Unpleasantly Surprised...

[Jesse L.]

I can't believe this... So, two weeks after my first infusion of Carboplatin/Alimta and things are happening; unfortunately none of them good.

First off, my Oncologist had me scheduled for a heart monitor because I had stated that I had two instances since this all started (12/15/20) where my heart seemed to be racing, just for a minute or two but racing nonetheless. So on 4/15 I got this heart monitor about the size of an old flip phone with 4 leads that attach to replaceable stickie clips on the torso. Oh sure they told me I could take the "octopus" off and take a shower daily, but what a pain in the a**. Not only that, but I'm forever changing the battery because the monitor sends a signal constantly (same as a cell phone) and since I live in a lousy cell signal area, the battery don't last but 18 hours tops. Now imagine this; the first day I get the thing it wakes me up in the early morning with an alarm because the battery was low... On top of all this they tell me it's necessary to wear this thing for thirty days in order to be able to catch any AFIB instances. A pain in the a** is an understatement!!!

Secondly, this last Friday night my left leg below the knee starts swelling up just like what happened when I developed a Bakers cyst on the back of the knee in later 2013. Back then I had called the VA Nurse Line and they told me to come to Milwaukee (100 miles away) immediately and get checked by ultrasound for DVT (apparently very dangerous). Well it wasn't DVT then but rather a torn meniscus and frayed cartilage which I later got fixed through scoping that knee. So I'm thinking this time it's either the chemotherapy has caused another Bakers cyst or my knee is blown again. This morning I call my chemotherapy nurse navigator and she gets my PCP to authorize x-rays for my knee at the Green Bay VA Clinic (much closer, only 30 miles). OK...so I go to the clinic today and get my knee x-rayed right away and while I was there they also required to just do a quick ultrasound to make sure it wasn't DVT. I got done with the ultrasound just after 4 in the afternoon and as I was leaving the clinic parking lot, I got a call from the Milwaukee VA telling me I had DVT and I had to get to an ER ASAP. So, I coordinate  with the Milwaukee VA to go to the Aurora Hospital ER closest to where I live. I get there and long story short I am now taking ELIQUIS as a blood thinner to resolve the clot in my leg. I was informed by the ER Dr. that cancer and or chemotherapy or both can cause blood clots. Oh great...now I have to be concerned about that as well... Of course now when I complain to the VA that they always jump to tne worst possible scenario, they'll quickly point out this instance.  WT*, I can't win!! 

And lastly, as if my leg wasn't bothersome enough, I had a filling in my teeth break on Saturday night. Of course I inform my Nurse Navigator at the Green Bay VA of this and she tells me that will have to be fixed before chemotherapy can continue. Now here's the problem... The tooth in which the filling came from is so minimal that it most likely will not be able to be fixed again. There will be no choice then but to pull the tooth. And this should be great with me now being on a blood thinner... I asked the ER Dr. if that would be a problem with me being on ELIQUIS now, but she stated it would be alright excepting that it would bleed a little longer. So luckily enough I was able to schedule an appointment with my dentist for tomorrow morning. My teeth are not great and as such this will be the second tooth he will have to pull. I will admit though he is fast and good at it even though I just shiver at going to the dentist, any dentist for any reason, period!!

I swear if there is one more thing that can go wrong, it probably will. Between the cancer, DVT, and maybe AFIB I've got to wonder if I'm going to make it another year. It just grates me that as of 12/14/20 I was healthy as as can be and since then I don't know what happened. I mean I'm 64 and not 84...but at this rate I'm getting a lot older by leaps and bounds daily! WT*!!!😡 

 

[BridgetO]

Geez Louise! You've been going through a lot! I'm so sorry. Getting old is not for the faint of heart -- I'm 75 and I've survived three cancers.  Hang in there.  You can do this.

[LexieCat]

I get it, Jesse--when it rains, it pours. Between my cancer, falling off my bed and breaking my clavicle, injuring my eye and having cataract surgery that didn't turn out well, and having severe arthritis pain in my hip, it does feel like everything falls apart at once. Like the warranty just ran out.

