Friday thoughts

Today is the 3 year anniversary of Mary’s lymph node biopsy. She has been dead for 11 months now. I have a patient from the oncologist who was referred to me for an urgent biopsy (same as Mary 3 yes ago) the surgery is being delayed by pre chemo testing of cardiac function with an Echocardiogram and a MUGA. Scan. ( Same as Mary) I went down to see the patient preoperatively ( surgery was supposed to be in 30 minutes) only to find out she was elsewhere getting tested. My sense of “Lets get this done on a reasonable schedule” was totally reset when I went to Nuclear Med to talk with the patient pre op, and suddenly got the Deja Vu of 3 years ago, when I was not the doctor, but the family member with the sense of urgency, the anxiety of the unknown and the knowledge that there was not going to be a long term survival, just an alteration in lifespan by transplant and chemo and immune therapy and radiation therapy. We were in Nuc Med and echocardiography for the same teats at the time of her port placement and lymph node biopsy. Those were long and scary days. Mary was strong and confident that she was making the right choices, i was supportive but realistic that there were no great choices. Instead of 3 months with no treatment, and a predicted 18 months of life with chemo, she got 26 months; 3 or 4 of those month being relatively good. So today I wait for the scans to be completed and will do my piece of the puzzle to help this 40 yr old woman get a chance at some more life. Some days I forget which side of this cancer equation I am working on, today is one of those. My deepest thanks to my partner , Mark Schmelzel MD FACS Ret, and Dr Mir Alikhan for their support on this pathway. I haven’t forgotten their support and professional care. I also have to thank Dr. Hussein Zaioor, the astute clinician, who saw what others did not and got Mary off the wrong treatment and on to the right path. My thanks also to the friends and family who have been supportive along the way. Sent from my iPad

Thank you to all of our friends for the words of support and the kind comments.  

We do not know what the new year holds for any of us, but happy New Year to all 

And to all a Good Night 

I haven’t put much on this blog for a long while, because there was nothing original to say.   But this morning I did have this thought bother me.

What do you get someone for their last birthday? That is the question that has been going through my mind all day today.

Mary turns 58 today.   She will not be alive next year, and probably will not live through this winter.   She has been battling with T Cell lymphoma for more than two years. Symptoms started 26 months ago, diagnosis 25 months ago, Chemo started Dec 1^st 2014. On December 1^st of this year she was in Oncology getting a new type of Chemo , again.

She has had about 4 or 5 months of good quality of life in that time.

She has had 3 or 4 months where she didn’t get some form of chemotherapy.

She went most of the month of April, or was it May, of this year with no medications at all.   Then this relentless tumor she has made her start itching again, the rash came back, and then her whole body was covered in grape sized tumors just beneath the skin.

That’s when she started immunotherapy, with Opdivo the latest and greatest drug according to the T V ads.   It caused some odd skin changes, but melted away the tumors. It melted away 5 of them so well that her skin disappeared where they had been, and she is still under treatment for those ulcers.

It seemed like the tumor was in remission, but then the rash reappeared, and she had to change to the last drug on the list, and weekly chemo treatments.

Today on her 58^th birthday she had wound therapy followed by chemotherapy and now she is in napping.

Her steroid dose is going to be tripled.

We plan on a family vacation with all her siblings to St. Thomas in 10 days, for a week.   We had large family gatherings on Thanksgiving and Christmas so everyone could visit.

About 8 weeks ago we had all her siblings down to Sterling to say goodbye for a last time, when it looked like she was going to die that week. The current chemo drug, Pralatrexate, stopped that and reveresed her delerium and near coma, and gave her enough strength that she didn’t need a walker anymore to get around the house.

But now she is getting weaker again, and needed a wheelchair for her clinic visit for the first time in months. She eats more than I do, and loses weight.

She stated last week that she wanted today’s dose of chemo to be her last.

If that is the case, there has never been more than 6 weeks without symptoms, and the tumor will come back, assuming that it is even gone now.

Her PET scan shows that at least 50% of the nodes and solid organ metastatic disease is improved vs 8 weeks ago.   But there are new lesions in the lungs and brain, suggesting some disease progression, even while on weekly chemotherapy.

Her struggle with this disease has been physically and mentally exhausting for her. She is truly at the end of a very long and difficult road.   If she does decide to go off all treatment, once we are back from the caribbean, then it is her choice to do so.

So I guess my birthday present will be to support her decisions, no matter how hard the choices are to live through.

Subject: By way of explanation, status report, mary does not know i am sending this out, but wouldn’t remember anyway.

I’m sending this out as a way of explanation of what has been going on the past couple of weeks with Mary’s treatment so that I don’t have to explain it individually to a whole bunch of people in this level of detail.

