Well Joe has been home a week from the hospital. Things are going well. Visiting nurse comes in, home health aide and a Physical Therapist on different days. He has had 5 straight days of radiation with 2 more to go - next Tuesday and Wednesday (Monday is Columbus Day and no radiation). So far so good. Chemo is back on.....a week from today. On Oct 16th he will have a blood draw at 9:00, meet with the NP at 10:00 and chemo to start at 11:00. We are taking it as a good sign that the chemo has started back up. Radiation on Tuesday will be at 10:20am and Wednesday it is at 11:40....all at the Brighams. Chemo is at Dana Farber. Please feel free to visit....I will be updating the schedule in a few days and will post. So the fight continues.....Elwood Strong! (per Nikki)!!!
I've attached some calendars for each month. Folks can look and see when treatments are currently scheduled and who is taking Joe and Joan. Feel free to visit Joe and Joan (particularly when Joan is at work) and feel free to indicate you want to go to an appointment. If the chemo happens this Friday, Jeannette and I will be taking them in. But if someone else wants to.....that's ok too! The chemo is basically all day....even longer if he has the radiation in the morning. Hope this helps.
Joe came home from the hospital on Friday, October 2nd.....Happy Birthday Joan!!!! The reason he was in the hospital is the tumor has gotten so large, it's pressing on his esophagus and he couldn't swallow or breath and was in a lot of pain. Doctors decided to start radiation to help shrink the tumor which will allow him to swallow and breath easier. The treatments started on Friday Sept 25th (I think) and as of today (Mon Oct 5th), he has had 8 treatments. The treatments are done at Brigham & Womens. He has a treatment on his chest, the next day on his side, the next day on his back, etc. Every day they rotate so that he is not getting it all in one spot. There will be a total of 14 treatments, high dosage. So far, other than being tired, no side effects although this could change at any minute (skin burn, peeling, burning in the throat, etc.). He has a PEG (feeding tube) installed in his stomach. Joan (or whoever is around) attaches a big plastic hypodermic type needle into the tube (which is attached to his stomach) and cans of soft/liquid type food are put in the needle and Joe releases it into his stomach. The goal is to have about 6 "cans" a day....so far....he can only get about 3 down....any more and he regurgitates. Joan is also giving him some of his meds in the tube with water (and a flush to keep it clean). Joan is also giving him soup and a "thickened" milk orally so that he continues to swallow and keep using those muscles working. He has a patch that gets changed every 3 days (approx.) and time releases pain meds, he has morphine, etc. The radiation, hopefully, will help shrink the tumor on his esophagus and he can take more and more food/liquid orally. As of today, his next chemo is scheduled for this Friday but that is uncertain. There is a call into the Medical Oncologist, waiting to hear back on whether this will still occur. Radiation will continue tomorrow, Wed, Thurs, Fri, and then next Tues and Wed and he is done. I will continue to update as I have info. I will also add a calendar so that we can all see the schedule of treatments, doctors appointments, Joan's work schedule, etc. The fight is on!!!
Joe went to the hospital last Monday nite by ambulance. He was not getting any fluid in and he was in a lot of pain. Since he's on chemo, he has to get approximately 64 ounces of liquid into his body some how, every day. Since that wasn't happening, he was admitted into the ICU at Brigham & Womens. He was given delauden (sp?) intravenously for pain and had all sorts of xrays, scans, etc. And he was given nutrients intravenously. Today, Dr. Jackman (oncologist) met with Joe and Joan to discuss next steps. Jeff was there (not sure if others were there as well). There is a tumor on Joe's esophogus which is rather large (not sure if this is from the same mass or it's new - I didn't ask). That is preventing Joe from swallowing and getting food/water into his stomach. Based on the discussion with Dr. Jackman, Joe is going to try radiation to shrink the tumor. Joe has decided to leave the chemo open for now. When it's time for the next chemo treatment, the doctor will assess Joe at that time and they (Joe, Joan and Doc) will decide if he will have chemo then or maybe wait a bit. Right now Joe is being tattooed for his radiation treatment. He will be radiated 5 days a week for 3 - 6 weeks. If I've got this correct, Joe will have radiation on his front one day, his side the next day, the back the day after, etc. I think they are alternating sides every day. Hopefully, the tumor shrinks and Joe can start swallowing and get food/water into his body. I also think, although I could be wrong, first radiation treatment is tomorrow.
