Update on the battle

[MandysMom]

Thought it is time for an update on us. As most know, my hubby, Mel, has been battling a very rare palate tumor since June of 2013. Now in 2nd recurrence battle. Having won over prostate cancer in the intervening time. Cancer has reappeared in his chest beginning late last year, growing unfortunately. After a chest biopsy and numerous scans, and being told maybe then, I got nothing, by a Fellow ( a Dr taking extra training beyond normal specialty training) several times, I got fed up and fired him. Due to encouragement of a couple of high school friends plus a friend of one who spent a career as a geneticist, I got Mel assigned to a attending physician at UCD who seems determined to help. We are in midst of testing, haing been approved for a two drug ( oral not iv) trial in its latter stages of testing. He needs a chest biopsy and EKG, plus a physical and blood tests before, hopefully within a week he will begin the chemo drugs. That will entail a all day stay at UCD to have blood drawn before and after first dose of the drugs, a total of ( yikes) 10 blood draws through the day! He will be on a cycle of taking the drugs at home or at the hospital,some days with being there for blood draws some not. A couple of weeks in he will have a scan which will either show the two largest tumors are either same, smaller or larger. As long as they are not a lot larger, the cycles of chemo will continue. The drugs are in 21 day cycles I think she said with a week off between. Fortunately at this dose, we are told most have only mild side effects such as nausea, without vomiting, and fatigue. We shall see. He remains hurting from arthritis and can't take conventional pain meds for that so takes powdered cannabis in his morning and evening puréed meals which he says makes that tolerable. What has been difficult is the cancer is irritating the lining of his chest where the tumor is growing ( not IN lungs but around them in pleural lining of chest) it is producing a lot of fluid which is pushing both on nerves and on his right lung. It's caused a lot of pain making sleep difficult but the new Dr ordered a Lidocaine patch to apply nightly for 12 hours ( longer produces tolerance so it won't work). It helps some, but pulmonary Dr plans tomorrow to drain some fluid to see if that reduces his pain by reducing the pressure. It will be a busy week as radiology tries to fit in the CT guided biopsy and the chest Dr does drainage and maybe a trip for physical and EKG and labs. Mel continues to putter around the house when he feels up to it and likes to help with cooking. He is maintaining his weight and looks pretty good but pain can wear you down. He is not ready to give up by any means. Neither am I. I have another oncologist standing by away from UCD if this Dr stumbles or this trial doesn't work. Sometime in all this I hope to get my van across town to the generator repair place to get that done. I want my van boondock capable for just in case. I have solar but with this our 23rd day this summer at or above 100 and at least 5 more 100 this week!! I would need generator for AC. I so hoped we could enjoy alittke trip like a weekend but just haven't done that because of his ongoing pain. The good news is, if these drugs (one taken first helps keep the cancer killing drug in his system longer, thus killing more cancer), help we will know soon as a few weeks, then he can stay on them indefinitely, as long as they seem to help. Also every month and year we buy brings other drugs that may help if this stops working. As the new DR, who I really like, says, it's about slowing or hopefully stopping growth and fluid production of this cancer so he can live with it on a chronic basis since its unlikely it can be completely cured- its a very nasty bugger!
I do my best to get rest and go to Curves and keep my health up. We both began the very low carb Ketogenic diet in May, him because it has shown promise in early study in slowing or stopping some cancers, and me to finally lose the weight I have put on over many years. His weight is where he wants it and his insulin needs for his type 1 diabetes has decreased greatly ( insulin pushes glucose into cells including cancer cells) so his insulin needs have dropped more than 60%! That's a very good thing ! His endocrinologist was so pleased. And yet the stupid American Diabetes Associaton continues to push 40 to 70 carbs a meal! But that's another soap box of mine!! LOL meanwhile I've lost about 23 lbs and counting since Late April!
Velda and Mel plodding along in Roseville in Noethern California

[monik7]

Velda, I admire you and Mel so much. You're doing a great job of keeping up with things and staying on top of what the doctors are doing or not doing. Congrats on the weight loss which should be good as you continue on with this fight. Mel is so lucky to have you and all your knowledge in his corner. Keep your strength up so you can continue to be Mel's most valuable advocate and asset. You both will remain in my prayers.
Sandi

[MandysMom]

Thank you Sandi! It's the battle no one wants but fight on we must.
Velda

[Bethers]

Velda, you and Mel are amazing. I'll be praying that this new approach works, and works well.

[Rufflesgurl]

Good job Velda. I hope you keep your strength up so you can continue to be the super care giver that Mel needs!

Linda

[mtngal]

You are a phenomenal team!

[BarbaraRose]

So glad you found new doctors and have renewed hope of a successful treatment! You are both very strong, determined people! Never give up!

[Liz]

Wishing you strength for the days ahead.

[snowball]

was glad to see what is being done...hope it is what is needed and will help...my prayers go out to you and Mel
sheila

[MandysMom]

Thank you everyone for your support and thoughts. Always appreciated.
Velda

[Irmi]

I keep you both constantly in my prayers. I try to keep our carbs at under 40 or less a day, but we are healthy. So I can't say. Hope things continue on a positive note.

[SoCalGalcas]

Thanks for the great update. I've been wondering about you and Mel. Good luck with the new Doc. Lyn

[Queen]

Thinking of you and hoping things ease up on you both now!

[MandysMom]

Yesterday the pulmonary Dr drained 750 ml from the right side of Mel's chest. He also biopsied the lesion he could find on ultrasound, not the main tumor because that was below where he needed to enter for fluid. If those are adequate once under microscope for the clinical trial then we move to CT, EKG, labs, and physical then begin his chemo. Should know in a few days if we need to still have radiology do a lower biopsy. Mel got some relief but Dr did not drain completely because he wanted to leave a cushion to protect lung if another lower biopsy is needed and remaining fluid can be drained then. If no biopsy he will monitor fluid and remove later as needed. Mel slept slightly better last night or it appeared so to me. One day at a time here. We were both tired and napped yesterday. Off to Costco this morning for fuel and food.
Velda

[grammynmaggie]

You and Mel are amazing for sure... so glad you're not giving up miracles happen all the time thanks for the update