Over the last few weeks Mary is had a recurrence of her tumor despite treatment with the chemotherapy agent called Romidepsin which inhibits the release of histones from DNA to start the cycle of cell reproduction in T cells.
Since that chemotherapy failed she was started on a new agent called Optiva, which is a PD-1 inhibitor. This agent activates the immune system to have natural killer T cells attacked the tumor, unfortunately the tumor is made out of T cells is well and this is an experimental therapy.
After the first dose she had a very significant and painful flare of all of her subcutaneous tumors. 3 weeks ago she probably had a dozen subcutaneous tumors, a week ago she probably had 300 and after her trip to Portland recently she came back with close to 1000 of the small tumors under the skin.
The consultant oncologist in Northwestern University says it is not unusual to have a”flare”’ after the first dose or 2 of Optiva. Today, July 26, she is getting her second dose of Optiva.
He (the local oncologist, Dr Alikhan) actually discussed starting her on a weekly dose of chemotherapy in addition to the immune therapy Optiva. And that weekly dose would be a drug Pralatrexate. This is also a histone Deacetylase inhibitor.
Over this last weekend we gave strong consideration to the options of no further therapy versus continuing therapy. And after a long discussion with Mary’s personal physician decided that if her labs were improved after 1 dose of chemotherapy we would proceed with more doses of chemotherapy, and the oncologist agrees. We also had the opportunity to discuss this plan with Erwin, who Mary trusts as a reasonable voice and insightful friend. Fortunately the oncologist agrees with the current plan.

So that’s where things sit now and if there is continued improvement this will be the plan for the fall.

As of today, things appear to be stable.
Not great, moderate to severe pain under some control, but not progressing by lab criteria.

Thanks to Susan for her offer and insight, as well.

Tom

Vacation
I have never had a vacation quite like the one i started yesterday.
A week in a secluded house on the far reaches of St John, with amazing views, slow persistent breezes, and quiet, except for the ocean and the many different birds.
Mary thinks, and says, this might be her last vacation, and who knows?

It certainly is a gorgeous spot, despite the 12 hour convoluted travel day to get here.

The real vacation is the one MARY told her oncologist she was taking. She told him she was on chemo vacation until further notice.
She had a few symptoms last week at home , but we are both expecting that with her negative ($31,000) PET & 4 levelCT scans 3 wks ago that her rash and itch were dry skin. Fortunately for her, no one in the Caribbean has dry skin.
So we’ll see how long she can stay off her weekly chemotherapy.
It has been going on since November, so it seems logical that it might be more than palliative, since symptoms are currently at the mercy of the caribbean sun and humidity.

Maybe when we return to the midwest in the spring ( starting tomorrow) but lasting here for another week, humidity and heat will return.

typical caribbean breakfast

Living with a calendar for chemotherapy every Tuesday, labs every Monday and scans every 3 months has. Scone the new normal. 

One Tuesday a month is allowed off to ” recover” from chemo, but the otherwise weekly dosing is turning into “weakly”. 

It is difficult to do most tasks when you are constantly anemic, thrombocytopenia, neutropenia and bruised all over. 

CT & PET scans were all negative this week so mary is lobbying for a chemotherapy holiday, at least until symptoms recur. 

We’ll see how that goes. 

One cannot expect to get what you want.

You don’t win the lottery.   Money doesn’t buy happiness.

You can’t always get what you want (as Mick said).

And, no one owes you anything.

So how can you avoid consternation?

Don’t expect those miracles to happen.   They are fairy tales.

Simply liking what you get, is not always the best approach, but managing one’s expectations is more realistic.

Best recent example was our week’s vacation in the Virgin Islands.   We had both looked forward to this since cancelling all our plans for the last 14 months due to cancer. Thinking that the stem cell transplant would have a durable effect against the lymphoma, we planned 3 vacations to the Virgin Islands for this winter.

Just landing there in the plane, seemed like an unreal accomplishment.

Unfortunately mary had a severe sinus infection which could not be controlled, since her chemotherapy kills the lymphocytes that a normal person would normally use to kill the viruses involved. Well she has now had severe nocturnal coughing for 3 weeks, and cannot sleep. That limited her stamina even when the only activity was going to the beach and lunch each day.   We were in paradise, but it was not what we had expected from the “vacation”.

Even today, back home, she cannot even watch the Packers play because Fox has some major SNAFU and cannot broadcast the game.

Fortunately there is radio.   since she is on the couch , lying down though, her sinus drainage is causing incessant coughing.   Similar to the sputtering of the Packer offense, by the way.

I had high expectations for 2014. A new partner, more free time, fewer obligations at work and more home time.   Well, that went in the toilet once mary got her early symptoms in mid summer of 14.   Some times she feels   life like, but there is nothing of the energy that a 50 yr old should have.   2015 was a real slog.

It is difficult, and something that only chronic cancer patients and families can comprehend.   We hope that things will change, but in reality need to expect that while things may get better with her current weekly chemotherapy, there is no cure and relapses   will happen.   I think the biggest shock and disappointment of the year was when the Lymphoma Professor said that 3 – 6 months of disease free survival after transplant was the NORM, not the exception.   Had he told us that before transplant, I don’t think she would have done it.

So rather than hope for sunshine and rainbows in 2016, we are hoping the house doesn’t explode and burn down to the ground.

