March 2014 Surgery
Comments
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Sandra, I'm so sorry for your husband's health issues. I will be sending you good thoughts and prayers, hugs.
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Sandra and ucfmom - so sorry to hear about your respective DHs and the additional health issues, sending you each dose of strength. Ucfmom - a friend's dad had the same type of lymphoma and is doing great - he was treated at Moffitt, just in case you feel the need to make the trek to Tampa for a second opinion. I know this sometimes feels like it is neverending - I lost my dad to stage IV lung CA, 4 years later my mom to a degenerative neuromuscular disease that she had been ill with for many years, but then out of the blue my brother was diagnosed with stage IV bile duct cancer 2 1/2 years after my mom passed, and he passed within 60 days. He was my only sibling. I found a mass in my leg when I was visiting my brother for the last time, it was a rare tumor that was removed (at Moffitt) and turned out to be benign, but the initial diagnosis by MRI was a deadly sarcoma with a very poor prognosis - amputation at the hip and 20% 5-year survival. I thought I had dodged the bullet but was dx'ed with BC 18 months later, all within 10 years. Hang in there, you will get through this - as Christopher Robin says - "You're braver than you believe, stronger than you seem."
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Sandra, sorry to hear that your husband is having such a difficult time. I pray for good results and peace for those that have loved ones struggling with other issues. It's so hard to watch our loved ones fight these battles just as I am sure it was for them to watch us fight our own. There's always something, but we just have to keep moving forward while supporting each other however we can.
xoxox
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Just got back from my follow up appointment. Dr. Says the wound is healing but will still need more time; just continue with wet/dry bandaging. I asked him again what it will look like when healed. No real answer. So I asked for more details and he looked at me and he said "I really don't know. Everyone heals differently. We will fix anything after it finishes healing and resting a few months." I told him that was a great answer. I just didn't like always hearing "don't worry about it that is my problem to fix once you are healed". Next appointment is in one month. Sounds like time to plan a vacation somewhere even though water activities are still going to be a no-no.
Sandra I hope your husband is getting good test results. My thoughts and prayers are for you to have the extra strength to get through this new bump in the road.
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....and we are done! Ultra high Mentor 700cc. I'm a little sore on my left (cancer side) but feeling great so far!
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wow iwanna. You look great. Congrats on completing the next step.
Way to go. Get lots of rest.
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Sandra & ucfmom- my thoughts and prayers go you to you and your husbands. Sending you positives thoughts and healing vibes.
Iwanna- congrats on your exchange! Wishing you a speedy recovery
I just took my first Tamoxifen pill last night. Crossing my fingers that have minimal or no side effects. We shall see.
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Sandra and ucfmom, I'm so sorry about your husbands.
Iwanna - You look fabulous.
ojoyjoy - good luck with the tamoxifen and ask your onc if you need to stop taking it before you have exchange surgery. Mine said 2 weeks.
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thanks ladies! Thankfully No nausea. I feel so good that I'm already getting restless. But I promise to rest.
Ojoyjoy, wishing you the best on the tamoxifen. My oncologist recommended lots of walking to keep most of the side effects away. It really does help! At first I took mine at night and it was keeping me up. I switched to taking it in the afternoon and it seemed to correct the sleeping issues. Good luck to you!
Julie, when I read that you stopped taking it and my surgeon and oncologist said to keep taking it. I stopped as well. My body. It's my body and they don't always know what's best. I'll start back up in a week.
Susan
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Susan, I started back up 3 days after. The onc said it was ok to do so after I was walking around more.
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Good to know. Thanks Julie. I'll do the same. This is one area where there was no consistency with the docs so i just followed others. No need to push the envelope with blood clots!
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Sandra & ufcmom - my thoughts and prayers are with you and your family.
iwanna - YAY!!! - that is great news that you are doing so well. I really can not wait until Sept. 9th - so unlike the last surgery!! Both you and Jule are making me anxious to get this over with!
Ojoy - I think we all had the feeling that on the first day of taking tamox that we would turn green and have barnacles growing from our bodies!
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iwanna- I've been walking a minimum of 30min a night since I got my drains out so I'm ahead of the game on that. I am taking it at night but if it starts effecting my ability to sleep I'll switch it to the afternoon. Hope you are feeling better everyday.
Julie & iwanna- I asked my MO about stoping the tamoxifen on Tuesday before my exchange surgery because I had read your post. He said that it takes 2 months for it to leave your system, as you take it, it builds up. He said that because an exchange surgery isn't a "major" surgery that there was no need to stop. If I was to be having a longer more involved surgery, then they would take me off of it but it would be for a couple of months before. We'll see what my PS says when I have my exchange consult. Wouldn't it be nice if all of these doctors could be on the same page???
