc.
2. We can’t start chemo and then hope to be part of the clinical trial.
3. We can apply to be part of the trial, but they don’t have to accept us for the trial, which means we’ve delayed starting chemo for nothing
4. Even if we’re accepted for the trial, our odds are only 50-50 that we would get the new drug, since half the patients are given a placebo and the other half get Everolimus. So, we delay chemo, take a chance we’ll be selected for the study, then take a further chance we’ll get the new drug
5. The new drug may not work on this type of cancer anyway
6. Adding a new drug to the mix could cause unexpected side effects
We now have about a week and a half to decide if we are going to go up to the Huntsman Center for treatment, or to the IMC, which is nearer our home. We’ll keep you updated as things transpire.
Monday afternoon Dr. Sunil Sharma, Senior Director of Clinical Research at the Huntsman Cancer Institute, gave us the following information:
- The average life expectancy of patients with this type of cancer who do nothing – 9 months
- The average life expectancy of patients who do the FOLFOX chemo treatment – 18 to 24 months
- These are the average life expectancy numbers, which means some will be shorter, others longer (We, of course, plan on being the LONGER part of that stat)
- Dr. Sharma recommends we get a pet scan and then do the FOLFOX chemo treatment, starting approximately one month from Lowell’s appendectomy. (This is also what Dr. Whisenant, Utah Cancer Specialists, recommended
- Dr. Sharma said the heated chemo wash poured into the abdomen has a very limited effectiveness and a high morbidity rate. Lowell’s specific type of cancer isn’t one that this treatment is even somewhat effective on
- Dr. Sharma is applying (to the FDA) today for a new clinical trial involving this same treatment, but adding the drug Everolimus to the FOLFOX treatment. (Currently Everolimus is only approved for Kidney cancer patients.) Dr. Sharma thinks we should do the FOLFOX, and not wait for this.
1.The FDA has 30 days to respond to the request for a clinical trial. They always respond on day 29, which puts us at least two weeks later starting chemo than if we start FOLFOX as soon as possible. There would probably be further delays as they do patient selections, etc.
2. We can’t start chemo and then hope to be part of the clinical trial.
3. We can apply to be part of the trial, but they don’t have to accept us for the trial, which means we’ve delayed starting chemo for nothing
4. Even if we’re accepted for the trial, our odds are only 50-50 that we would get the new drug, since half the patients are given a placebo and the other half get Everolimus. So, we delay chemo, take a chance we’ll be selected for the study, then take a further chance we’ll get the new drug
5. The new drug may not work on this type of cancer anyway
6. Adding a new drug to the mix could cause unexpected side effects
We now have about a week and a half to decide if we are going to go up to the Huntsman Center for treatment, or to the IMC, which is nearer our home. We’ll keep you updated as things transpire.
Tuesday, February 2, 2010
New Update after Doctor visit Feb. 2, 2010
The First Oncologist Visit (Second opinion coming up on Monday, February 8):
If you need your news sugar-coated, you’d better skip the next two lines…
Lowell’s type of signet cell, appendiceal cancer is extremely rare and is considered terminal.
The doctor told us that approximately 90% of patients pass away within 18 to 36 months, but 10% live for 5 years and more.
We both feel very much at peace -- and I feel that Lowell will be healed.
If we decide to go with this doctor, he recommends the following:
- Lowell will start chemo approximately one month after he had his appendectomy (so that he can heal completely).
- They will put in a port (and pump) and administer the FOLFOX chemo every two weeks for six months.
- Don’t do any additional surgery at this point.
The doctor also gave us the following information about the chemotherapy:
- Patients on this type of chemo typically do not lose their hair or get too nauseated.
- Patients do have a hard time with cold foods for the first few days of each chemo treatment.
- Patients can go about their normal duties, they just tire more easily.
The doctor told us that no one in Utah currently does the intraoperative heated peritoneal chemotherapy, (hot chemo poured into the abdominal cavity) but if we decide we want to try that route he will give us the names of some doctors/facilities out of state that do that procedure.
We are doing well and appreciate the love, prayers and well wishes we have received from everywhere.
Elaine
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