Hang in there, keep putting one foot in front of another. Eventually those other issues will resolve. 

I'll tell ya, I'm SUPER grateful I had my full mouth implants in between my surgery in 2017 and my recurrence last year--implants don't play nice with chemo.

[TJM]

Wow. Rough. FWIW...all my fillings have fallen out. I blame treatment, but never told my doctors. No pain....so I will get fixed later.

Your due for a break dude. You'll get one eventually.

Peace

Tom

[Jesse L.]

An update...

Yes, I'm still wearing the "octupus" as in the heart monitor I have to check for AFIB. although I'm still questioning why I have to wear the thing for 30 days. Really, honestly, if I have AFIB, don't you think that would show up in a lot less time than that? It's frustrating, but now I suppose that since the VA was proven right about the DVT thing, they're not about to agree with me if I request to wear it a shorter period. The frustration continues...😔

My Nurse Navigator called me today from the Green Bay VA and told me that through the loop she found out that the blood clot in my leg was big...didn't say how big, but just big. And not only that, she also told me that there was always a 50/50 chance I could have developed DVT as a side effect from my type of cancer and chemotherapy, but they never informed me of that possibility. Something that important and they didn't mention it? Oh boy!!! It scares me some that I could have thrown that clot over the weekend and now my significant other would be planning my funeral. I guess it wasn't my time yet after all. And now I'm on ELIQUIS and by what I'm told that will definitely take care of the issue, although from what I've read it could take weeks to a few months to resolve the clot in my leg completely. Now I don't know for sure if I can go walking again until that happens...as it is my left leg below the knee is still swollen some, but it is better than it was. According to the internet, they say it's good to walk for DVT, but I'm told my Oncologist is going to call me tomorrow and I'll ask her if i can start putting on the miles again. I miss my walking miles for sure and with the weather getting nicer I miss it even more.

I went to my dentist today and he was surprisingly interested in my problems. After I explained everything to him, he was genuinely moved and quickly derived a novel idea to fix my tooth. After he checked and he agreed with me that my tooth was indeed shot, he told me that he could give me a small temporary filling for now and after my treatments are all done, he could pull the tooth later. So, no freezing was needed and after about 10 minutes of grinding and filling it was done. I'm super happy with that and I really like this guy as my dentist. And best of all he didn't charge me a penny for anything...now that's class!☺

We'll see what the future holds...it's just got to get better...!! 

[LexieCat]

Your dentist sounds great. For the first time in my life I have one I love, too. Ironically, he pulled every tooth in my head, but did an amazing job with the implants and I couldn't be happier. Just have to go for a regular cleaning every 4 months and an annual X-ray. And he and his staff, too, have been very concerned about my health and do everything they can to make it all easier. 

Hope the clot resolves soon. Hang in there.

[Jesse L.]

Hey, I have some questions concerning implants...and who better to ask. I've thought of getting implants in the past, but I've been put off for several reasons:

The biggest reason is if you listen to the TV commercials, they say you can have a full set of implants done in a single day. I just can't believe that and in fact that sounds like pure horse hockey to me. More like your teeth get ripped out, then it takes six months or better for the gums to heal. Then the posts are installed in the jaw bone and that takes another six months to a year plus to heal. Finally after nearly two years plus of prep the darling implants are installed and that's the part that only takes a day. They make it sound so easy with everyone smiling and next to no problems mentioned at all.

And what of the pain...how much is there? Discomfort...how much?? How does one get any nutritious food down with no teeth for well over a year? I don't think I'm into eating soup and gumming crackers (if thats even possible) for a year plus...

As to the cost, I'm not so concerned about that, but I have heard that it can cost north of $45,000 for a full set of teeth. I don't know if that's for real or not or is there even more expense than that??? 

And finally what about possible problems?

I would appreciate some real information rather than the clap trap BS they put in theIr colorful fancy brochures where everyone is smiling and happy and surrounded by wonderful foodstuffs, etc. Horse hockey!!!  