Frostecat- lol! No barnacles yet
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ojoy - here is some info about Tamoxifen that suggests that your doc is giving you the blood level after taking the drug for a while, but not the half-life info, which is what is important for surgery. What you want to know is the half-life, particularly depending on how long the drug has been taken. This info came from www.Drugs.com
Absorption and Distribution
Following a single oral dose of 20 mg Tamoxifen, an average peak plasma concentration of 40 ng/mL (range 35 to 45 ng/mL) occurred approximately 5 hours after dosing. The decline in plasma concentrations of Tamoxifen is biphasic with a terminal elimination half-life of about 5 to 7 days. The average peak plasma concentration of N-desmethyl Tamoxifen is 15 ng/mL (range 10 to 20 ng/mL). Chronic administration of 10 mg Tamoxifen given twice daily for 3 months to patients results in average steady-state plasma concentrations of 120 ng/mL (range 67 to 183 ng/mL) for Tamoxifen and 336 ng/mL (range 148 to 654 ng/mL) for N-desmethyl Tamoxifen. The average steady-state plasma concentrations of Tamoxifen and N-desmethyl Tamoxifen after administration of 20 mg Tamoxifen once daily for 3 months are 122 ng/mL (range 71 to 183 ng/mL) and 353 ng/mL (range 152 to 706 ng/mL), respectively. After initiation of therapy, steady-state concentrations for Tamoxifen are achieved in about 4 weeks and steady-state concentrations for N-desmethyl Tamoxifen are achieved in about 8 weeks, suggesting a half-life of approximately 14 days for this metabolite. In a steady-state, crossover study of 10 mg Tamoxifen citrate tablets given twice a day vs. a 20 mg Tamoxifen citrate tablet given once daily, the 20 mg Tamoxifen citrate tablet was bioequivalent to the 10 mg Tamoxifen citrate tablets.
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Oh Sandra, I didn't realize your husband was still having such issues! I hope that gets resolved quickly. I know what you mean, I have been so worried about my DH, he NEVER has any medical problems.
Iwanna, you look AWESOME! How wonderful to have that surgery behind you now.
Jbdayton, I'm sorry you're still having healing issues. Your doctor is right though, sometimes healing takes longer than we expect or want. Hopefully it won't be too much longer, I know it's frustrating.
Ojoy, I'm hoping for NO side effects for you.
Frostecat, you have less than a month to go. I bet it will feel like forever and then all of a sudden the day will be here.
SpecialK, I'm sorry to hear about your family members who also had these awful diseases. You have quite a family history now. Do you know if your friend's dad had the lymphoma in the throat area as well? We've seen the SO, MO and RO this week and so far I'm encouraged. They all say this type of lymphoma is very common and very treatable. But then they say the location of the lymphoma is very uncommon. Both the MO and RO say this type (low grade B-cell marginal zone, MALT) typically starts in the stomach, not the throat. So that has me a little worried until we get the results of the PET scan and bone marrow biopsy which are both scheduled for next Wednesday. They are both saying IF PET and bone marrow are clear, they will call it stage I and will mean radiation and possibly Rituxan. If they find lymphoma anywhere else, it will likely be chemo.
We are very familiar with Moffitt and wouldn't hesitate to go there If we need to. Our oldest son was diagnosed with anaplastic large cell lymphoma four years ago. He has a local oncologist in Orlando at Florida Hospital (Dr. Shroff who is now my MO as well), but he also sees Dr. Sokol at Moffitt - he is the most knowledgeable specialist in the area and we feel lucky to have him so close by. Dr. Shroff defers to Dr. Sokol for treatment decisions and so far Andrew has been able to have almost all his treatments in Orlando. But it has at times been a challenge to get things coordinated between the two doctors. We really like all Mark's doctors and especially like the fact that every doctor and treatment area is right there all in one place. They coordinate with each other to make and move appointments as needed so it's less stress for us.
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Ucfmom, what a difference a few days makes. Your situation sounds more hopeful. Once all the tests come back and you and your husband chose a treatment plan, you'll feel better. It's this time of not knowing that's hard but at least you know more than last week so I suspect you all are feeling better. So sorry about your son. Goodness, what bad luck! Sounds like you all like and trust your doctors which is a huge blessing. Please keep us informed and know your family is in our thoughts.
My husband got the first bit of good news in months. His lab numbers are up 10% which doesn't mean he has beaten hemolytic anemia, but his body has slowed down it's attack on his own red blood cells. That small difference has changed his mood and he tells me how much better he feels. We'll see if it continues to go up next week.