Happy New Year

2016The New Year is starting out better than the last one did.

Any number of differences have to include : Mary has hair – 1.5 inches and curly, but it covers her scalp, and gives her something to “style” . It isnt enough to make her happy about it, but there are no bald spots and no more wig adjustment tics.

The biggest difference this year however is that our travel plans do not include weekly drives into the transplant team at Northwestern Univ. Those trips were dreadful. Mary could barely walk a block from fatigue, her skin was discolored, no one knew why she felt so poorly, and each trip was more difficult than the last one. Then , on a whim almost, the professor put her on steroids. The skin color improved and energy improved, and life in general got better for two months. July 28th until nearly the first week in October.

Thats when the rash and itch returned. Those symptoms dont seem like much, but it meant the tumor had returned after 5 months of chemotherapy, a month in isolation on the transplant unit, and 3 months of miserable recovery from transplant and adrenal gland insufficiency.

It felt like betrayal, and the oncologists started talking about another transplant immediately. She was not going to accept that, and still refuses, even though it might offer a chance of cure 30%, but at the price of 30% mortality from transplant and a year of feeling the graft vs host disease symptoms and the side effects of those medications to fight GVHD.
So for now we are living with cancer,and weekly chemotherapy , and fewer side effects than last year.
Perky new year letter so far, ain’t it?
So what is really different?

1. We leave for the Virgin Islands tomorrow, at the end of February and again in March for 3 weeks of vacation that we couldn’ t take last year.

2. She has enough energy to pull all this off.

3. Chemo seems to be working at keeping things in remission

4. Our attitudes have improved as well.
So….. We are hopeful that 2016 will be a better year, and while cure is not in the picture, a long term remission would be a pleasant surprise. We wont know about that until it happens, so we just keep that as our horizon. A better view than last year’s .

It has been a while since I posted any news, but there has been little news to post.  Highly toxic (mustard gas derivatives) chemotherapy from last year for 6 months, with a 3 month recovery, has been replaced with less toxic chemotherapy, but possibly for a longer duration.  Weekly (Tuesday for 5 hours)  doses, are followed by a now recognizable pattern of side effects, recovery, and repeat the process.

Otherwise — Not much has changed recently and that is both good and bad, I suppose .

With two months of disease and symptom free life this fall, Mary was feeling pretty good and we made a lot of plans to go to Packer games, get out more, see the family more, travel  and generally get exposed to the world again since her blood count was good enough to be out in public after 9 months of chemo and recovery from transplant. Almost the length of a gestation.

Well, the symptoms returned, less than 6 months after transplant and when we talked to the T Cell lymphoma guru, he said it was to be expected.   Well, we didn’t expect it!

We had not been told that 9 months of misery would buy 2 months of life, and then recur with the same symptoms.   She is quite burned by that experience and has no interest in another transplant, even though this would be from a related donor, and have a potential for cure.   The allogenic transplant also has a 30% mortality rate. So there is that to consider , in addition to the 45-60 days in hospital isolation followed by 6 -12 months of weekly visits to control symptoms of graft vs host disease.

She has acceeded to try the new chemotherapy, Romidepsin, which blocks the proteins that stick to DNA strands from releasing those strands for replication (Histone blockade by Acetylation)  .   This happens preferably in lymphocytes (her tumor) and so the cancer can’t grow. It waits for the body to pick out those damaged cells and kill them.

Does it work ????   We can’t tell.   She still has symptoms of itching, but no new lymph nodes.   She has tried some unconventional treatments for the itching in Portland , Oregon   with success, but they are not available here presently. So she is unable to sleep most nights from the itching ( she describes it as thousands of mosquitoes biting from the inside out all over the body all evening and night long). The reason it happens at night is: that is the common time for the body to lower its hormonal defenses and with hormones low, the symptoms emerge.

So, with a negative CT scan prior to treatment (except for the two nodes removed for biopsy), and nothing but symptoms to follow the disease; we can’t tell if she is better or not.   And there are no objective tests to gauge success or failure at present either.

Is the itching persistence of the tumor, or death of the tumor cells from the weekly chemotherapy ? The oncologist doesn’t know and neither do we. We hope that it is the cell death that is producing the symptoms.   We know the chemo is doing something. She gets fatigue, nausea and significant alteration in taste for days afterward, so it is poisoning something.   We can only hope it is the right thing as well as the organ side effects.

We asked the Oncologist, how long will the treatment go on?   The limited literature on this disease states the Romidpesin therapy continues as long as it is effective, or until the patient cannot tolerate the treatment any more. So that sounds indefinite, but he said we would recheck scans (which previously were negative) in February, and make decisions from there.

At any rate, we are living our lives with the expectation of continued survival.

We have vacations to the Virgin Islands planned for January, February and March.

Depending on how she feels, and surgery for her mother as well, we may do a long weekend on the gulf coast of Florida in February as well.

Who knows?   We are living life one treatment at a time for now, and hoping things don’t go downhill.