(Delayed) March Check-In

[CancerSux]

Hi all:

Sorry that it is already the 8th and I am just now posting the check-in Sometimes life gets in the way ...

No list tonight, but how is it all going? I know we have a lot of people in treatment right now, some big surveillance visits coming up (Kimmy, isn't Jason's this month? 2 yrs post-HDC, right?), etc. So ... I'm playing the lazy card and not cheating/making a list.

For Kel - his 8 month checkup passed off without a hitch and the oncologist is moving him to every 2 months - so he should get CT, Xray and B/W at the beginning of May (and hopefully in Oxford with us rather that 1500 miles away!).

I want to send an extra big virtual hug and support to Kirsten and Mike (KirstenMS) and Matt and Cheryl (Matt's Mom) on the recent news of both Mike and Matt failing G/T salvage therapy. I know Kirsten and Mike are still reviewing their options and deciding, primarily between FOLFOX + flavorpiridol, GAMEC, or MEA (more on this below). I am thinking of you guys, and will help wherever I can.

Cheryl and I had a long talk today and she isn't really up to checking in much lately. All of the details are on her caringbridge site, but Matt's hCG is at its highest and after reviewing the options with his local oncologist and with IU, they've decided to go with a new protocol that was tested in Japan, called MEA (linked here). With Cheryl's insight, I will pass on how Matt does here.

Best wishes to all caregivers, family members, friends, and patients alike,
T

[Kat]

Tracy, don't be so hard on yourself---it's the 8th and I completely forgot to pay the mortgage until today, so I think I'll let you off the hook. ;-)

I've got a good question to pose to the wives/girlfriends/partners out there. My husband was referred to have his semen analysis done over a year ago. He has never done it. He just won't do it. So, he hasn't had a semen analysis since he banked it after his I/O and before his RPLND. I have run out of thoughtful and sensitive ways to convince him to just do it and get it over with. Any ideas? Bribery? Blackmail? You'd think the 40 bucks a month we spend on the sperm bank would be enough bribery to get him to do it, but alas, it is not.

[hbr777]

Good news for Kel! One more sigh of relief. And, it is nice to move out the appointments a few months. It feels like real progress when you go from 3 to 6 month follow ups.

Thanks for posting these updates.

I feel guilty about posting good news, since Kirsten, and Cheryl, and now RiosLove are struggling. Rios posted today, and I will add her to my prayer/good vibe list. I have been thinking about Kirsten and Cheryl every day (some times several times a day). It is hard not to.

Luis finally had his bloodwork - he had been traveling for business a lot and was blowing off appointments. The tumor markers were all perfect - b-Hcg is undetectable at 0.5. He has a CT scan at the beginning of May.

How is everyone doing this month?

[T1130]

Hey everybody,

I dont always check in but I check this site daily. My husband was also moved to every two months now, but his last blood draw showed an increase in the LDH. They retested now we are waiting on results.

Tracy

[AustinsMom]

Hi Tracy,

So good of you to post all this info and keep track of everyone......like the little "Mother Hen" that you are.

As Heidi said, it's difficult to add any good news when you see the pain and discouraging results others are receiving. We all want everybody to have positive outcomes. It just isn't fair.....Cancer just is NOT FAIR.

I have no advice to offer, but will keep all those suffering in my thoughts and prayers.

Diane

[SiRNita]

Hello, I've been on this website before but never felt led to post. Now as the 4th round of BEP winds down for my husband and he gears up for the RPLND in 6 weeks I am eager to have another support network where I don't have to always have a smile on (although I will always try to be positive).

Right now my husband is pretty anemic (Hgb 9.0 right now, it's just been dropping) and he is having some tough times... he is training to be a doctor and it is hard to be on the other side. But overall things seem to be going okay - he hasn't had to be hospitalized yet, knock on wood. Just having problems with self image and a persistent cough that does not seem to be linked to bleo. And GERD from the steroids.

Anyway, look forward to getting to know y'all and thanks for being such a supportive community.