I will try and update this again on either Saturday or Sunday.
Sept 18 - Joe had his first chemo treatment. He started with steroids the night before and first thing in the morning. Joe, Joan and Jeff then went into Dana Farber. Joe had blood work done, met with his medical oncologist (Dr. Jackman) and then met with the Nurse Practitioner who started Joe on the nausea med and then the chemo. Apparenty a side effect of steroids is you get an appetite. Since Joe is down to 150.9 pounds, getting some food into him was a big step. He ate a bowl of chowder and other food. He also has to drink a larger quantity of water, which seems to be working. He is going to be on a regimen of pain meds as well. It was a very long day for all of them. Jeff got them back home around 7 that nite. So far, in my discussions with Joan, he's sleeping good, not in pain, and hasn't been sick. This is Sunday, so I'll check in with her later and see how things are.
Next steps....on Sept 30 he has an appointment for blood work (chemo impacts white/red blood cells, etc.- need to make sure they are tracking). Then next chemo treatment is on Oct 9. Jeannette and I will take Joe and Joan in for that appointment. He will have a scan before his third chemo appointment (which is the end of October) to see how the chemo is working.
Will continue to keep everyone posted!! Think good thoughts!
Sept 15 - Met with Dr. Jackman from Dana Farber. First of all, chest scan from last week indicated no clots in the lungs, cancer has gotten a little bigger, and there is more fluid outside the lung. Joan asked what the fluid is from, Dr. Jackman indicated it is from the cancer.
Biopsy of the adrenal did see cancer. It is "poorly differentiated carcinoma", the pathologists had a hard time figuring out the type of cancer, which means that Joe falls into the 15% category where they cannot identify the type of lung cancer (small cell vs non small cell). However with all the information and data they have (Dana Farber), it's lung cancer. They don't think it was related to the bladder cancer at all. But since the cancer has gone to another organ, the cancer is in his blood stream. It could also be elsewhere, but it just can't be seen yet. As a result, it can't be cured and they can't radiate. Radiation would be a possibility if the mass was preventing Joe from breathing, then radiation would be used to shrink the mass to help him breathe, but that is only to relieve a symptom (breathing), nothing else. Joe can breathe right now, and when it's difficult, he has oxygen.
The goal is to try and manage the cancer and make Joe feel better and live longer. Dr. Jackman feels using 2 types of chemotherapy, sequentially, will help attain that goal. The side effects are loss of hair (about 2-3 weeks after treatment begins, nausea, diarrhea, constipation, fatigue, muscle aches, numbing and tingling in the hands and feet, low blood counts, infection, bleeding, anemia, etc. Rare side effects are damage to the liver, kidney, or lungs. Hearing loss is another side effect.....but Joan feels that's been happening during their whole marriage. The first round of chemo will be this Friday and it is a 4-5 hour process between blood work, meeting with the doctor and then receiving the chemo intravenously. Jeffrey will take Joe and Joan in for the treatment.
Joe will also start some steroids and he will have 2 different medications to control the nausea. Currently, Dr. Jackman feels there will be up to 6 rounds of chemo, once every three weeks. Except for the first round, Joe will have a scan the day before his treatment to assess whether the chemo is having an impact.
Joan has had Joe out and about over the past few days and he does look better. He didn't need any oxygen today when we were at the appointment. Joan was planning on taking Joe out later today for McDonald French fries and maybe a frappe.
The biggest thing right now for Joe is: 1.) get as many fluids as possible every day, 2.) get as many calories as possible and it doesn't matter where the calories come from, and 3.) try and stay healthy. Because Joe will be susceptible to infections, nobody should visit who may have any infection, cold, flu, sniffles. etc. Joe needs to stay strong!
First of all, Joe was diagnosed with bladder cancer back in 2009. Dr. Eyer (?) was able to remove the cancer (I believe this was done via cystoscopy) and Joe followed up with 6 weeks of a chemotherapy treatment that was injected into the the bladder. He has had regular check ups with the doctor with the most recent being this past July and everything is clean.
On July 28th, Joe had an appointment with Dr. Zito because he was having some difficulty breathing, he was getting dizzy, and was losing weight. He did not "feel" right. An X-Ray was done which showed a shadow in the chest area.
July 31 a CAT Scan was done at Faulkner which showed a large mass on the aorta, esophagus, lung and left artery.