[LexieCat]

Well, I had my implants done by a world-class implant dentist--he trains others all over the world and is a professor at U. Penn Dental School. My implants cost the equivalent of two new cars--it was $75,000. I took out a personal loan, put all the payments on my travel rewards card (accruing enough points to pay for my RT airfare to Vietnam for vacation) and took a medical deduction on my taxes. That offset a bit of the financial pain.

That said, you can get them for less money but I'd advise researching the dentist carefully.

Mine were done in two procedures--first lower then upper. All teeth extracted, implants placed same day and temporary teeth (which weren't dazzling but they served the purpose) the same day. You can chew and eat right away. No BS. The lower and upper were a month/6  weeks or so apart.

The implants continue to heal for a few months. During that time, you would be fitted for the permanent teeth--make sure color, shape, etc. are all good. Final teeth were probably about 4-5 months from the initial procedure. But NEVER without teeth. And the cost was all-inclusive--all the visits, creating the new teeth, etc.

The only serious pain was with the initial extractions. I looked like I'd gone a few rounds in the ring for a few days after each set of extractions. But I healed relatively quickly and the pain/bruising resolved in a week or so. 

I couldn't be happier with mine--seriously, one of the best things I ever did for myself. 

ETA: You will be able to eat right away, but not everything. They told me I couldn't eat anything that went "crunch" until it was completely healed (a few months). But certainly not restricted to mushy/liquid diet. I could eat meat, sandwiches, etc, but not apples, nuts, carrots, etc.

[LexieCat]

Oh, one thing to know, though--the dentist may not do implants as long as you're getting chemo. Chemo interferes with the healing of the bone around the implants. Once you're done, though (might be a few months), it should be doable.

[Jesse L.]

Well, I'll have to give the whole thing some serious thought. I have time as I was darn sure I wasn't going to be able to get implants while on chemotherapy...or for that matter some time after. I talked to the oncologist today and I'll be on blood thinners for at least all the time chemotherapy has any affect at all on me. But then my nurse navigator told me that I could be on blood thinners for even a year after chemotherapy. That's one more regular test I'll be getting once the chemotherapy is over; an ultrasound to check for blood clots. Crap...more tests! In any case I'm sure that I won't be getting implants till my "conditions" are all resolved. 

As it is the tooth they'll pull is no. 4 that I'll be missing in my mouth and the rest consist of 8 crowns and 20 other teeth with more fillings than you can imagine. Right now I'm down to damn near gumming my food on the right side and the left is quickly deteriorating as well.

At some point it will be more than just thought I'll have to put into this if I want to eat food again... As to the cost, I really don't care about that...I've got that kind of money. I either spend it now or wait till my beneficiaries appreciate it less...no decision there.

Oh well, something else to ponder...

   

[LexieCat]

It's worth considering, seriously. My mouth was in virtually the same condition as what you're describing. And once you're done with chemo, it never hurts to start researching dentists and having a consult. If you PM me, I can give you a website that is great on making decisions/finding a doctor. I posted about my experience there. There are a few doctors--one I can think of in Texas and one in Nevada--who do a high volume of implants and whose patients seem extremely satisfied. Much more affordable than what I had. There were also lots of people who traveled to Mexico or elsewhere abroad. I was more concerned about having followup care nearby if I had any issues, so that had no appeal for me.

But I can almost guarantee, if you find a good doctor, you will never regret it. 

[LouT]

Jesse,

You've definitely been through the mill, haven't you?  The implants are smart...I've had a number of them done (separately not as an upper/lower that they now do) and they are pretty much a permanent tooth that you don't have to worry about in the future.  But there is time for all that and you need to stay focused on the "here and now" so you can get back to "normal" and then you can seriously look at your options.  The biggest priority right now is getting that DVT reduced and eliminated. The heart palpitations and may be easier to control with meds, but let's see what is transient and what may be more chronic.

Lou