[CancerSux]

SiRNita,

Welcome to our network, chalk full of support. With your husband having 4xBEP, I am assuming that he was stage III intermediate or poor prognosis? So was my husband, so I understand entirely where you are with the anemia, planning for the RPLND, etc. I see he is in biochemical remission, are there still nodes? Will his RPLND be at Mayo there?

I am eager to have another support network where I don't have to always have a smile on (although I will always try to be positive).

Feel free to exchange your smile for a scream here, we get it and will often scream with you. If you need any tips on the RPLND, let us know - a lot of us have supported our co-warriors through it.

Here for you,
Tracy

p.s. my husband had the cough for-ever!! 8 months post-RPLND and 9+ months post any chemo it has resolved.

[MrsB]

Welcome SiRNita Going thru treatment is rough. My husband ended up hospitalized twice during his 3 rounds of chemo, once for a bowel issue and again for a respiratory infection.

All is going well here. Gene was moved from every month checkups to every 3 months now so yay for that! It has been over a year now since he was diagnosed.

[SiRNita]

MrsB, I'm glad your husband's remission is progressing... what a tough way to start!!

Tracy, yes, he was stage IIIB intermediate risk, large mass around the IVC. They haven't reimaged and won't until right before the surgery. Everything has been and will be at Mayo since that's how our insurance works I'm glad to hear he's not the only one with a lingering cough, he's also had problems with hypersalivation - physical? psychological? who knows...

[CancerSux]

he was stage IIIB intermediate risk, large mass around the IVC

Kel's RP mass was wrapped around his IVC too - choking it off so much that he formed a thrombus and had to be on warfarin (or as I like to remind him, rat poison) until his RPLND

They haven't reimaged and won't until right before the surgery.

Hmmmm, that is quite interesting. How do they know that either a - the mass is not completely gone (in which case they still might suggest the RPLND) or more importantly b - there are not other remaining masses (unlikely since markers are normal, but if there were other masses than RPLND would not be indicated. I don't know that I've heard of no imaging before the RPLND decision ...

I'm glad to hear he's not the only one with a lingering cough

Kel's cough was so persistent that he had a chest X-ray done a few months post-RPLND just in case.

[SiRNita]

Thrombus and warfarin - bummer!!

I guess they figure if they re-image right before the prospective RPLND, they will know exactly where to go? The oncologist gave it a 90% of doing it. Kris has the CT at 8 on a Wednesday and then a meeting with the doctor that afternoon to go over the results. Then from what we've heard surgery the next day (which happens to be my graduation) .

Kris is having a lot of very thick saliva, which is of course impacting his lifestyle and morale. Have you heard of this happening to anyone else? He is wondering if it might be related to peripheral neuropathy of his parotid glands. Anyway he cannot swallow it and has to spit it out, filling bottles. I am getting worried about the psychological impact of all of that - it is making him very depressed. And now he has developed major mouth ulcers - I called the docs and am going to go pick up the magic mouthwash. I made him a smoothie but the smoothie mix had pineapple in it, causing major pain... didn't even think about it!

OK thanks for letting me vent...
~Ari

[CancerSux]

Ari,

It sounds like mucositis (not related to peripheral neuropathy). John (TCDestroyer) had it, I think, when he went through HDC ... maybe he can comment on some remedies, but a lot of what will help is the mouthwash and using it every time after he eats anything. And drinking a lot of water. Maybe a mucinex too, to thin out the saliva, but check with the oncologist on that one. I can't think of any drug:drug interactions, but always good to check.

For the RPLND - they can really decide one day and have surgery the next? Wow. We usually see (and our experience) was a few weeks out at least. I am sure that since it is your graduation day, they could make it early the next week if you wanted. What are you graduating from/with?

Oh, and on the imaging ... I know for Kel he had one post-chemo that was supposed to be used in the decision to have the surgery or not (he still had rising markers, so went to salvage chemo first, but that never worked), and then he had another CT scan a week or so before surgery so that they could make sure there were no other masses that would indicate HDC over RPLND, and that they could see the margins, etc.