August 1st an MRI was done at Faulkner.
August 3 a breathing test was done at Faulkner.
August 4 a Consult with Dr. LaHive regarding a Bronchoscopy at Faulkner
August 5 an appointment with Dr. Belkin, a vascular surgeon, at B&W and results were fine.
August 7 a PET Scan was done (head to thigh).
August 11 Bronchoscopy was complete at Faulkner by Dr. LaHive that was inconclusive. She tried to get some samples, wasn't good enough.
August 17 Ultrasound was done at B&W on legs and neck and everything was ok.
August 18 another breathing test at Faulkner without oxygen (?) which allowed a script to be done for Joe to get oxygen at home.
August 25 appointment at B&W with a Thoracic Surgeon, Dr. Weiner. At this point, Joe has lost about 40 lbs since May and is having difficulty breathing and is in pain, particularly in the morning. There was a rehashing of how this all started, and a review of the tests as well as reviewing how Joe was feeling at that time, Dr. Weiner indicated he was pretty confident its cancer, presumably lung cancer. His concern was on the PET scan as it appeared there was something on the adrenal gland. Recommended a biopsy, and if it comes back as cancerous, then it's stage 4 lung cancer. A biopsy was scheduled, a script was created for pain medication and a consult appointment was scheduled at Dana Farber.
Sept 3 the biopsy was done at B&W with CT imaging. Thought Joe would be knocked, but he wasn't. Very painful and had to stay in recovery for 4 hours. It got pretty bad and he needed pain meds and oxygen. The Doctor who performed the biopsy indicated they got 6 good samples and it would take 5-7 days for pathology results.
Sept 8 consult at Dana Farber. Dr. Braun came in to make sure he had all the correct info and we walked through the whole process again (from Jul 31 through today) as well as Joe's history (family, COPD, emphysema, peripheral artery disease, bladder cancer, etc.). Talked about the current symptoms of breathing difficulty, pain, coughing, phlegm and difficulty eating. Doctor suggested taking the pain medications now - don't know how much pain you're really in until you are not in pain. Take the Boost 3 times a day and get as many calories as possible (mac & cheese, ice cream, soup, etc.). And no results yet on the adrenal gland which is critical. The pathology does show cancer cells, but they have to "stain" them in order to determine the type of cancer. Dr.Braun left to consult with the medical oncologist Dr. Jackman. Dr. Weiner came in to say no results on biopsy although, again, fairly confident it's lung cancer. Asked if this could have come form the bladder cancer, he said probably not, he's never seen it behave that way. Typically, lung cancer goes to the liver, adrenal, and brain. He encouraged, strongly, taking the pain medication. Reducing the pain will, hopefully, provide more energy to move around. Dr. Weiner said he is handing the case over to Dr. Jackman. Dr. Weiner will be involved if any surgery is required. Dr. Jackman and Dr. Braun came in. They explained that the goal is to now help Joe feel better and live longer. Given what they know now, they feel it's cancer and it's advanced and most likely it is lung cancer. Need to know from the biopsy if it's Non Small Cell Lung Cancer or Small Cell Lung Cancer. Both grow differently and would require different treatment. They are very concerned about whether Joe is strong enough for any treatment. At this visit, he needed another Tylenol and oxygen. He gets very "stressed" when he has to talk too long, particularly when he's trying to make sure he is communicating what is important. Can't get rid of the cancer, but will try to make him feel better. They believe it started in the lung and went to adrenal. A CT Scan was scheduled at Faulkner for next day to check on the lung, make sure there isn't a blood clot, and check out any other areas. An appointment for another consult is scheduled for next Tuesday at Dana Farber. Once again, encouraged taking the pain medication.
Sept 9 - Joe took the Oxy last night and slept better. Joan is getting him out today to move around. Roche Brothers has tables and chairs. Joan is also looking into getting portable oxygen so he can move around easier. She is making him eat!
Sept 9 CT at Faulkner. Dr. Braun called with results of CT. No blood clot(s) in lung. The mass is slightly bigger which is to be expected since the last CT was a month ago. Gives them a frame of reference when treatment is started as to how much the mass may go down. No biopsy results yet.
Next appointment is Tuesday morning at Dana Farber with Dr. Jackman to get the results on the biopsy and find out what type of lung cancer it is, and next steps.