I saw my plastic surgeon today to discuss exactly what he will do in the upcoming Sept. 19th surgery #5. I was looking forward so much to the fat grafting but he has taken that off the table for now. He is going to have to work on my left side some more and doesn't want to do the fat grafting unless we have completely fixed the damage done by the infection nearly a year ago now. So there will be a surgery #6, probably in early December. <sigh>
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ucfmom - sounds like you have it all wired and I am glad that you have Moffitt in the back pocket. I had a tumor removed there from my calf that normally occurs in the torso, so I know what you mean about finding something in an unusual location. I am hopeful that your DH only has the one location and you can go from there. My oncologist was initially dismayed about my family history, but I am adopted so there are no genetic links. There are more likely to be environmental links though - we were all downwinders from a radiation accident that happened about six months prior to moving into our brand new house. I was three and my brother was seven. We were both diagnosed with cancer in our mid 50's, I don't think that is a coincidence. On our street of ten houses there is liver, stomach, lung, bile duct, breast and blood cancer. Those are just the houses I know about - others moved away and we lost touch. I can ask my friend for some more info on her dad's lymphoma. She and I met at work at Florida Hospital and her dad had already been treated so I don't have that many details, but would be happy to ask, and also ask which physicians treated him. I am so sorry your son has also dealt with lymphoma - sheesh! You all have had enough!
Sandra - yay for DH's improvement! Glad he is feeling better. I will have a new TE in Oct., but may exchange again by December since my PS does weekly fills, so maybe we will be surgery sisters again, lol!
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Sandra and specialk will it ever end? I know it will, just getting impatient.
I think if I get really lucky and finish healing quickly, I might get my next stage in December. I can only hope. But in reality it will probably be extended into next year. Was hoping to get lucky and not have to max out my out of pocket share again. Three years in a row now. Oh well it is only money; but would much rather spend it on more vacations.
Sandra I hope your DH continues to improve.
Ucfmom I am praying for strength for you and hubby to get through the testing and waiting time for results. Hopefully it will bring good news and easier treatment plans.
I will be going to my GP today for a different problem. Sunday, I thought I had a gastritis attack. Ate Fajitas and probably more than I needed. So suffered through the night and took some meds I was given last Thanksgiving for an attack. All week I have stayed bloated, unable to eat more than a few bites at a time. Now my entire abdominal area is sore to touch and getting hard to take real deep breaths. I am swollen all the way up to my rib cage. My right side is very sore to the touch and not so much the left side. Mentally just need to check out those organs on the right side. I took pain pills last night to just get some sleep. Afraid to wait it out over the weekend, don't want to have to go to ER if things get bad. Wish me luck for some relief and answers.
Hope everyone has a great weekend. To those doing their exchanges I am praying for easy recoveries.
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jbdayton - you poor thing! Hope the GP has answers, you sound uncomfortable.
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Thanks specialk , I am miserable, appointment at 2:30.
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Could you maybe have a bowel obstruction? Please let us know how your appt goes and what your doc says.
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Jbdayton, will it ever go your way? No one should have to go through so much. It's just not fair. (Of course, as we well know, we aren't the luckiest of women and fair has nothing to do with it.) I'm glad you didn't decide to tough it out over the weekend and will be anxious to hear what your doctor says.
SpecialK, you must be right about the environmental factor. I'm surprised they don't have the people from your street on some kind of radar somewhere. (Maybe they do...cue music from Jaws.) Shame on me, it isn't funny. We have lots of high level attention on areas on the south side of San Antonio near the old Kelly AFB. Many women have had babies with deformities...far above the national averages. The cancer rates are way too high and like your family, clustered along certain streets. Of course the official word is that it is coincidence but that's obviously a lie.
Girls, I think we ARE destined to be surgery sisters again. Wouldn't it be nice if it was all good news this time?
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It could be adding to it. Last BM Tuesday but was already swollen and not gassy. TMI. Started taking Colace 2 days ago just in case. Will follow up shortly. Actually hoping it could be something as simple as constipation. Talk shortly.
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Sandra - it was actually deemed a cancer cluster and there was a class action suit that was settled, but it was before the diagnoses of my family. Here is a link to the incident:
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I also did 1 breast with temporary implant(alloderm) in March, the implant with alloderm is very uncomfortable. I'm doing a right mastectomy and bilateral hip flap reconstruction next Wednesday, I will let you know how it goes. I was told that implants are rarely successful because when you do a mastectomy it takes away what Mother Nature has there to support the implants. I'm not sure what the Dr meant, I am a nurse and can't figure out what they would remove that would help support the implants though. If anyone knows please post. My implant is under my pectoral muscle to hold it in place and I would not want to live with this permanently.
D
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Went to GP then to get a CT scan. Dr called and told me to get to a hospital that does emergency surgery. I am at the ER and they will be doing a gall bladder surgery shortly. It is very inflamed.
Guess I will follow up later. Love you guys.
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jbdayton- holy moly! Not the kind of call you want to get. Sending you healing vibes and well wishes that this all goes smoothly. Keep us posted. Hang in there!!
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jbdayton - I am so glad you went, and your gut was telling you something was wrong - no pun intended! So sorry that you are going to require a surgery, but all in all, I hope this is a relatively easy one. Hang in there and know we are rooting for you!
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jbdayton, I hope all is ok. Sorry this is happening to you!
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jbayton, so glad you listened to that little voice that told you something wasn't right.
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