In any downtime you have next week (ha!) let us know the plan,
Tracy

[SiRNita]

Thanks Tracy,

The magic mouthwash is helping with the pain of the sores so he is eating more. We are going to maybe look into a scopolamine patch for the hypersalivation (will try to talk to the doctor about it tomorrow). Mayo put him on the list for the surgery on that Thursday (May 10), if they decide not to do the RPLND after seeing the CT I guess they will just take him off the list. I might see if they can bump it back to Friday so I can walk but ultimately this is my 3rd graduation and the surgery IS more important.

I will hopefully be getting my ADN so I can be an RN, assuming I survive the next seven weeks of pediatrics and ER/ICU class. It will be like drinking from a firehose. My husband will be doing a rotation next Monday so I really hope he is feeling better by next week...

Thanks for the advice and support!

~Ari

[TC Destroyer]

Ari,

It sounds like mucositis (not related to peripheral neuropathy). John (TCDestroyer) had it, I think, when he went through HDC ... maybe he can comment on some remedies, but a lot of what will help is the mouthwash and using it every time after he eats anything. And drinking a lot of water.

Tracy is right. Unfortunately once you have mucositis, you have to wait for blood counts to recover before it will go away. The mouthwash is only to prevent or reduce it before it happens. My first round, I was able to stave off the mucocitis in my mouth, but could not save my throat and stomach. I literally rinsed and brushed my mouth after ANYTHING except water entered it. It is grueling, but Mucositis is worse. They do offer a numbing rinse and also a pain reliever, these have limited affectiveness though. power through and switch to Ensure or another health drink until they are gone. I was able to power down mashed potatoes and mac and cheese.

I know some people get on a morphine pump the pain becomes so bad. I did not let mine get this far.

Maybe a mucinex too, to thin out the saliva, but check with the oncologist on that one. I can't think of any drug:drug interactions, but always good to check.

I have not heard of this, makes sense, but ask your doctor before attempting this idea.

[SiRNita]

Kris had his last bleo today!! The mouthwash helped and Advil has helped a lot with the pain as well. The scopolamine patch has helped a lot with the hypersalivation - he's able to swallow it now.

His Hgb is 8.4, platelets 88... I hope these counts start going up again soon!!

~Ari

[CancerSux]

The mouthwash helped and Advil has helped a lot with the pain as well. The scopolamine patch has helped a lot with the hypersalivation - he's able to swallow it now.

Fantastic!! And yeah to the the last Bleo dose!

So it sound like there is no plan on imaging in between now and May 8th right before the planned RPLND? What about markers - will they be drawing those in between?

[Pattytricia]

Hi,
This Monday my son will go for his 3 month follow-up. Hoping for another good report. My thoughts are will all of you going through difficult times. And, Tracy, thanks for doing the monthly check-ins. It helps to share and know that people care. Congratulations to all those who have gotten good reports.
Take care.

[SiRNita]

Kris is on the mend from his chemo - I think he's starting to feel better although he still has this cough, which he thinks may be GERD-related. He's still wearing the scopolamine patch, he tried to get off it earlier this week and the salivation and such returned quickly, so we're going to stay on that as long as he needs it. He has bloodwork, chest x-ray and dr's appointment next week - hopefully those tumor markers will stay down!! If it looks good, he'll have the CT, dr's appointment and probably surgery in May. I decided to go ahead and go to my graduation even though it's the same day as his potential surgery - his mom will be in town, and all my grandparents are coming into town... it will be a little crazy.

Will keep you updated once we know more!

[CancerSux]

..... it willmore little crazy!!!

This tc life is sometimes a bit crazy!! I think I am just now getting back to a slow pace of life ... Well, ad slow as my life gets!

Pattytricia - how did the 3 month results look? I hope good!

Fed and I are both at a national cancer research meeting (even going to see Einhorn tomorrow), so I will post more after the meeting.

T

[Pattytricia]

Hope all is well at the conference. We got good results for ex-rays and blood work - AFP still at 2. Back in 3 months for MRI's and more blood. Thanks again for all you do.